Headhunter On the Prowl

August 11, 2009

Posted by Cort Johnson

Hachet Woman – Hilary Johnson is doing what she does so well-she’s taking heads. She’s never been about ‘support’, she was an investigative journalist after all. Her metier has always been holding up a bogeyman and then cutting it’s head off.  

Born with a golden pen her darting, evocative and often voluptuous prose engulfed a community that raged at the pitiful federal response. Osler’s Web was a tour de force of investigative reporting, a remarkable achievement for anyone, let alone someone with a severe case of ME/CFS. Yes, she had her white hats and her black hats, the good guys and the bad guys even back then; there was never anything subtle about her world view but she told a great story and it fit with many peoples experiences.

Real Speak. And she’s still swinging her hatchet. But is she swinging it too freely? Has she lost her head?  I would suggest that anyone who calls the CFID’s Association the ‘Bechtel’ of CFS and suggests that they are contributing to a ‘pogrom’ of the ME/CFS community has gone over the bend. There’s a difference between constructive criticism and an almost hysterical attack. Despite her declaration that it was time for ‘Real Speak’ Hilary Johnson’s recent blog reeked of the later.  

In a remarkably ugly statement she stated that it makes her ‘skin crawl’ to think of Kim McCleary representing ME/CFS patients before Congress. Alot of things make my skin crawl but this is not one of them. Kim McCleary is married to a man whose mother has had ME/CFS for over 20 years. I’ve watched Kim McCleary choke up in the middle of a conversation over the frustration at her inability to change the status quo at the CDC. I’ve seen her, overwhelmed with emotion, have to pause in the middle of her sentence as she testified before Congress. I read her cutting testimony as she took the federal government to task before that ‘little committee’.

The Enablers: Who are her fellow CDC enablers? Who regularly sits down with her to plan their next ME/CFS ‘pogrom’? Check out some of the ME/CFS Nazi’s who make up the board of the CFIDS Association of America.

  • Jennifer Spotila – former attorney, disabled, ME/CFS for 15 years
  • Katrina Berne, author Of ‘Running on Empty, ME/CFS for 15 years, disabled for eight years
  • Amy Divine – ME/CFS for 23 years
  • Lynn Royster – mother of a son with ME/CFS for over 20 years
  • Brian Smith – ME/CFS for 14 years
  • Amy Squires – sister with ME/CFS
  • Patrick Venetucci – family member with ME/CFS 10 year
  • Adam Lesser – ME/CFS for 6 years
  • Bruce Allhouse – daughter with ME/CFS

Somehow I don’t think these people are interested in eviscerating the ME/CFS community. But maybe Kim has managed to collect a group of CDC groupies. What did they have to say recently about our most infamous CFS research program?

Jennie Spotila (CFID’s Association Board Member)

“if CDC does not address it’s systemic problems …then the five year program will not be worth the paper it’s written on ..the CFS program is falling behind and failing in its mission. Until the program is reinvigorated by accountability and purpose you will be a barrier to success instead of being part of it’.

Dr. Katrina Berne (CFID’s Association Board Member)

In her testimony, Dr. Katrina Berne called the  calling the CDC’s spending practices ‘wanton’, their lack of progress ‘dismal’, stated that they do not take the disease ‘seriously’ and called their approach ‘slipshod’. She ended up stating that ‘she has little to be optimistic about’ the next five years given their past performance. As someone who’s been ill for 25 years she’s deeply angered by the agencies lack of progress stating that “The history of the CDC in regard to CFS has been dismal’.

I cannot imagine that any of them – many of whom have had this disease for decades – would sit next to, let alone work with someone they considered a stooge of the government.

The CFID’s Association and Kim McCleary, of course, after months of research broke the news of the CDC’s financial mismanagement and lead the way in calling for the program to be moved and new leadership. When the CDC refused to alter their treatment toolkit the CFID’s Association backed out of the provider education program and came up with a new one put together by ME/CFS physicians. When The Headhunter is on her prowl, through, such niceties carry little weight.

Berserker’s were a special subset of Norse warriors who as they went into battle had fits of rage so severe that they often ended up killing their own comrades. The best word I have to describe that portion of Hilary’s post is precisely that: berserk.

78 comments

{ 78 comments… read them below or add one }

John Anderson August 11, 2009 at 9:57 pm

The CAA fails to acknowledge the correct medical terminology of Myalgic Encephalomyelitis which has been recognised as a neurological disease by WHO since 1969, and its historical association with Poliomyelitis first described in the US Surgeon General’s report of the 1934 outbreak, that the disease was generally referred to as Disease Resembling Poliomyelitis or Atypical Poliomyelits until it was named Myalgic Encephalomyelits in 1956, and defined by Melvin Ramsay in 1986.

The CAA fails to acknowledge that the CDC’s 1988 and subsequent CFS definitions were not based on the medical facts as documented by physicians and researchers including the known enteroviral origin and do not describe the neurological disease in question, that CFS has become an umbrella term for various states of fatigue both psychological and physical and that this has hampered vital research. Further the use of CFIDS is not recognised by the WHO, it is simply another invented term.

The CAA has supported the CDC in every way and benefited financially to promote the false construct of CFS with its misleading CFS awareness campaign, and further adding insult to this has wasted money on basically duplicating the misleading CDC provider education program, ignoring the need for proper awareness by promoting the Canadian Consensus Guidelines to the medical profession and the historical and current papers which support the facts about M.E.

Very few Americans realize the history and knowledge of M.E. hidden by CFS – the CAA has done nothing to educate patients about the basic facts.

The proper call for any genuine charity concerned with the truth about M.E. and getting this disease properly recognised is by proceeding to establish a Congressional Inquiry into M.E., not by calling on the corrupt practices of the CDC to change when it is clearly the policy of that organization to persist with the degrading of the false construct CFS to a psychosomatic entity and to follow the UK model of CBT/GET which are medically irresponsible rehabilitation programs that ignore the reality and seriousness of the disease and endanger patients.

Hillary is not name calling, she is presenting the unadulterated truth without fear or favour, and despite the emotive language it is constructive criticism and long overdue, but instead of responding to the issues which any genuine patient charity would have done 20 years ago the CAA persists in engaging with the CDC and its CFS pogrom and attacking the messenger. Its the message thats important here!

It should be a wake-up call, its time for the CAA to change and get real about Myalgic Encephalomyelitis or get out of the game.

Will the CAA wake up and become the ME Association of America and take action to establish a Congressional Inquiry or will it self-indulge in tit for tat over Hillary’s comments? I hope that it heeds the message and that I get to hear Kim choke over the words Myalgic Encephalomyelitis and go berserk getting that inquiry going.

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cort August 11, 2009 at 10:51 pm

ME History – Notice that the last three references John can give date from 1956, 1969 and 1986. The sole official recognition of ME dates to the WHO designation of 1969. It did nothing for ME research. In the 20 years between 1966 and 1986 myalgic encephalomyelitis was the subject of 36 papers almost all of which were 1-2 pages long. (Check PubMed). ME remained a niche topic that was essentially ignored by the research community long after it received its much lauded WHO designation.

No History in the US – Meanwhile the disease known as myalgic encephalomyelitis in Europe was called epidemic neuromyasthenia in the U.S. i.e., there was no institutional history of ME in the US prior to the time chronic fatigue syndrome showed up.

Enteroviral Origin? - The ‘known’ enteroviral origin of ME is speculation not medical knowledge. Only a few studies have examined enteroviruses in ME/CFS; with the exception of Dr. Chia’s work in CFS patients the findings have been inconsistent and have failed the test of replication. Oddly enough even the ME organizations in the UK – which have the resources to do enteroviral studies – have not chosen to do them – which might in itself tell you something.

The Nitty Gritty – The CFID’s Association exists in a country in which the chronic fatigue syndrome term permeates the governmental, research and the medical fields. In contrast to the 30 or so short papers that have been published on ME over 4,000 papers have been published on CFS over the past 25 years. Asking the CAA to call itself or this disease myalgic encephalomyelitis – a term which has virtually no standing in this country – is basically asking it to commit corporate suicide.

Ask yourself what you would do if you were in the CAA’s place. I think few people would risk an organization to turn back the clock to use a term which was never used in the US, was hardly ever used in the rest of the world and which garnered almost no support in the medical community. The only viable choice the CAA has had with regards the terrible name was to change it to CFID’s.

The New Name ME/CFS - The point is swiftly becoming moot anyway. The gathering movement – from Canada to the US to Europe – to join the two terms and call this disease ME/CFS is a win-win situation for everyone. With that term you get the historical accuracy that ME brings and the clout that CFS has in the medical world. That is the name the CAA should embrace, not myalgic encephalomyelitis.

I think your comments at least until the end constituted constructive criticism. There was nothing constructive, however, about saying someone makes your skin crawl or about using terms like a ‘pogrom’. Hilary’s blog was simply an out and out attack; it vented bile and nothing more and played no constructive role at all in resolving the issues we all face.

This is not by the CAA speaking. I am not affiliated with them in any manner.

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Anna Walker August 12, 2009 at 1:36 am

Which ME organisations in the UK have funds for enteroviral research? If only!

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cort August 12, 2009 at 7:20 am

Research by UK Support Groups

MERUK is funding 15 research projects – http://www.meresearch.org.uk/research/projects/ongoing.html

ME Association UK
– is funding two research projects http://www.meassociation.org.uk/content/blogcategory/21/145/

The CFS Research Foundation is funding one very large research project http://www.cfsrf.com/pdf/Research%20Projects%20Funded%20by%20the%20Foundation%20%2023.10.07.pdf

The CRF has taken the best stab at enteroviral research. From 1993 to 1998 they funded six studies and in 2002 one on that topic. Since 2002 they have not funded any research into enteroviruses.

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Sarah August 12, 2009 at 3:16 am

Cort, thanks for saying what you did. I found Hilary Johnson’s piece good, until she went way over the edge. Personal attacks like that are not the same as incisive observations. I thought she was using Jane Bryant as her model, and that made me very sad, very disappointed. One JB in our little world is one too many.

John Anderson responds to your post by dragging out the name issue — like a litmus test. He, like Hilary Johnson, missed the year 2008 when CFIDS Association of America dramatically and drastically changed its actions — raising private funds to fund research underway now, and breaking formally with the CDC group due to its changes and poor judgments.

This kind of rigidity toward each other makes it hard to find support within the network of people who have M.E./CFIDS. Hard to find civil and productive discussion, much less action. We are so harsh with each other that we need not wait for outsiders to knock down our case for respect, support and better research. We do it to ourselves before they have a chance. Come to think of it, while we are so busy attacking ourselves, we let others slip right in and take charge of our world

I do not see how we will make any progress until we stop with the litmus tests, the rigid judgments, the cruel insults, and the notion that there is one ‘right’ position towards M.E./CFIDS. We are all in this together, and so far as I see, no one has a lock hold on the wisest next steps to take. All we can do is try, try on many fronts, changing our ways as we learn more. That, and be kind to each other, keeping in mind we are sick and much less able to suffer an extra load of slings and arrows of outrageous fortune.

Given the litmus and purity of view tests, I suppose it is necessary for me to say I do not speak for Kim McCleary or the CFIDS Association of America. Or the CDC for that matter. This is my own view of the sad & uncivil state of discussion among us.

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Pat Sonnett August 12, 2009 at 5:53 am

Cort, thank you so much for your thoughtful comments. I too was extremely concerned about Hillary Johnson’s statements about Kim McCleary and the CAA, and I appreciate your setting the record straight. While not perfect (and no organization is), the CAA has been a champion for our cause since the beginning. For those of us who have been ill for over 20 years, the CAA became our lifeline. offering hope and understanding. This organization deserves our support, welcomes our input (even when we disagree with something), and continues to push us forward to advocacy making it easy for us to participate by providing the “click and send” letters. I found the statement that both McCleary and Reeves should resign their positions to be outrageous. There’s no comparison between the two and they should not be linked together. I will continue my support of and communication with the CAA and thank them for their service to us all these years.

I also thank you for your continued service which becomes even more valuable to me with each post! I know we can always count on you to tell it like it is. Keep up the good work. You are making a difference!

Pat

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Mary Schweitzer August 12, 2009 at 8:32 am

The CFIDS Association of America has been the closest thing to a national we’ve ever had, and they’ve done a lot of good – in particular, supporting good biomedical research when NIH has refused to.

But CAA has its flaws, and I guess this is as good a time as any to try to air them.

1. In the US, a national needs to have not just a single central office, but state organizations with a say in what goes on, and that in turn are connected to locals. That’s how the grassroots get connected to the leadership. I know a state with an excellent organization that wasn’t even warned when the CAA’s traveling picture show appeared at a big mall in their state – a pity, because there was no one to hand out information or talk to intersted viewers. They would have staffed it – had they only been asked. CAA does not really represent a lot of us because they sit so far away, and they have no interest in input.

2. The CAA did not break the story of the CDC cheating. Two years earlier I heard Meghan Shannon testify about it at the CFSCC meeting, and Congressman Nadler of NY, with activist Neenyah Ostrom, had asked for hearings. In what was I guess naivete, CAA allowed Reeves (who was responsible for the abuse of funds) to be the “whistleblower,” which now makes it difficult to get rid of him.

3. The CFSCC had a committee working to change the name of the disease from “CFS” when it was dissolved. When the CFSAC finally convened three years later, the name change committe wanted to present its report. Kim, who was being deferred to by the CFSAC head, said NO. She said it no longer counted because this was a new group. I was one of only two public members at that meeting. I was shocked.

4. What DID the CDC do with that makeup money? They held meetings, with British psychiatrists getting consulting money, on changing the definition and creating the quesionnaires. Kim was on those committees. She never told anyone else in advocacu what was coming down the pike – maybe she saw nothing wrong with them – but that’s why she should be taking advice from the state organizations – I can assure you many would have known something was wrong and it had to be stopped.

5. Finally, when Bill Reeves told Kim to use the number 4 million in the ad campaign (which was very well done), She did not ask why, or how he had arrived at that new conclusion. If she knew anything about advocacy overseas, she would have known this was more like Wessely’s numbers. Indeed, had she known anything about what was going on in England she would never have used Peter White to write the essay on CFS and England for the big overall edition of the CAA’s magazine then. If she had read just one of his journal articles she would have known he believes this disease is caused by mollycoddling the sick, which leaves them with inappropriate illness beliefs to be fixed with CBT and GET.

No, Kim Kenny and the CAA are not Bechtel or Enron! But they have been far too isolated, far too insular, for far too long. And the result has been to bolster Reeves’ role in CFS (something I imagine they now regret – but the horse is out of the barn now), to diminish the information that could and should have been shared at the state and regional level – as qell as the international level – and as for the grassroots, they have no real say at all. (Reorganization to include states and regionals, which in turn would ionclude locals, is something I suggested to Kim in 1996. Over the years I have learned I was not the only one.

So the problem isn’t personal – it’s institutional. The CAA is not a truly national organization because they do not take state and local input seriously. It’s all Kim’s show, and no matter how much she may care for people with this disease, she has done all of us a disservice by refusing to share authority – to share KNOWLEDGE.

Maybe from this discussion we could get such a change. I hope so, because at this moment in time we really need a national that can speak for ALL of us.

Mary Schweitzer

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Jerry August 12, 2009 at 9:25 am

I would like to remind you, Cort, that
it took the CFIDS Association of America more than twenty years to finally
respond to the CDC in this manner that you feel is constructive to
the M.E. community.

I would like to also point out that the
founder and Chairman of the CFIDS Association of America, Marc Iverson,
resigned from the CFIDS Association of America for some of the very reasons
that are described in Hilary Johnson’s blog entry, albeit, it was not stated as eloquently as Ms. Johnson.

Marc Iverson’s resignation letter as posted to Co-Cure on July 13, 2001,
courtesy of Edward D. Isenberg:

Marc Iverson (PWC, 22 years) was the Founder and, for its first 13 years,
Chairman of The CFIDS Association of America. Diagnosed with “chronic
Epstein-Barr virus” after a seven year struggle, Marc organized a local
support group, networked and collaborated with other CFS pioneers around
the world, and in 1987 began funding research. He recruited a handful of
volunteers and, rejecting “CFS” as horribly demeaning, gave birth to a new
name, Chronic Fatigue & Immune Dysfunction Syndrome (“CFIDS”). Marc then
founded what is now The CFIDS Association of America, and began publishing
The CFIDS Chronicle on a monthly basis. Marc, a successful businessman
before becoming disabled with CFIDS, employed his knowledge and skills to
build the largest charitable organization in the world dedicated to
conquering CFS / CFIDS / ME.

This Spring Marc engaged in lengthy discussions with the Association’s
President & CEO (Kim Kenney), but was unable to resolve numerous
differences of opinion with her on major policy issues. He therefore
resigned from the Board of Directors of The CFIDS Association of America
and all leadership positions effective 8 AM on June 22nd, 2001. As a close
friend and fellow CFIDS activist, Marc has shared his letter of resignation
with me. I have obtained his permission to circulate his statement because
I feel it is newsworthy to the PWC community. Marc and I were also
concerned that the reasons for his resignation might become subject to
rumor, misinterpretation or misrepresentation.

Marc has asked me to make special mention of the fact that his resignation
letter is copyrighted. While permission is granted to reprint it for any
non-profit purpose, it must be in whole and without editing or excerpting,
and must include the copyright notice as part of such reprinting. Marc was
quite clear that, if necessary, he is prepared to take action to make sure
his remarks are not altered in any way or taken out of context.

Finally, Marc also emphasized that, while he strongly believes the
Association should shift its priorities, he has no desire to impair the
many constructive programs (such as pilot research studies) the Association
funds. He feels people should make their own decisions as to whether, how,
and to what extent they should support The CFIDS Association of America
and/or any other CFIDS organizations. However, Marc did note that since he
founded The CFIDS Association it has continuously accepted “earmarked”
contributions (e.g., for research) and that such restricted gifts provide
donors with a significant degree of control over how contributions are
utilized.

Edward D. Isenberg

Formal Statement of Resignation from
The Board of Directors of
The CFIDS Association of America and
All Association Committees and Positions of Leadership

Marc M. Iverson, Founder
June 22, 2001

Fellow Directors of The CFIDS Association of America, I, Marc M. Iverson,
hereby resign from the Board of Directors of The CFIDS Association of
America, and all Association committees and positions of leadership,
effective 8:00 a.m. EDT, June 22, 2001.

As the founder of The CFIDS Association of America, Chairman of the Board
of Directors of the Association for 13 of its 14 years, a major donor and
fundraiser for the Association, and the sole permanent member of the
Association’s Board of Directors, I have reached this decision with great
difficulty and extensive contemplation, and only after lengthy discussions
with the President and Chief Executive Officer (CEO) of the Association, K.
Kimberly Kenney, for whom I continue to have professional respect and
admiration.

There are five primary reasons for my resignation.

First, I am overwhelmed with family obligations and the struggle with my
own health problems.

Second, I have a different vision for the Association, and different
priorities for the allocation of Association resources, than the CEO. I
favor aggressive/activist “PWC focused” strategies with the objective of
providing the Association’s constituency (persons with CFS/CFIDS and
related disorders) with what it wants. In contrast, the CEO favors more
conservative “mainstreaming” strategies intended to define and communicate
CFS/CFIDS issues to the public (including the medical community, the media,
and policy-makers) with the objective of making CFS/CFIDS a mainstream
disorder.

Third, I hold a different position than the CEO with respect to certain
critical Association policies and programs. For example:

(1) I favor and the CEO opposes immediately adopting a very aggressive
stance opposing the discriminatory and incredibly damaging name CFS/CFIDS
(chronic fatigue syndrome/chronic fatigue and immune dysfunction syndrome)
and I believe efforts to change public attitudes are virtually hopeless and
wasted with the present name;

(2) I favor and the CEO opposes directly providing a system that permits
patients to exchange health care (physician) referrals;

(3) I favor and the CEO opposes immediately allocating resources to collect
and disseminate far more information on treatment;

(4) I favor and the CEO opposes immediately revamping the Chronicle to make
it more timely, accurate and informative;

(5) I favor and the CEO opposes allocating/raising resources to build a
state-of-the-art fully interactive web site that serves as a real time
“clearing house for information” thereby enabling PWCs and interested
parties to exchange information and ideas in a safe and civil environment;

(6) I favor and the CEO opposes immediately developing specific,
objectively measurable goals and benchmarks to measure the success or
failure of all Association programs and the staff paid to implement them;

(7) I favor and the CEO opposes placing a much greater emphasis on raising
funds for, initiating, and reporting CFS/CFIDS research; and,

(8) I favor and the CEO opposes gradually shifting resources away from
programs not financially supported by Association donors, such as the
Association’s extensive lobbying efforts.

Fourth, I have been caught in a “moral dilemma” of defending major
Association policies/actions with which I strongly disagree.

Fifth, I can not fulfill my responsibilities (as defined in the Association
Bylaws and further outlined in the 2001 Association Operating Plan).

Fellow Directors, I believe I’ve made reasonable (if not extraordinary)
efforts to state my case, but have been unable to persuade Ms. Kenney that
the Association should drastically change. Ms. Kenney is the driving force
behind the Association and, although major policies and plans must be
approved by the Association’s Board of Directors, Ms. Kenney (as CEO) and
her professional staff are charged with the responsibilities of both
developing and implementing the Association’s policies and plans. Without
Ms. Kenney’s support, it is unrealistic to believe that the positions I
advocate will be adopted by the Association’s leadership or
implemented. Accordingly, it is time for me to step aside.

I’m proud of what the Association has stood for and accomplished in the
past. I wish you well individually and as an organization.

Marc Iverson

(c) 2001 Marc Iverson. Permission is granted to reproduce this statement in
whole, without editing or abridgement, for any nonprofit purpose. This
copyright notice must be included in any reproduction. All other rights
reserved.

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cort August 12, 2009 at 12:29 pm

CDC - I don’t feel the CAA acted inappropriately towards the CDC prior to Dr. Vernon’s leaving that organization. People tend to view the CDC as a monolithic organization that hasn’t changed over time. After 2000, however, the CDC in collaboration with many CFS researchers, all of them working pro bono, produced the most creative and complex attempt to explain ME/CFS that had ever been done (the Pharmacogenomics Reports). They essentially opened up their database and gave outside researchers a go at it. They even gave it over to a data mining organization to take their stab at it. Anything could have emerged from those open ended studies. This was not an organization that was particularly tied to a certain viewpoint of this disease.

This effort ended with the head of the CDC getting up on a public platform and announcing to the world that CFS is a major and real disease. Although a portion of the ME/CFS Community somehow decided to ignore that that was a major accomplishment that announcement really opened doors! The CDC also embarked on its first media campaign ever to convince the public that CFS was a real and major disorder. The CAA didn’t take on the CDC at that point because they didn’t NEED to. The big problem back then was the NIH. (Now both are big problems!).

Marc Iverson - The Marc Iverson resignation was an unfortunate event and I think everybody lost by it. For whatever reason he was unable to convince the CFIDS board that his vision was the better one to take. I would note, though, that while he resigned from the organization he has done nothing to harm it or undermine it. I’m sure he would be appalled by Hilary Johnson’s statements. Marc Iverson was featured in their historical issue prominently.

I think some of his ideas were very apt and I think if they had prevailed the CAA might very well be a stronger organization and have a solider base. It’s hard to imagine, for instance, that having a patient referral section and providing extensive information on treatments wouldn’t have been a real hit with the patient community.

It’s interesting that 8 years later the CAA is picking up some of Marc’s ideas; they are more interactive – they’ve done a great job with the Facebook site and their research program has obviously become the major focus that he wanted to be. (Obviously that less than interactive website is still a problem!)

The Present - Still this is not a reason not to support this organization. Kim McCleary’s CAA has not been sitting still. They increased their advocacy efforts with their Internet messaging capability. The Chronicle improved to become a very professional looking and resource rich document not long after Marc left. They managed to get the CDC (of all people) to find the first nationwide media campaign on ME/CFS.

In the last couple of years they’ve produced a very successful Research Initiative, they somehow managed to entice Dr. Vernon to leave the CDC to become their first research director, and they created a new and very successful physician education program on Medscape. The political contacts they maintained through their professional advocacy help them did the CFS research program. They fought off attempts to get rid of the federal advisory committee on CFS (CFSAC) – one of the very few devoted to one disease.

They do appear to have lost membership but they substantially increased the amounts of funds they get from large donors. They’re winning awards for being such an efficient organization – an important issue with non-profits.

There’s alot good going on that organization! Even if you embraced Marc Iverson’s there’s still no reason not to support this organization. He does and so should we. It’s doing a very good job in alot of areas.

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Eva August 12, 2009 at 10:22 am

Thanks for posting this, Cort. I think Ms, Johnson’s comments are incredibly harmful. Hyperbole and rage only discredits the case. Once you compare people to Nazis, you become instantly discredited and so, alas, does your cause. I wish she would ratchet down the rhetoric. The facts are convincing enough.

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Cort August 12, 2009 at 10:41 am

Thanks Mary for presenting the opportunity for a dialogue. As Pat noted no organization is perfect. Even organizations that make the right decisions will be criticized by people who think they made the wrong decision. My goal is not to artificially boost the CFID’s Association but to open up a kind of conversation that I think has been lacking; one that attempts to look at the organizations strengths and weaknesses.

I’ll give you my take on some of your thoughts

(1) Local Branches - CFID’s Association should have local branches or support local groups – this is the kind of CAA should be the National Fibromyalgia Association argument. I can’t imagine that anyone would be against this. The question, though, is whether the CFIDS Association has the resources to do it. I think it’s very likely that they don’t.

This is an organization that had to stop Lobby Day several years ago because they couldn’t afford it. The NFA has the benefit of supporting a much less controversial disease, a disease that has several times the number of patients and corporate sponsorship,etc. The question for me is why so few people support the only organization that has a chance of impacting matters on a national level.

I believe they must have somewhere along the line lost a bit of their touch at enrolling patients. (They are, however, apparently using their money as effectively as they can winning several awards over the past few years for being a particularly efficient nonprofit). I think they’ve also made a big mistake in not aggressively rebutting some of the what I often find are honestly, ridiculous charges, that unfortunately tend to play well in the ME/CFS community.

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cort August 12, 2009 at 11:30 am

2. Present CDC Scandal - I was referring to the present CDC scandal when I stated CAA broke the news of the CDC’s fiscal mismanagement of their CFS research program. Even if they hadn’t broken the news it would have gone nowhere without them. They were able to engage Congressman and Senators; they gathered the incriminating documents – they put months into the investigation. Nobody else had a clue this was going on. Without the CAA we’re not even talking about this subject right now.

3.Name Change - The CFSAC did indeed read the report; at the end they decided to table the issue.
Not only were they a new Committee they were a new type of committee. I’m not sure why this particular issue comes up so often. I’ve seen Dr. Reeves for instance, taken to task for informing the CFSAC that what they were trying to do this outside their jurisdiction. The problem was was that what they were trying to do was outside the jurisdiction! So if Kim, knowing the rules, stated that committee was not bound to report on the issue – she was right – too bad for her!

Ultimately, though, this is a moot point that had nothing to do with the ultimate resolution of the Name Change process; the Committee discussed it and in the person of Dr. Bell stated that they did not support it. You can find that statement on the Internet.

Again this is an issue in which good people can disagree. The CAA consulted with some experts and examined other name change events and learned that changing even a bad name to a good name had huge costs. Research funding, for instance, tumbled dramatically for several years. Would it have been worth it to change the name? I don’t know but the important thing is that there were valid arguments on both sides. The fact that the entire CFSAC committee- made up, from what I remember, of stalwarts of the ME/CFS community, did not support the effort tells you something about that.

3. CDC – I don’t know what happened during those meetings and I don’t think you know either. I know that Kim McCleary was one of many people to participate in these meetings. Yes, the CDC did and does consult with British ME/CFS experts. They also consult and work with Nancy Klimas and others. For much of the time since 2000 the CDC was a rather open collaborative organization – giving their data out freely to several groups including an international data mining organization (CAMDA) – which was given free reign to make of it what they would. Yes the CDC seems to have taken a more behavioral stance. Should the CAA been more on top of that – perhaps they should’ve – but they certainly are now.

4. Good Coverage - The CFID’s Association covers all the research efforts going on – not just the ones you or I might have a particular fondness for. Like it or not CBT is able to help some patients and because of that the CFIDS Association of America has a duty, I believe, to report that.

Another Litmus Test – Of course that issue you highlighted mainly focused on physiological studies. The Peter White issue is another litmus test. I think that’s just wrong. In fact I think its very wrong. CBT does help some people! It doesn’t help everybody and it’s not a cure and the CFID’s Association does not present it as a cure. And they provide information on alternative treatments. The CAA did nothing more than cover the research – good for them that they had the guts to do that.

5. Marketing to the Masses: This number at the CFIDS Association (1-4 million) used in their marketing campaign is for me another moot point. It was a marketing campaign, after all. It was designed to generate interest. If I was in charge of a marketing campaign I would probably use the most impactful numbers I could find. The public, after all, knows nothing of the controversies regarding the different definitions. They might, however, perk up their ears a bit more if they hear 1-4 million Americans. This point comes up all the time and I’m not sure why. In the context it was done it was not a big deal to me that the CAA used that number. It would not bother me either if they used that number lobbying federal officials either.

Grassroots? With regards to the grassroots I wonder where they are? San Diego – the eighth largest city in the nation – has not had a viable ME/CFS support group for probably 15 years. New York may have one that started up. Does LA have one? There isn’t one in Washington, DC. You count the number of viable, impactful local grassroots efforts probably on the fingers of one hand. Even the known groups are falling apart; DFW and Rocky Mountain CFIDS are both having trouble keeping themselves going.

When you speak of grassroots my sense is that you’re talking about a few people in a few cities. They’re not showing up at Lobby Day, they are not at the CFSAC meetings, they’re not attempting to impact state or local issues. Unfortunately they’re not there! There’s not much there there with regards the grassroots and I’m not sure how one small national organization is going to fix that.

it is a good question though. It’s possible that the CAA made a big error when they decided not to plow alot of their resources into building local organizations. Certainly we need much more support from the ME/CFS community and that would seem to be a good way of getting that. It might very well have helped the CAA and it might very well have helped us. It’s a legitimate question that’s for sure.

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Mary Schweitzer August 12, 2009 at 2:18 pm

That was hardly a discussion, Cort. It was a rationale.

Example: you wrote that it would be too expensive to go to the normal
National State Local
form of organization. CHADD did it without money – what you need is interest. We have competent states out there. Perhaps a better way to get the normal type of national organization for the U.S. would be for the states to join together to create an umbrella organization, without the CAA, since they find it such a bother.

And that was just ONE point. Let’s step back, Cort, and see if anybody else has anything to say.

Mary

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cort August 12, 2009 at 5:21 pm

Yes, maybe that was a rationale of reasons not to create local groups and honestly I have no idea how expensive or difficult it would be to create local groups and keep them going. It is a good question. Did the CAA miss the boat on that one? Perhaps they did.

I think the idea of a national group outside the CAA is a pipe dream. A year or so ago a group of advocates you among them as as well as myself, proposed starting some sort of organization. It contained many of the more prominent advocates in the US. It lasted about four weeks. We never even disbanded – it just disappeared. I don’t think the state organizations which would include organizations, many of them tenuous in Colorado, Texas, Florida, New Jersey, Vermont, Wisconsin and maybe a few others are anywhere near creating a viable national group. I just don’t think it can be done. I’d love to be proved wrong.

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John August 12, 2009 at 3:14 pm

One must not forget that the Pharmacogenomics project was done on patients diagnosed using the Empirical definition, which to me(and many others) raises serious questions as to whether or not they had ME/CFS at all. According to Craig Maupin at the CFIDS Report, 84 percent of the Wichita samples didn’t even know they had any illness, much less chronic fatigue syndrome, and the average combined workload (employment and chores) of those diagnosed with CFS was close to 48 hours per week. From the patients relative non-disability, a prevalence rate that is between 6x and 10x previous estimates and has been criticised in the medical literature by Leonard Jason who also found that 38% of patients with depression qualified as CFS using them as well as the IACFS/ME recommending not only that the CDC abandon the Empirical definition’s usage, but to actually issue a public statement in this regard and which are not used by any other research group in the entire world other than the CDC/Emory Mind/Body collaboration despite having been published for over 4 years, among numerous other criticisms, in my opinion every single study done by CDC since 2005 which use them has been a complete and utter waste of money, Pharmacogenomics and all. So for CDC to open up this lone database doesn’t spark much confidence at all.
http://www.cfidsreport.com/News/06-CDC_CFS_Reeves.htm

Plus isn’t it kind of funny how CDC opened up that database to anyone and everyone yet they have stonewalled opening up other databases dating back to the original epidemics despite being repeatedly approached about this for who knows how many years?

As for the topic of this blog, I used to have reservations about Kim McCleary after reading Marc Iverson’s resignation letter and the NCF’s response to the CDC’s public awareness campaign/Pharmacogenomics press releases while the CAA was standing next to CDC promoting it, plus I am kind of taken aback by the various(numerous?) pages on their website that poo poo any notion of contagiousness, but after reading the CAA’s response to the CDC 5 year plan, Kim’s and the various board member’s responses to it, Kim’s testimony to the CFSAC and her pouring through the numbers regarding CDC’s current mismanagement of funds, I believe she is a valuable asset to the CFS community and brings many years of experience and knowledge to the table and I would be hard pressed to think of another person I’d want in charge of the CFIDS Assoc. That’s not to say that I still don’t agree with some of Marc Iverson’s points in his letter and don’t appreciate Hillary Johnson’s relentless pursuit to expose those who’s methodoligically flawed work and ill informed beliefs about CFS result in much harm to CFS patients around the world(not to mention the general public who also suffer as a result- Gilda Radner’s cancer was initially diagnosed as CFS for an example), but as of today I think Kim is doing a pretty good job and hope she stays on as Pres. of CFIDS Assoc. as well as staying on CDC’s ass!

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Jill McLaughlin August 12, 2009 at 3:38 pm

I’m surprised to see Cort’s response. I do not see how this lead-in is thoughtful or constructive. Complaining about Hillary’s approach, but is this any better? She uses harsh, blunt language but gave reasons and explanations. Investigative journalists are mainly concerned with facts and evidence and base judgements and positions as such. Hillary had been deeply involved and on the inside far beyond what any of us have ever been. I don’t think it was for rhetorical flourish. She writes so well as to capture people’s interest and attention. That should not be held against her or used to undermine or negate her message. It is what journalism and reporting is about – to make the important sound interesting – not to make the interesting sound important.

Talk about tone and rhetoric. At a glance in a few paragraphs there was: hatchet woman, head hunter, on the prowl, taking heads, fits of rage, looking for bogeyman, reeked, lost her head, gone over the bend, beserker.

I think that this would be called an attack and a rather ugly statement. And all of this subsequent dialogue seems to be nothing but a plug for the CAA, though constantly denying it and stating otherwise.

Even on face value, if the CAA were this good, after more than 20 years, why has there been virtually no progress? The “no one’s perfect and pple are picky and want to find fault” hardly covers it. Efficiency is not effectiveness. Someone summed it up that they “play the role of an advocacy group.” They are great at business and politics and PR and put on a show – but no results. They’ve been referred to in DC/HSS as the “charlatans” (Charlotte-ans).

When I first became involved they had around 20,000+ members, and pple were supporting them. They stopped for a reason. For one thing, for years the CAA paid a lobbyist somewhere around $200,000. This was throughout the entire time that money at the federal health agencies was plentiful and NIH budget was practically doubling every 5 years. CFS remained at the bottom of the barrel for funding of any illness and funding basically flatlined or decreased.

Their membership has plummeted – last I saw from their reported revenue from membership dues was around 4,000 paying members. With as bad as things are there must be darn good reasons as there is no alternative. It does not matter how many pple with “CFS” are on the Board – they have always been way out of touch with the patient community and the important issues, as Mark Iverson’s resignation letter proves. As Jerry just said, it has taken them 20 years to figure out the problems with the CDC? Even if as you try to assume and portray that they finally “get it” and had a revelation about the CDC (again, things that have been obvious to most and which patients have been aware of and saying for years) and say they have implemented some tiny portion of what Iverson suggested 8 yrs ago, they must be real slow learners. Doesn’t instill confidence or trust.

Perhaps we should take time and deconstruct some of the issues and arguments.
When facts and premises are wrong the conclusions will be wrong.

I commend Hillary for speaking out. Some things are black and white, true or false. Trying to ignore the negative and put a positive spin on everything and shooting the messenger just causes more problems. We continue to do so at our own peril.

Jill

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cort August 12, 2009 at 6:21 pm

Federal Advocacy - I agree Jill that the CFID’s Associations federal efforts at advocacy have not paid off. Funding at both the CDC and the NIH has tanked and I heartily believe that the CFIDS Association should’ve highlighted that and attempted to engage patients in that issue much more than they have. Bringing the CFS research program to the Office of Research of Women’s Health has turned out to be pretty much a disaster. Getting a scientific institution such as the NIH which Congress in general specifically shies away from attempting to influence is obviously very tricky. It’s not easy to exert political influence in that area. Nevertheless the CAA does not get good marks for the effectiveness of its federal advocacy program!

Membership - Yes the CFID’s membership has declined and I do believe- as I noted earlier – that they lost something when Mark Iverson left the organization. At the risk of sounding defensive I would note that over the past 15 years or so that many support groups have disappeared. ME/CFS was in the news frequently in its early years. As I remember it made the cover of Newsweek or Time, the Rolling Stone did a feature article on it, there was a three-page article in the San Diego Tribune, Tom Hennessey appeared on Larry King! The ‘Yuppie Flu’ was news. A dramatic decline in membership across the board, from national group to local support groups as this disorder moved off the newsfront was inevitable. More than that, though, probably contributed to the decline in the CAA’s membership.

The CAA’s Pogrom - When Hilary Johnson proposes that the CAA is part of a pogrom against ME/CFS patients I think it’s important to point out just who she’s talking about. It’s not just about Kim McCleary. Hilary is talking about people who have had this disease for decades, who have seen major portions of their lives virtually wiped away, who would like nothing more than to see its eradication. That’s crazy thinking. That kind of talk should not be supported by this community.

CDC - As I noted earlier I disagree with the popular notion that the CDC has been all bad. That’s not what I see when I look at the research. There are periods of time when the CDC has done innovative, creative research and there are periods when they haven’t. You forget that the CAA was in the thick of it during the GAO scandal – using their congressional contacts to help ensure that that the problems were exposed. It was just 10 years ago they were helping to uncover a scandal at the CDC that ultimately resulted in the director of the CDC resigning!

Enabler? – Hilary Johnson calling the CAA an enabler of the CDC when they’ve been at the forefront of exposing two scandals at that organization made me drop my jaw. I assure you the CDC does not believe the CAA is their enabler! They believe the entire public review session was set up by the CAA to embarrass them. Bill Reeves implied just that to me which I thought was hilarious since a vocal segment of the ME/CFS community thinks that they ‘enable’ them.

I believe that the CAA has, in the main, acting quite appropriately towards CDC; when evidence of malfeasance in the late 1990s showed up they lead the charge to expose it. During the period when the CDC was receiving payback funds and they were doing the research that resulted in the Pharmacogenomics reports the CAA focused its critiques on the NIH. When evidence once again showed up of the financial problems and poor productivity at the CDC the CAA refocused it’s efforts on the CDC. My experience is that the CAA has shown a quite nimble approach to the CDC.

Balanced Discussion – What I’m asking for is balance – for a recognition of the strengths and weaknesses of that organization. I think I’m providing that. I think if we look at the CAA objectively we’ll find an organization that has some real strengths, that has been quite innovative at times and has produced some real accomplishments. We’ll also find an organization that has its weaknesses – that could be better at communicating with patients and advocates, that has not embraced some roles that would have benefited the patient community and that has not taken full advantage of the opportunity that the Internet provides.

That is the kind of discussion that I think we can all benefit from because we all benefit from having a strong national organization. The upside to that is enormous. This is one of the reasons why I was so disappointed to read Hilary’s remarks.

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upnorth August 12, 2009 at 4:42 pm

I think passions run high especially for those of us with or personally connected to this illness.

As a ME/CFS patient myself, it is very discouraging to see the slow pace of research for the illness….

When I got sick 7 years ago I started reading bits of research and it seemed like at least a test (biomarker) was just around the corner. Now I don’t expect one (let alone a useful treatment) in my lifetime.

I very much appreciate Cort’s research, perspectives and insights into CFS research and the CFS community. I don’t agree with every single thing, but I think it’s really important to be respectful….and appreciate people for the good work they’re doing.

I realize when ME/CFS patients constantly face disrespect, disregard and dissmissal (by doctors, friends, family etc.), anger and frustration easily surface. We should at least be kind to each other – respectfully disagree – but remember we’re all fighting the fight daily (and it’s exhausting).

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michael allen August 12, 2009 at 6:12 pm

Cort, When you say that “CBT works for some patients”, which version of CBT do you mean? The UK version involves curing patients of their “false illness beliefs”. If this is what you mean, and this is what the Wesseley School argues for, then if it works they were certainly not treating people with ME/CFS. In the U.S., there’s a more benign version of CBT, which involves, essentially, helping people cope better, learn to pace themselves, explore the limits of their energy envelope. I’m not knocking this at all, it can be helpful to some, but it’s as applicable to ME/CFS as to many other chronic illnesses. So to list it as a ‘treatment for CFS’ is maddening.

Re: the CAA using the “four million’ figure. It is no good for us in the long run for our one national organization to be quoting bad science. It doesn’t matter if it’s more attention getting as a marketing device. Eventually, spouting bad science will come back to bite us in the butt and hurt the cause. And one million is pretty striking on its own; that’s double the number of M.S. cases in the U.S.

I’ve been ill since 1991 and in that time the CAA seems remarkably ineffective to me. You make a case for a few accomplishments but it has been so little and with its current trajectory I doubt I’ll live to see a cure. Kim may be a nice person, I’ve never met her, but given the CAA’s lack of accomplishment, I don’t see why she should still be in charge, why she still is in charge.

Yes, Hilary’s rhetoric was a bit overheated, but I think her basic points were all correct. It’s long past time for Kim to be replaced and to see fresh blood and energy in charge at the CAA.

Re: the Board. I’ve been a member of a BOD in the past, and in the case of the organization I was a part of, there was little the Board could do to influence the Executive Director.

On the subject of the the lauded CDC and CAA marketing program: I’m a member of the Kasier HMO in San Francisco, and still, in 2009, I cannot find one doctor, one nurse, one lab technician, one pharmacist, one anybody in that organization that knows anything about CFS, cares anything about CFS, is interested in learning anything about CFS. I ask everytime I go and either get blanks stares, usually nurses, annoyed looks, usually doctors; whenever I get someone interested it’s as if I’m delivering breaking news, not news of a 30 years epidemic. Instead, what I saw in San Francisco were some large pictures of tired looking women, placed in shopping malls. ‘nuf said. I’m going to stop now before my rhetoric gets overheated and I don’t have enough energy to tolerate all the anger I feel at having lived through so many wasted years. Hilary gives voice to that anger. I am tired of nice people who accomplish nothing.

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Meghan_Mrgan Shannon August 12, 2009 at 8:52 pm

Hi Cort, Please Read Mary Schweitzer’s notes and others again. Reeves is NOT the Whistle Blower and the CAA/Kim seems to keep this fairy tale alive.
Congress Nadler and Myself Meghan as Medical Prof. with ME-CFS/MPWC(or MPWME) first brought up the money problems in th CDC and NIH.

As for where are the “grass roots” organizations in LA and other places???
Well from 1985 until 2002-3 there was a agreat Newsletter put out by Michele Husson-Jones on a monthly basis. LA started out with over 23 support groups, they were responsible for bringing the first CFS now ME national meetings in LA…Byron Hyde, Nancy Klimas…you name them

Orange County had at least 10 groups and I know of the five in San Diego as I helped start the North Coast CFIDS of San Diego in 1986.

We were slowly shut down by CAA and then when NFA/FAME came into being in 1999 they took over the CFS support groups for FM groups. This happened all across the USA and Lynne Matalana NCF actually used May 12th as the FM awareness day.

This kind of “TAKE OVER” of groups like NFA/FAME did with CFS and ME patients is similar to Corporate taking over. CFIDS and ME patients laid the ground work only to be walked over and taken over by FM groups. The CAA welcomed NFA/FAME

So where are the activists, well I for one am still here with at least 6 others that I know of.
However we are doing work, we are not on the internet talking and doing nothing.
Meghan Shannon

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Jill McLaughlin August 13, 2009 at 7:10 am

Blogs can be problematic in that the discussion can be controlled by the blogger who sets the topics and direction. But it is possible to quickly examine these issues.
Added comments directly.

cort 08.12.09 at 5:21 pm

Cort: “Yes, maybe that was a rationale of reasons not to create local groups and honestly I have no idea how expensive or difficult it would be to create local groups and keep them going. It is a good question. Did the CAA miss the boat on that one? Perhaps they did.”
I think the idea of a national group outside the CAA is a pipe dream. A year or so ago a group of advocates you among them as as well as myself, proposed starting some sort of organization. It contained many of the more prominent advocates in the US. It lasted about four weeks. We never even disbanded – it just disappeared. I don’t think the state organizations which would include organizations, many of them tenuous in Colorado, Texas, Florida, New Jersey, Vermont, Wisconsin and maybe a few others are anywhere near creating a viable national group. I just don’t think it can be done. I’d love you to prove me wrong.”

There are some strong active state groups. I would not call them tenuous, even though I’m sure they work hard and may struggle at times. Certainly FLA, WI, CT NJ. They have conferences, put out newsletters and fund and even conduct research, really on a shoestring. Or why were you involved in starting another national org if the CAA is so good? Why would the mere thought of any other national organization be completely inconceivable? Has happened in other illnesses. We have had a few false attempts for sure but does not preclude the possibility.

cort 08.12.09 at 6:21 pm
Cort: “I agree Jill that the CFID’s Associations federal efforts at advocacy have not paid off. Funding at both the CDC and the NIH has tanked and I heartily believe that the CFIDS Association should’ve highlighted that and attempted to engage patients in that issue much more than they have. Bringing the CFS research program to the Office of Research of Women’s Health has turned out to be pretty much a disaster. Getting a scientific institution such as the NIH which Congress in general specifically shies away from attempting to influence is obviously very tricky. It’s not easy to exert political influence in that area. Nevertheless the CAA does not get good marks for the effectiveness of its federal advocacy program!”

What does it get good marks for? I am not being sarcastic.

Cort: “Yes the CFID’s membership has declined and I do believe- as I noted earlier – that they lost something when Mark Iverson left the organization. At the risk of sounding defensive I would note that over the past 15 years or so that many support groups have disappeared. ME/CFS was in the news frequently in its early years. As I remember it made the cover of Newsweek or Time, the Rolling Stone did a feature article on it, there was a three-page article in the San Diego Tribune, Tom Hennessey appeared on Larry King! The ‘Yuppie Flu’ was news. A dramatic decline in membership across the board, from national group to local support groups as this disorder moved off the newsfront was inevitable. More than that, though, probably contributed to the decline in the CAA’s membership.”

The decline in membership is the result of the problem not the problem itself. The CAA is not a support group – it has paid staff, a paid lobbyist and considerable resources. Many orgs have become successful through local charter groups. The CAA does nothing to engage or support the patient community, as Mary said, which patients have been suggesting and requesting for years. Mark left 8 years ago, so they have had plenty of time to redeem themselves, but membership has been steadily plummeting ever since.

Honestly as bad as they are politically, my real problem with them occurred way before I really knew or cared much about the politics. When my daughter was first diagnosed, I joined and subscribed to everything (this was late 1990′s before so much info was available online). I rather quickly realized that I just could not relate to the Chronicle (the CAA newsletter). Kids generally got better in a few years was the general assumption. It was predominately stories about remarkable recoveries, people mountain climbing and glossy pics of triumphant pple who reached the top. A good deal was the hopey-copey feel good yaya. But didn’t relate to what we were experiencing or as I soon learned what were the experiences of many others. (I still doubt their perspective on the illness. It is serious symptoms (as opposed to a serious disease) that can be managed by meds, lifestyle and attitude. Saying it is real and serious and debilitating is a red herring – so is depression and mental illness.)

I tried to engage the CAA especially on the kids issue but soon realized they had their own agenda. When the CDC scandal broke, CDC was planning a large study on children, but dropped it ostensibly due to lack of funds. I tried to get the CAA to push for the resumption of the study even when the money was restored but they were not interested or concerned.

Cort: “When Hilary Johnson proposes that the CAA is part of a pogrom against ME/CFS patients, however,balance I think it’s important to point out just who she’s talking about. It’s not just about Kim McCleary. Hilary is talking about people who have had this disease for decades, who have seen major portions of their lives virtually wiped away, who would like nothing more than to see its eradication. That’s crazy thinking.”

It IS really about Kim mainly but the CAA in general. It makes no difference who these people are, it’s their collective actions that matter. They did what they did (or did not do) and objective observations as such are not crazy. We have to believe what we see, not see what we believe.

All that comes to mind is that the CAA was for it before they were against it, as they say. The CDC program has been equally bad all along, nothing much has changed in content or leadership or direction. The CAA was heavily invested in the CDC for years. They loved the CDC – gave the research program rave reviews. The CAA has historically been referred to quite routinely as a CDC subcontractor or the PR arm of the CDC. For years they were taking in far more money from the CDC than from membership dues. He who pays the piper calls the tunes.

Cort: “As I noted earlier I disagree with the popular notion that the CDC is all bad. That’s not what I see when I look at the research. There are periods of time when the CDC has done innovative, creative research and there are periods when they haven’t. You forget that the CAA was in the thick of it during the GAO scandal – using their congressional contacts to help ensure that that the problems were exposed. It was just 10 years ago they were helping to uncover a scandal at the CDC that ultimately resulted in the director of the CDC resigning!”

The CDC CFS program has been historically bad, inadequate and lacking in scientific merit. The CAA was part of it, attending meetings, participating in peer review panels, pretty much insiders on everything. Notice Kim’s name on the demeaning, inadequate Fukuda “fatigue” definition. The CAA did not expose anything. They just jump in whenever anything is about to happen and and say they did it to take credit.

Cort: “Hilary Johnson calling the CAA an enabler of the CDC when they’ve been at the forefront of exposing two scandals at that organization made me drop my jaw. I assure you the CDC does not believe the CAA is their enabler! They believe the entire public review session was set up by the CAA to embarrass them. Bill Reeves implied just that to me.”

Hillary again is an investigative journalist, not a fiction writer trying to sell stories. Would say this is an apt description based on her objective thorough observations. Again the CAA was not at the forefront of anything. This is just their story. Repeating lies does not make it true. CAA has been a useful tool of the CDC all along. Why are they referred to as “charlatans?”

Cort: “I believe that the CAA has, in the main, acting quite appropriately towards CDC; when evidence of malfeasance in the late 1990s showed up they lead the charge to expose it. During the period when the CDC was receiving payback funds and they were doing the research that resulted in the Pharmacogenomics reports the CAA focused its critiques on the NIH. When evidence once again showed up of the financial problems and poor productivity at the CDC the CAA refocused it’s efforts on the CDC. My experience is that the CAA has shown a quite nimble approach to the CDC.”

Well they can’t have it both ways which is exactly what happened. They were part of it now they complain about it. They always manage to play both sides and play to the audience. Same rhetoric and misinformation. They did not lead the charge. They ran damage control for the CDC when the first scandal broke – would say most likely they cut a deal with Reeves with the whistleblower thing to make them both look like heros and placate the patient community into believing that all is well. Their lucrative no bid contract was the thank you.

For example, when the contract was awarded to the CAA a few years back I was at the CFSAC meeting and questioned Reeves as to why (it was just announced after the fact) and what would be the oversight of content etc. Reeves went ballisitic (knocked over a chair) and said “because they asked” and accused me publicly of infighting and attacking the CAA. It was so bad that I complained to HHS about his rude, unprofessional behavior. Yet now the CDC admits that this contract was a failure.

Cort: “What I’m asking for is balance – for a recognition of the strengths and weaknesses of that organization. I think I’m providing that. I think if we look at the CAA objectively we’ll find an organization that has some real strengths, that has been quite innovative at times and has produced some real accomplishments. We’ll also find an organization that has its weaknesses – that could be better at communicating with patients and advocates, that has not embraced some roles that would have benefited the patient community and that has not taken advantage of the opportunity that the Internet provides.”

No you’re not, you’re telling people what to think. That is not balance. We can recognize the strength and weaknesses but we can not make it come out balanced. Looking objectively is not trying to say it’s balance by spin and make excuses and parroting their revisionist history. It’s way beyond the well they have some weaknesses and maybe could have done better here or there. Saying they’re not all bad does not mean that they are good. Hitler probably did some good things for Germany. But in the balance, no.

Cort: “That is the kind of discussion that I think we can all benefit from because we all benefit from having a strong national organization
The upside to that is enormous. This is one of the reasons why I was so disappointed to read Hilary’s remarks.”

Of course we would benefit from a strong national organization. Truth is that we do not have one. A discussion cannot make it so. Hillary spoke the truth. Sorry you were disappointed to hear it. We all are.

Jill

.

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cort August 13, 2009 at 10:44 am

Jill I did not say all the groups were tenuous I said some of them were. You made my point when you were only able to find four strong state groups. I am always interested in increasing the dialogue regarding ME/CFS particularly regarding federal advocacy. As I noted earlier its clear that the CAA’s efforts in that area have not been particularly successful. I do not consider that a reason not to support that organization!

Again, the CAA gets good marks for

  • Compelling the CDC to create a nation-wide media program
  • Compelling the director of the CDC to get up on a national platform and state CFS is a legitimate illness
  • Compelling the SSA to create a special ruling for CFS
  • Compelling the NIH to create a full advisory committee for CFS (CFSAC) – one of the few in existence for a disease
  • Ensuring that the CFSAC was maintained when it was under attack
  • Playing an important role in the GAO investigation of the CDC in the late 1990′s
  • Financially supporting many conferences on CFS
  • Grassroots advocacy section
  • Extensive Youth Section on the Website
  • Dynamic and popular Facebook site
  • Creating a successful Physican Education Program on Medscape
  • Providing excellent resources for patients in the E-link and Chronicle
  • Creating a successful Research Initiative that raised a million dollars for ME/CFS – which translated into cutting edge research projects
  • Hiring a major researcher to lead their Research Program
  • National NoMore Campaign taken to cities across the country
  • Winning several awards for efficiency – often a bane for non-profits
  • Monitoring the CDC program and undercovering the financial irregularities behind a drop in productivity, calling for new leadership and proposing the program be moved to a different part of the CDC
  • I probably left some out. Saying the CAA does nothing to support the patient community is ludicrous. Think of what you’re saying – the Chronicle, the E-link, the advocacy efforts, the efforts engage the media, the NoMore campaign, etc., etc……Then the gossip about Reeves… CAA cut a deal, conspiracy theory stuff….Gossip! My understanding is that the CAA was the only group to bid on the media contract! Your statement that the CDC has always been bad may win cheers from many ME/CFS patients but is just plain wrong in my opinion…..your problem that the CAA gave rave reviews to CDC – well at that point they were doing good work…….your inference that the CAA does not care about kids because they didn’t back your project….the CAA has a Youth Home page, a rather large Guidebook for Youth, a resources section for youth, etc…..playing the Hitler card at the end is unworthy……(so much for a conversation weighing their merits and faults!)

    Reply

    Jill McLaughlin August 13, 2009 at 1:06 pm

    I feel that major issues are being missed or misrepresented.

    cort 08.13.09 at 10:44 am
    Cort: “Jill I did not say all the groups were tenuous I said some of them were. You made my point when you were only able to find four strong state groups. I am always interested in increasing the dialogue regarding ME/CFS particularly regarding federal advocacy. As I noted earlier its clear that the CAA’s efforts in that area have not been particularly successful. I do not consider that a reason not to support that organization!”

    I only mentioned them as example, not that there aren’t more. And it is actually a very good reason not to support them. Paying a lobbyist $200,000 a year with no results?
    People may have a problem with that!

    Cort: “Again, the CAA gets good marks for
    Compelling the CDC to create a nation-wide media program
    Compelling the director of the CDC to get up on a national platform and state CFS is a legitimate illness
    Compelling the SSA to create a special ruling for CFS
    Compelling the NIH to create a full advisory committee for CFS (CFSAC) – one of the few in existence for a disease
    Ensuring that the CFSAC was maintained when it was under attack
    Playing an important role in the GAO investigation of the CDC in the late 1990’s
    Financially supporting many conferences on CFS
    Grassroots advocacy section
    Extensive Youth Section on the Website
    Dynamic and popular Facebook site
    Creating a successful Physican Education Program on Medscape
    Providing excellent resources for patients in the E-link and Chronicle
    Creating a successful Research Initiative that raised a million dollars for ME/CFS – which translated into cutting edge research projects
    Hiring a major researcher to lead their Research Program
    National NoMore Campaign taken to cities across the country
    Winning several awards for efficiency – often a bane for non-profits
    Monitoring the CDC program and undercovering the financial irregularities behind a drop in productivity, calling for new leadership and proposing the program be moved to a different part of the CDC”

    Again — they did not do many of these things – they just say they did. Their information is tepid at best. These media campaigns are basically useless. Calling for the program to be moved? There’s another of their misguided, poor judgement disasters in the making. To the office of prevention and health promotion? But their contract ran out with Reeves division so guess they could try again over there. They cannot count on membership dues for support.

    Cort: “Saying the CAA does nothing to support the patient community is ludicrous. Think of what you’re saying – the Chronicle, the E-link, the advocacy efforts, the efforts engage the media, the NoMore campaign, etc., etc……Then the gossip about Reeves… CAA cut a deal, conspiracy theory stuff….Gossip!

    It’s not conspiracy but a very likely scenario. You really believe that Reeves, what, a hard core seasoned, 3rd generation government official really needed the CAA’s “help?” THAT is ludicrous. So yes it worked out quite nicely for both of them.

    Cort: “My understanding is that the CAA was the only group to bid on the media contract!”
    Sure. And why is that? Probably because they were the only ones who knew about it.

    Cort: “The CDC has always been bad…..(no facts to refute that assumption)”. Your statement that the CDC has always been bad may win cheers from many ME/CFS patients but is just plain wrong in my opinion…..”

    And why would that be? Most patients are out of touch and unaware?
    No facts you say??? Saw no need to list them. Most everyone else apparently is familiar with them.

    So to refresh your memory:
    They have failed to do the basic epidemiology on the illness, they have failed to recognize an illness which has been well established (ME) so they renamed it and redefined it as a bland fatigue syndrome and pretended it was new (thereby obliterating the history, codes, clinical knowledge etc. and focusing on a few symptoms which are vague and ill defined and overlap with somatic syndromes — Redefinition Accomplished!), they have failed to properly investigate outbreaks and clusters, they have failed to recognize or acknowledge the work of well respected researchers worldwide, they have failed to recognize serious abnormalities which have been discovered which can have serious health consequences for patients, they have failed to conduct clinical trials which would lead to real treatments, not just lifestyle management, they have failed to educate physicians or the medical community or the general public beyond some slick PR campaign which benefits only the CAA and keeps them in business, they have collaborated and partnered with the Emery Psych Dept and the psychobrits. For starters.

    Cort: …..CAA gave rave reviews to CDC (at that point was doing good work)…….

    Really? See above. Your contention is that they were good when the CAA was supporting them but now they are not good. OK. When? This is the key. So what has changed. If you know, then what happened to change the CAA’s mind? Where is the demarcation between good and not good? What happened or did not happen. When did they become bad and why?

    Cort: “CAA does not care about kids but they do have a Youth Home page, a rather large Guidebook for Youth ….but they did not back Jill’s suggestion so……”

    MY suggestion??? To do the most basic epidemiological research? Unfortunately perhaps it was my suggestion, which is sadly the problem. They don’t care enough about kids to support or push for any research on them, so yes. Though a good many parents shared my “suggestion” as well. Their Hitler Youth Home Page — oops I mean Youth Home Page (sorry just couldn’t resist that one!!!!) is very superficial. As a parent it comes up way short of any real purposes.

    Cort: “Then playing the Hitler card at the end……(so much for a conversation weighing their merits and faults!)”

    That’s exactly what the discussion was and is. It was not playing any card as the meaning of the analogy was obvious. One comment does not negate the rest of the dialogue. Yet you launched into a sexist attack on Hillary as being hysterical and over the bend and beserker to disingenuously detract from her argument and assertions. Let’s not have another ploy to do the same.

    Jill

    .

    Reply

    cort August 13, 2009 at 3:16 pm

    Much of this is just more of the same. I think Jill and I have had our say.

    CDC - Where does that $200,000 come from? I’ve never heard a figure that high. I think Dr. Reeves with his job and career on the line wanted all the help he could get. I think the whole CDC misspending issue would have disappeared without Dr. Reeves coming forward – and putting his job on the line.

    We’ve gotten to the point where Jill and others are blaming the CAA for supporting Dr. Reeves for blowing the whistle on the CDC for lying to Congress about ME/CFS. They’re essentially blaming the CAA for helping to expose the CDC scandal!

    The CDC put the contract out for an open bid and got one bidder – that is my understanding. ME was not well recognized, it was a decidedly a niche topic despite your desire to portray it otherwise. I’m not arguing that the CDC is perfect -far from it – if you read my blogs you can easily see that……but on the other I’m not going to stick my head in the sand when they do good work.

    Why the CAA Took on the CDC – What happened with regarding the CAA’s support – so far as I can tell – is the productivity of the CDC’s CFS research program declined markedly. Dr. Reeves kept making promises he wasn’t keeping. He would say X project was about to start and then at the next CFSAC meeting would report the same thing and then do the same thing at the next one. Kim McCleary started wondering what was happening to these projects so she started digging into their data. She found they were spending enormous amounts of money for projects that were taking years to get started. The CAA also disagreed with the focus of some of the projects – they weren’t as innovative as before – and they began to cover such treatments as CBT, which the CDC had never done and which the CAA believes has been studied enough. Basically the CAA were paying attention when no one else was – not you, not me, not anyone.

    Throughout this discussion I’ve noted several areas I think the CAA could improve on. You have yet to find anything positive to say about that organization – which I think bears noting since they have been highly involved in many of the issues we deal with. I did appreciate your asking me to point out what I believe the organization has accomplished – a good question that opened some ground. I am clearly not going to enroll you in supporting the CAA.

    Accomplishments- Why do I think people should support this organization? Because they have provided and do provide valuable information and services to the ME/CFS community. It’s difficult or impossible to imagine any of the below happening without the CFIDS Association of America’s help: first CDC scandal, the Disability Ruling, the creation of the CFSAC, the National Media Campaign, The Medscape Physician Treatment Program, The National Press Club Event, the second CDC scandal.

    Why do I think that? Because although I wasn’t around to witness the first CDC scandal or earlier events I have been around since then and I’ve kept very engaged in this subject and I’ve come to the conclusion after several years that there’s really no one else out there. There are very few people walking the halls of Congress advocating for this disease. There are very few people keeping an eye on our federal programs and most of them work for the CAA. Not supporting that organization essentially throws this disease into the hands of federal officials that care nothing for it and scientists that have no interest in it.

    It says we will have no movement in major issues in the future. Why do I think that? Because if you look at the major events that we have had invariably you find the CFID’s Association is there. You can’t say that about any other group. There are no other alternatives - there’s no one waiting to step into the breach; there’s just you and me and a handful of people and we’ve all proven abundantly that we can’t get it done.

    No , we’re not where we want to be – not even close – but ceding our voice to the officials walking the halls of the Capitol is not a situation I would look forward it. That unfortunately, however, is the situation that, carried out to its logical conclusion, you and Hilary Johnson are fighting for.

    Culture of Destruction – The last thing we need is a culture of destruction yet that climate pervades significant portions of the community; from Hilary Johnson’s cruel blog, to the NCF’s rants against other groups, to Jane Bryant’s attacks on other groups, to your inability to admit that the CAA serves any useful purpose. What better situation for those that demean this disorder to have it’s groups attack each other – really what a ridiculous situation to be in!

    Reply

    Keith August 13, 2009 at 1:20 pm

    Hi. I’ve had CFS for 22 years now and have followed the CAA off and on during these years. Iwas a member for the first half of the years I had CFS but became dishearted by the organization and stopped being a member. Yes, I agree they have helped us in some ways. With the social security system an public awareness. I feel many of the studies they have funded have been excellent over time.
    They lose me in there advocacy work and the lack of progress I have seen them be able to make in having the CFS cause grow in the government and private sector. I mean for all the money they have spent on advocacy I was hoping by now that more progress would have been made. We should at least have a test for this illness or markers by now. I just don’t feel it has seemed pressing to the CDC or NIH to find one over these last two decades. I mean they are still studying things like linking CFS to childhood trauma and publishing studies showing CFS patients take more supplements then healthy controls. They should be beyond soft psuedo science studies like those that hurt more than help us.
    The CAA should have been pressuring them more to study useful avenues. Sometimes I feel in the attempt to work with the CDC they fail to hold them accountable until it is too late and 5 years go by. Then they realize the government is not lapsing again and it’s too late.
    Well getting tired but that’s just my thoughts
    Keith

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    Carolyn Richards August 13, 2009 at 4:41 pm

    I hope everyone on this list has read Oslers Web. It can provide some very important background. I used to get the CAA newsletter & was asked by them why I dropped my subscription. I told them that I must have something different than they were reporting on as everyone got well in their featured stories. They also spent alot of time patting themselves on the back. The CAA has been in & out of bed too many times with the CDC, depends on how the wind blows.
    Cort go to the other extreme & get the newsletters from the National CFIDS Foundation, there are always 2 sides to every story. One is political the other is sometimes more truthful.

    Reply

    Tom Kindlon August 13, 2009 at 5:04 pm

    I haven’t read this yet but saw a reference to UK charities and a claim that they are not interested in Dr Chia’s work. If one examines the CFSRF site http://www.cfsrf.com one finds: http://www.cfsrf.com/research-current.htm
    This work is a collaboration, involving a number of clinicians (see Clinical Team – list includes:
    Dr John Chia, Infectious Diseases, ID Med, Torrance, California)

    I get mail-outs from them and they mentioned that he is supplying them with samples with people affected by enteroviruses. The ME Association has a relatively small budget. ME Research UK is slightly larger but the studies they fund are usually quite small (there used to be a cap of £30,000, which would not go far in the US).

    The TYMES Trust is supporting some patients having themselves tested with Dr Chia and are interested in the angle. They are a very small group.

    Invest in ME had Dr Chia over speaking again this year for their conference.

    Reply

    Jill McLaughlin August 13, 2009 at 7:06 pm

    Cort said: “Because although I wasn’t around to witness the first CDC scandal or earlier events I have been around since then and I’ve kept very engaged in this subject and I’ve come to the conclusion after several years that there’s really no one else out there.”

    But think the problem is that you were not around. You can believe what you want but people should be allowed to know and discuss these things. If I believed what you believed (which I know is what they tell people) I would probably be OK with them also. As Megan and Mary I think just mentioned also (since they have been involved longer that I have), the CAA did not do the things they claim to have done. The first CDC scandal was exposed by Hillary in Oslers Web as well as by patients over time. Hillary is from New York and she is the one who contacted and engaged Rep Nadler, who I think considered an investigation. I do not think that the CAA supported it. But Hillary should explain the details. Actually the CAA panned the book and was condescending to Hillary – because from her objective uncovering of facts she was not complimentary to the CAA. No one at CDC lost their job or resigned, one person (Brian Mahy), was just reassigned within the CDC. Nothing happened really. And nothing changed.

    When the first CDC scandal broke, Kim was on the CFSCC, the prior advisory committee, always claiming that the CAA was holding the federal health agencies accountable. Reeves/CDC has been doing these things for years. When the money was restored there was ostensibly all kinds of oversight. So who was keeping watch. The CAA obviously was not as it is the same thing all over.

    The CAA did not uncover the latest CDC debacle, it was the CFSAC. It is in the minutes. The CFSCC did the disability ruling, not the CAA.

    I do not think that anyone is walking the halls of Congress. The Sheridan group did Lobby Days but do not know if they did much else. Though I do not know. But Pandora does as well as other state groups.

    But seriously, what happened for the CAA to change their mind about the CDC? I would like to know. That is the issue. They have never said what it was. They just started saying what patients have generally been saying for years in the generic sense but not specifics. It was a very abrupt reversal of position. I’ve not seen any earth shattering event or changes whatsoever with CDC’s position to account for or precipitate it.

    I do not think it is destructive to look seriously at situations that have profound effects, even if it is negative. I think we are on our own. Like the saying “those who do not remember the past are condemned to repeat it?” And we have several times. I do wish that the CAA would change but do not see it happening. From my experience I do not have any trust or respect for the NCF, but they really are not much of a concern. Have heard patients say that as a general rule of thumb they just have given up on and do not support any of the “CFIDS” groups.

    Jill

    .

    Jill

    Reply

    Mary Schweitzer August 13, 2009 at 8:56 pm

    Cort – try to listen to what people are saying – particularly if (as you admit) you weren’t around for it.

    What CAA did that was bad was to support Bill Reeves in his bid to be the whistleblower for a scandal that HE HIMSELF was responsible for. Having whistleblower status in Washington is akin to having a Diplomat license plate – now Reeves can get away with anything, and he is.

    What is important is what is happening now. If the CAA wants to represent its constituents, then I expect to see them in there fighting to get rid of the influence of osychiatrists in government policy towards this very serious disease that leaves us with incompetent immune systems, beseiged by viruses, with serious brain, CNS, and cardiopulmonary problems. Psychiatrists don’t belong in my disease – and the head of the CFS Program should not be so enamored of psychiatry (not his field) that he is moonlighting in the dept of psychiatry at Emory.

    If you don’t know enough about what has happened in England to find that frightening – then you don’t know enough about this subject.

    If you actually think CDC’s not been so bad, you must have pretty low standards. In 20 years they (a) failed to recognize and follow the cluster outbreaks, (b) adopted the hopelessly inept name CFS, (c) by their own admission left at least 850,000 Americans in the dark about their disease, and…. TWENTY YEARS into studying it, they insist “there are no tests and there are no treatments.”.

    Finally, who has CBT heloed?? Do you have a friend? Long term studies show it doesn’t even help with depression. The 25%ers in England can tell you what CBT has done for them; people thrown into mental hopitals for not being cooperative can tell you what it’s done for them, testimony sbmitted opposing the NICE guidelines told what was wrong with CBT and GET as the only options offered, and certainly Malcolm hooper and Margaret Williams can tell you what’s wrong with the theories of British psychiatrists Simon Wessely, Peter White, Michael Sharpe, Trudie Chalder, and Anthony Cleare – all of whom have served as consultants for CDC when David Bell. Peter Rowe, paul Cheney, Dan Peterson, and many other American experts were ignored.
    And now we have our own psychology cabal – Christine Heim, who insists CFS is a kind of post-traumatic stress syndrome, particularly regarding childhood abuse. Reeves and, I believe, Jeff Jones are both now on Emory’s psych department.

    THIS SHOULD FRIGHTEN YOU. I am mystified why it doesn’t.

    But if CAA has any gumption, they can staert with an issue devoted to the way psychiatrists have overtaken out disease, how that has hurt patients in England and how we have to fight it before it grts entrenched here.

    Then there was the Ryan Baldwin case right under their noses in Charlotte, NC. He was taken away from his parents, charged with “factitious illness by proxy” (deliberately making him think he was sick. After Cheney testified, they had to admit he was sick and dropped the “factitious illness” part – but then they declared the mother dependent on the child being ill and took him away anyway. He’s been in foster care since January.

    And we need more information about Myagic Encephalomyelitis, about a definition for M.E. and recognition of it in the U.S. – or at least acknowedge that the concept ” CFS” caused immense problems outside the U.S. For people with an M.E. Diagnosis.

    and more information about ME/CFS and the Canadian consensus document.

    Have they mentioned that a group of British osychiarists are working with American osychiatrists to get a disease category for CFS in WHO’s ICD-11, the next version of the coding system (which our insurance companies use) that would be compatiblee with osychiatry’s DSM-V?

    We need to know these things.

    Mary Schweitzer

    Mary

    Reply

    cort August 14, 2009 at 8:03 am

    CBT - Of course CBT has helped people. Dr. Natelson, Dr. Bested, Dr. Klimas, Dr. Antoni…even Dr. Van Hoof who believes it’s efficacy has been overstated, all report that CBT is helpful to some of their patients. A recent study found that CBT erased the brain volume problems in ME/CFS patients. Dr. Peterson acknowledged that it could be helpful and told me he just doesn’t know any CBT practitioners. I’m sure he’s not scouring the woods looking for them. He doesn’t think its the answer! That CBT can be helpful for some patients is not news! There are many research studies showing that it can have benefits. I’m not saying its a cure!

    Different Situation in the UK – Obviously the CBT situation is different over in the UK. We don’t have a research community permeated with the idea that CBT is the only treatment for ME/CFS. We have a research community – even in the CDC that you detest so much – that, thus far, has primarily been focused on physiological studies.

    US Emphasis - This is the CFID’s Association of America not the UK.Why would a US organization that is dedicated to providing information to its clients in the US, and receives its funding from individuals in the US, focus on issues in the United Kingdom? Sure they could – but why would they?. Do UK support groups spend their time elucidating problems in Australia or Germany or Spain? Of course they don’t. The CFID’s Association istrying to give American patients the information they want and need. Most American patients probably are not very interested in the UK’s problems. They are interesting in finding solutions to their problems. Sure it would be nice but to have that be an expectation is unrealistic I think. It’s hardly a reason not to support that organization.

    Even handed Approach to the CDC - I said the CDC at times has done very good work and at times not. I said we should be even handed towards every research group? I am willing to do that – are you? Yes Dan Peterson and Paul Cheney have not shown up at the CDC but Nancy Klimas has sure been there. Anthony Komaroff has been there. Renee Taylor has been there. I realize that that the CDC is not collaborating now – but they were before. When they were I say good for them. Now that they’re not – my approach is the opposite – as you well know.

    Maybe our expectations are different. I expect federal institutions to be very conservative. I don’t expect to see Dan Peterson or Paul Cheney or anyone like them – to work at the CDC. I just don’t expect that. I hope for slow incremental change.

    Peter White – This thread started because you used a short article by Peter White in one of the Chronicles as a reason not to support the CAA. That kind if issue is not even close to being a dealbreaker for me. The CAA, as you know, presents enormous amounts of material in their E-link and Chronicle on research topics; 95% probably is on physiological issues – something you favor greatly. What I am looking for coverage of the different issues in this disease – something they do admirably at.

    Not a Perfect Organization – I’m not saying that CAA is perfect. I am saying that it is very much in our interests to support them. I’m also saying that they do do alot of good work. Sure they could be bolder. One of the reasons I was interested in that group I alluded to in an earlier comments which quickly fell apart is that I feel we do need a more confrontational group. I feel we need a voice that is confrontational and yet responsible.

    Suggestions for Change – The CAA has not focused on a number of issues that I think are important. They not made declining funding at the NIH a big issue. Nor have they used their bully pulpit to explore the problems at the NIH. Nor have they used it to really dig into the CBT issue. I do think it would be valuable for them to note how much sway CBT holds in the rest of the world and how injurious that is.

    If I was them I would put treatment rating system on the website immediately. It would cost a couple of thousand dollars – something they could afford. I’d put a physician referral system – which would cost another couple of thousand dollars.

    They should outline the deficits in CDC website. (Of course don’t forget they actually went further than merely outlining the poor treatment options – they actually created a physician education program on Medscape!).

    Fight the Rumors! – They should provide answers to the rumors floating around the web regarding them such as ‘Are you in bed with the CDC‘? ‘What is your relationship with the CDC‘. (How that rumor still persists boggles my mind.) ‘What are you discussing when you meet with them.‘ This is a very suspicious community; Their unwillingness to publicly these issues has hurt them terribly. It’s allowed people to make assumptions that are illogical on the face of them but still catch on; as in the CAA is using the money from the Media Campaign and Treatment Provider Campaign to run its organization and that its going to fall apart once those programs end. obviously it would be to their own advantage to be more open.

    A Dynamic Organization – Sitting on the outside I would do alot of things differently. Maybe if I was on the inside I wouldn’t. But that doesn’t mean that they not doing alot of good things as it is. It doesn’t mean that they’re not a dynamic organization as well. It doesn’t mean that they shouldn’t be supported vigorously. The Perfect is the Enemy of the Good.

    Reply

    Jerry August 13, 2009 at 10:39 pm

    I was a member of the CAA from it’s inception when Marc Iverson got the mailing list from the Portland group. Like many others in this thread, I became disenchanted with the CAA and surrendered my membership in the ’90s. Long before Iverson did but, again, for many of the same reasons. This was probably about the time Kim McCleary started gaining her authority over the CAA.

    The only chance the CAA has of ever becoming a viable national organization again is to start by divesting itself of Kim McCleary and the many years of mistrust (justified or not) associated with her sovereignty over the CAA. Just as the CDC must alleviate itself of Bill Reeves.

    Even then, I doubt that the CAA will ever supersede the progress that the newer groups and institutions like PANDORA, the WI CFIDS Association, the IACFS/ME and the WPI, as well as others, have already quickly achieved or are poised to achieve.

    The CAA is a dinosaur. A lumbering bus. It’s time has come and gone. These new orgs are like nimble sports cars. They corner well. And from them we will probably see a new national organization arise.

    Reply

    bananaman August 15, 2009 at 8:54 am

    Jerry from RESCIND (never a friend to the CAA!).

    Lumbering Bus – Research Initiative/Medscape Physician Program/Disease Group Alliance/CDC Scandal/Media Campaign/Facebook – lumbering along…..

    I love all those organizations….WPI indeed a nimble research organization, WICFS/ME – with Pat Fero rocks!, Pandora with Marly Silverman – always dynamic – IACFS/ME – lagging in almost every regard….. Aside from the WPI – which is focused entirely on research – the others, as good as they are, are not in the same ballpark. Just give me your list of accomplishments…….

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    meghan Shannon August 14, 2009 at 9:38 am

    Cort , The CAA and Ms McCleary did NOT break the news of CDC’s financial mismanagement as you say below.

    Cort said; “The CFID’s Association and Kim McCleary, of course, after months of research broke the news of the CDC’s financial mismanagement and lead the way in calling for the program to be moved and new leadership.”

    Congressman Nadler broke the news in the opening session of Congress April 1996.
    I “broke” the news at the CFSCC meeting with Dr. Philip R. Lee. I had a private meeting with Dr. Lee two days later.

    Reeves went to the CEO of CAA Ms Kenny/McCleary for support to blame Dr. Brian Mahey for miss appropriations of funds at the CDC. There by giving Reeves Whistle Blower status at his place of employment, the CDC.

    I realize you were not there at the time, I was and so were a lot of other people.
    All you need do is ask for confirmation from those who were there (over 300 patients and Gov’t workers) and from the CFSCC min.

    Again you were not there.
    Meghan

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    cort August 14, 2009 at 2:03 pm

    Again, Meghan, I was not referring to the earlier CDC scandal – I was referring to the one that occurred this year. Congratulations on in helping to ‘break’ the news!

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    Mary Schweitzer August 14, 2009 at 10:44 am

    One last effort at dialogue and then I quit:

    1. We both agreed we need a local—state—national organization, and perhaps we can work to get that.

    2. The pediatric study Jill mentioned that CDC refused to do was mandated by Congress, and was one of three studies whose funding went elsewhere, causing the GAO investigation. (The other two were a study of minorities and a study of the impact of CFS on pregnancy.) Yes, CAA and Kim did join in enthisiastically. But they acted as if they were the only activists fighting this. They did not give credit where credit was due, and in particular they allowed Reeves to portray himself as the hero, as a whistleblower (a formal deaignation in civil service which makes it very dificult to fire you later for bad behavior) – when it was Reeves’ program that caused the problem. And after the money was restored there was a meeting to discuss it – Reeves stated then and later he had no intention of resurrecting the stusies of children, minorities, or pregnant women – he said it would be a waste of money. HE was responsible for the diversion he supposedly blew the whistle on, and when the money was restored, he deverted it again. Where does CAA come in? They gave him cover, praised him for being a whistleblower, and never asked why those studies were permaently buried. Believe me, others awaree of the malfeasance – Meghan, Hillary, the NY CFIDS group, Neenyah, and Congressman Nadler, would NOT have let Reeves get away with it. But CAA did and does pretend that they were the ONLY ones involved in calling attention to the CDC”s misallocation of funds.

    3. I had enough information to ask for Reeves’ removal over a decade ago (and in Meghan’s statement to the CFSCC’s first meeting in 1996, she said Straus and Reeves had to go), so I’m not excited that CAA suddenly has discovered this cause. Is it possibly related to CDC’s revocation of education funding from CAA to a private NY PR group that CAA HAS, in its defense, demanded get investigated? I think Kim made a pact with the devil (rhetorically speaking), and thought she could keep Reeves under control while he was keeping her under control during the period (over a decade) they collaborated.

    4. Why should CAA, acting as THE US national organization, have educated itself about policy and the disease in Europe?? Well, for one thing Straus and Reeves were involved in overseas collaboration and when in England said things that would have been eye-opening in the U.S. Reeves chose England for his first major speech saying CFS was due to childhood abuse, particularly sexual abuse – that 40% of CFS was directly caused by child abuse. Time for a heads-up. But it’s a typical American error to be focused just on ourselves. If you knew about the history of MS, you really have to wonder why CDC and Srraus at NIH chose CFS. Then when you see the damage “CFS” has done in England it would break your heart. But in that same oversized issue (that let Peter White expound on the value of Cognitive Behavior Therapy, or CBT, for pwc’s), they actually listed Ramsay’s definition of M.E. as a definition of CFS! That’s just ignorant. And UNUM uses the same British psychiatrists for categories, like MUPS(medically unexplained physical symptoms) to put in American disability contracts so they can deny coverage to Americans with CFS. Might have helped your constituents for CAA to have known about – and protested – that development. And all those studies claimong CBT is useful were done using the British definition of CFS – which excludes any physical problem and includes patients with depression. But what happens in England has nothing to do with what happens here – and nothing WE do impacts them (like Stephen Straus of NIH promoting the CDC’s concept of “CFS,” while approving the British definition, on a talking tour in England). No, We Americans live in a little protective bubble that has nothing to do with the rest of the world.

    But now our ignorance of what happened in England is abot to blow up in our faces. Remembee the recent article about whether teens with mono have a greater risk of chronic illness? I wrote the corresponding author suggesting they follow the subjects longer than five years and mentioned the cluster outbreak children – he shot back with an email that said he had no idea what I was talking about, and that the only “cure” for CFS was “CBT/GET” – that means the British combination of cognitive behavior therapy (British style) and graded exercise therapy. He’s at Northwestern, which is a prestigious university, and now all his students will learn this. Where did HE learn it???

    What happens in Britain is already impacting us, and our national advocacy organization should be on top of it.

    Mary Schweitzer

    Reply

    cort August 14, 2009 at 2:01 pm

    I assume the CAA promoted themselves as enthusiastically as they could. Did they neglect to mention others? Possibly. Does the CFID’s Association have a pattern of doing that? That is what I hear from a few advocates again and again. Yet I read their special 20th Anniversary history of the movement and virtually everyone I can think of was mentioned. Tom Hennessey and Rescind – who never had a good word to say about the CAA is in there. Marc Iverson is given plenty of space – with no negative comments. In print, at least, they did a pretty good job at spreading the praise around.

    So Kim McCleary made a pact with ‘the devil’. So? Did she had have any other choice? If she didn’t why are you using that as issue? To me this is a very strange argument. Are you saying that when Dr. Reeve’s came to her to spill the beans on the diversion of funds from CFS – she should have refused to listen to him? You are right – as soon as the oversight period was over Reeves went south! But are you actually blaming Kim for using his testimony to prove the CDC was diverting funds?

    The study. The fact that Reeves decided not to do one study or another – and the CAA did not, purportedly push him to do that study – again, is not a huge issue me. Honestly I won’t have done a study on children either. We know that the rate of ME/CFS is lower in children than adults. In fact by 1997 three studies on the rates of ME/CFS in adolescents had come out – and had shown they had much lower rates. Given the state of science back then I absolutely would have focused my attention on adults. Its not like we live in a world of unlimited resources. We know that CDC did focus on epidemiological studies of adults and that the figures were startling. Would they have been as startling in children? No they wouldn’t have. In that case Dr. Reeves probably made the right decision.

    Pique or Productivity – You suggested that the CAA is retaliating because the CDC awarded the provider education contract to another company. That ignores the fact that the CAA broke off the relationship. It ignores the fact that they had a good reason for doing so – it was a crummy program – something you’ve stated for years. It ignores the fact that the CAA was in the process of creating a new program. (Something that appears not to have impressed you?) It also ignores the very substantial fact that the CAA had very good reasons to investigate the CDC; their productivity went way down, their studies never seemed to get started – nothing seem to be happening at the agency. I think poor productivity is a good enough reason for their investigation!

    UK. I’m not saying that what happens in Britain doesn’t effect us. Obviously it does. The fact that the CDC has ties to Dr. White and other researchers of like mind in the UK is, of course, nothing new. Nor am I surprised that they do so. They are a conservative, traditional institution. If those were the only ties they had I would have been more worried. If the CDC had taken a purely behavioral stance towards ME/CFS I would have been very worried. If they’d done that I’m sure that the CAA would have protested.

    CDC History
    – But the fact is they didn’t do that. The studies they did; developing gene expression technologies and doing gene expression studies and data mining and genetic profiling and cortisol studies and cytokine studies and sleep studies indicates that the CDC was not pursuing behavioral angle from 2000 to 2007. They may have not been pursuing the research that you preferred but they were not studying cognitive behavior therapy or exercise therapy or personality types either. If anyone wants to find out what the CDC was researching its easy enough go to their website and check it out.

    CBT and Immune Studies – I realize that they have helped fund CBT trials but they also funded the Dubbo studies which measured viral loads and immune functioning as people came down with this illness after infectious mononucleosis, Ross River virus and a bacterial infection. This study found that cytokine upregulation early in the disease is a key factor. Interestingly that is a primary focus of the Emory group – something that will no doubt be lost in advocates zeal in attacking them. Interestingly enough it’s also a main focus of the Whittemore Peterson Institute! And Dr. Maes. In some places the different groups are not so far apart – something you would never guess from the discussions you see on the internet.

    Going Backwards – Now Dr. Reeves appears to have embarked on more of a behavioral course with the child abuse studies and the upcoming CBT trials. The CAA has responded appropriately – slamming their five year plan again and again and expressly stating they do not favor more CBT trials.

    (Despite Hilary Johnson’s harangue of Dr. Heim’s paper Dr. Heim’s supposition is, oddly enough, that some trauma early in life causes the HPA axis to emplode resulting in immune dysfunction, poor energy regulation, etc. That fine point will, of course, be utterly lost. )

    Better Communication - I agree there are lots of worthy topics and the CAA could do a better job in covering some of them and in communicating them. They should be more confrontational in their publications and less cautious. They should uncover the CDC – UK connection – a fascinating subject that is not well known.

    The CAA, however, is not happy with the emphasis the CDC has taken – they have been very clear on that. They don’t want to see more CBT studies. They noted that Peter White was a terrible choice for the External Review Panel. You guys are in the same boat on several issue!

    You have spent pages and pages taking an organization to task that is nevertheless doing innovative research, that has created an excellent doctor education program using ME/CFS physicians, that provides excellent information on current research, that has the only grassroots advocacy center in the US, and that uncovered substantial financial malfeasance at the CDC and called for its director removal.

    Many of these things I know you support. Yet with the exception of your opening statement you have said not one positive thing about the CAA. Perhaps we’re just getting too argumentative but someone reading these pages could conclude that, based on your arguments, that they should have nothing to do with them. Is that what you want people to conclude?

    Reply

    meghan Shannon August 14, 2009 at 3:17 pm

    Hi Cort, “I was not referring to the earlier CDC scandal..”

    Are you a ware that the DHHS and others told CAA to disstance themselves from the CDC?

    The CAA is to close to the CDC and were told to stop releasing things concerning CFS and or ME. That the DHHS and CFSAC can do this without leaks from the CDC to the CAA.
    I am ending this conversation too. I have other projects to work on with advocacy rather then talking to someone who does not understand.
    thank you
    meghan

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    cort August 15, 2009 at 8:44 am

    The Department of Health and Human Services – the Department that oversees the NIH and the CDC – told the CAA to stay away from the CDC? (???). Were they warning the CAA to stay away or else? (???)

    I cannot understand the rest of your sentences.

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    Kelly August 14, 2009 at 6:22 pm

    I was going to reply to some of the comments with more specificity, but I finally decided “Why bother?” For a while there I thought I was reading the latest issue of the NCF Newsletter.

    There are clearly people who choose to live in the past and still hold grudges with the CDC and CAA, etc., who essentially are only hurting themselves and possibly their health (the CDC could care less about most diseases…isn’t that obvious?). Hilary Johnson has made a living doing this, so it’s not surprising she’s upset.

    Then there are open-minded people who choose to allow for the POSSIBILITY that the only ones in charge of our health care are ourselves, and that rather spending our lives, and draining our limited energy reserves by arguing about the CDC, and names, and lobbyists, and organizations, and the past, we turn to sites like Cort’s, that inspire us with new interviews and announcements and details regarding cutting-edge treatments and protocols that are actually helping people recover.

    It’s certainly understandable, but also very sad, that some people just can’t seem to accept the fact that people with ME, or CFS, or CFIDS, or ME/CFS…whatever label you want to give it for your own comfort…sometimes do actually completely recover. I know eight people in my local group of about 35 who have recovered. One is stuck at a plateau of about 70%, one is at 90%, but the other six consider themselves 100% well and are back at work. Two of these were sick for 16 and 17 years respectively.

    And yes, one woman, who is in her late sixties, even climbs mountains.

    Reply

    Keith August 14, 2009 at 7:22 pm

    Cort
    I don’t know how much of A GRASS ROOTS organization the CAA is anymore. If 1-4 million people in the US have this disease and they only have 4000 members which is down from 20,000 at one point that should attest to there usefullness and satisfaction with the CFS/ME population and are a far cry from grass roots. Sometimes when you try to change a dysfunction like a Reeves led CDC from within you become dysfunctional also akin to being in a dysfunctional family. I think this happens as the CAA tries to work alongside Reeves. Just my feeling that they need to fight for Reeves to be gone and start with new leadership. Reeves getting whistleblower status was a huge mistake in my opinion. He now feels he has Carte Blanche over the program and is leading it in a unhealthy direction for us. Thank goodness for the Whittemore Peterson Institute and Annette Whitmoreand Dr. Peterson. They are giving me renewed hope with there efforts but the CDS and CAA connection is often too cozy in my estamation which has not led to the results we have deserved over 2 decades. Anyway some of
    Hillary Johnson’s anger seems well founded. I’m angry too as I think we all areafter such a long struggle with the government taking this illness seriosly and the CAA sworking with an entity that quite often has hurt and betrayed us but has not allway been held accountable by the CAA in a timely manner. And William Reeves is no hero by any means. He is part of the problem. If the CAA does anything but try to get him out of there then they are working with someone who I really feal does not care about our suffering. I read that he seems dissinterested and not listening at the last CFSACmeeting. Thats not the kind of compassionate person I would try to work with if I were the CAA.

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    cort August 14, 2009 at 9:06 pm

    Low Numbers – Everywhere - I know what you’re saying Keith but after five years my newsletter only has about 3,000 subscribers; it’s absolutely free and I believe, its probably the single best source of current information on ME/CFS the internet….3,000 subscribers in five years. My website has much more information on ME/CFS treatment and research than the CFID’s site and is certainly in the top three with regards sheer volume yet it gets about 10,000 visitors a month. We have trouble getting more than a handful of people to the federal advisory meetings twice a year. Lobby Days had putrid attendance. You’ve got to wonder where everybody is; not just with regards the CAA but with this disease in general. They’re not at my website that’s for sure.

    CAA and CDC - You should be happy to hear that the CAA lead the charge to get Reeves gone. Mary Schweitzer didn’t and Meghan didn’t, the WPI didn’t, tne IACFS/ME was nowhere to be seen; only one organization was watching the CDC – it was the CAA. It was the CAA that dug into the CDC’s records. It was the CAA that got Congressman and Senators involved to put pressure on the CDC. If you hear otherwise you’re getting some very bad information (not an uncommon thing!)

    This whole thing about whistleblower status is probably overdone. Its been ten years now. The biggest problem to getting Dr. Reeves is that no one else very likely wants to take this program. This is the not the CFID’s Association fault; this is industry-wide. No one in the NIH is interested either. It’s a very difficult situation.

    Reply

    pat fero August 14, 2009 at 8:44 pm

    “My understanding is that the CAA was the only group to bid on the media contract! ”

    Hello….so much to comment on and I pick this…but, I asked Jeff Miller at the CDC why ON the CAA PR contract it says NO BID. I have a copy of the summary contract. He said there was no org with the capacity to do what the CAA could do AND that the grant writing required a vast amount of paperwork. There was no bidding. A small thing in one way, but not so much in another. IF that contract was an open bid, who else would have bid to do the job? (Not I, said the mouse) YET, at the time I resented the fact that it was a closed deal because I did not feel that the campaign strategy would work and because none of us had the opp to look at what was being proposed.

    NOW, I am not a consensus person. That works in an ideal situation when time is not a factor. Sometimes, Ya just have to take over and do a thing. BUT, in Spring, 2006,when I heard the whole media campaign strategy presented by the CDC, CAA, and the marketing people from CDC, CAA, I thought, what are these people thinking? I talked with Kim directly about this just to have some input. It was just ODD, as ODD as Dr. Reeves powerpoint at the same meeting, as ODD as the praise for it by many CFSAC members and everyone walked away feeling happy happy, happy. Well, not everyone. I was puzzled and my teacher self waved red flags. One must decide on the end goal and work to get there with 4 different plans because one cannot control the variables. 4 million people. I just did not believe it. If that many people had the CFS I know, we would not have needed a PR campaign. I still have no idea what they hoped to accomplish. Had those meetings been podcast, it might have been different. The ORC complaint for meeting accommodations was almost 2 years old at the time.

    Lastly, the push, pull of this, having no opp for an opinion and knowing all along that certainly our ORG could never accomplish such a thing, was hard, IS hard. WI is still here, but we have 3 speeds, slow, slower and stop. It is what it is.

    Lastly ::) I don’t want to enter the CDC frey. The dino’s remember a lot which helps us understand…but I still think that the NIH as public health research institutes…all 24 that fund research, set us adrift. I think I know why and I am writing a final paper on it after 5 FOIA requests. SO I best concentrate on that.

    The open dialogue good…name calling bad. After watching the news and hearing the nazi calling over health care as a cover for institutional racism (My opinion) I do not want to read about it, too – from anyone. Gives me the shivers.

    THANKS to you all. It takes like an hour to do one post.

    PATF

    Reply

    Keith August 15, 2009 at 3:26 am

    Cort
    Hey in 5 years you only have 1000 people less than the CAA has in over 20. Why because your doing a great job that people respect and appreciate. I don’t know where everyone with CFS has gone. But a lot of the CFS material on YOU-TUBE Ive seen often has like tens of thousands of hits.
    I think I’m a perfect example of someone who sort of at some point gave up giving energy, time and money to the CAA and NCF because I found them not really functioning well. I live in Mass and we used to have a support group on Cape Cod about 15 years ago which also disbanded around the same time the CAA’s membership started going down.
    We have such limited enery I think we want to spend it on something hopeful and supporive and for too many reasons for me to write about the CAA stopped giving me that feeling a long time ago.
    I can’t understand why Reeves would be the only one that wants to take the program. It seeems like there would be a private sector researcher or doctor that would be interested. If a doctor Komeroff or similiar CFS resercher had been asked and given the funds over the years would not that have interested them? I would think some medical scientists would love the challenge.
    Anyway Iknow your working hard with limited energy and getting some heat on this particular post but the discussion you’ve started is good.

    Reply

    cort August 15, 2009 at 7:43 am

    I think people are very frustrated at the lack of progress for them personally and with the disease as a whole. When nothing dramatic happens – when you can’t see the results in your personal life then I think it’s easy to disengage. But I look at all these issues constantly – that’s what I spend my time on – and when I look at the broad picture I find I really respect and appreciate the job the CAA is doing.

    Progress – That million dollar Research Initiative – was a very bold move that worked out. Those research projects are a gas (I’ll focus on them in an upcoming edition of the Newsletter.) The success of the Physician Education program surprised even Medscape. The physicians that went and are going through that program are treating thousands of ME/CFS patients. that makes a difference. The CAA uncovered the facts behind the recent CDC scandal. Even their E-link newsletter – I always find interesting stuff in there. Their Facebook site has turned into a great source of information and an excellent place for people to interact. They joined an Alliance of other controversial diseases such as TMJ and IBS, I believe to try and maximize their impact.

    Things are happening. They’ve done alot in the last year and a half or so. I see alot happening. I don’t know why it’s not filtering down more to the average ME/CFS patient. One problem is that I think the CAA is lousy at tooting their own horn. Maybe you should give them another look.

    CDC - I’m sure many ME/CFS researchers would be very interested in running the CDC program – I just don’t think the CDC would be interested in them. Many of our researchers are kind of working on the fringes – they’re doing their one study every couple of years. They don’t really have the skill set to to run a program but certainly there are some who are qualified – no doubt about it. My impression is, and I could be wrong, is that these organizations usually hire from within and I don’t think we get much support in the CDC. I know we don’t in the NIH.

    We got lucky with Dr. Mikovit’s at the Whittemore Peterson Institute because she’s convinced some major cancer researchers to help us out there but one of those guys has an open position for a graduate student working on ME/CFS and it’s been sitting there unfilled for quite some time. This guy is apparently like a meal ticket to a career – but even the prospect of working with him – isn’t enough to overcome the taint found in academia regarding this disease.

    Federal Research Environment – The federal research environment regarding this disease is absolutely brutal. The grant review panel that receives ME/CFS grants for studies gets the lowest number of submissions in the entire NIH. Researchers aren’t even trying to get grants to study this disease. If they try their success rates are very low. One reason for this is that the review panels are stacked with reviewers who know nothing about ME/CFS. The CAA, the CFSAC, the IACFS/ME and Pat Fero and myself and others have all protested this situation. Both the CAA and the IACFS/ME have sent them lists of researchers they could put on their panels but we’ve seen no change there.

    Research Program -That’s one reason the CAA decided that they needed to take the (very expensive) step of producing small research studies themselves and brought Suzanne Vernon in to shepherd the researchers through the process so that they can produce the most bullet proof research grant possible. (The CAA can’t begin to finance a set of complete studies). She’s been remarkably effective in attracting researchers who already have a substantial background elsewhere to take a look at this disease. Hopefully they’ll hit the NIH with a series of grant proposals that even they will have trouble denying.

    Not Much Support – To make matters worse the Office the ME/CFS program is located in has no money and requires handouts from other Institutes in order to fund its ME/CFS research. It is a very difficult environment. Could the CAA and the Sheridan Group have done better? Probably. But when you have 50 people at Lobby Day trying to canvas 400 Congressman and 100 Senators you’re not going to get very far. (To their credit the CAA brought in an online advocacy program that allowed people to participate online). At the last Lobby day Capitol Hill was flooded with people lobbying for Multiple sclerosis. We bumped into them everywhere. They were being ushered into see their Congressmen while we talked to the staffers. Three times as many people have ME/CFS as MS! I ask myself all the time “Where is everybody?” It’s tough to make an impact you don’t have the numbers.

    I don’t see any easy answers.

    Reply

    Jill McLaughlin August 15, 2009 at 7:38 am

    Cort: You should be happy to hear that the CAA lead the charge to get Reeves gone. Mary Schweitzer didn’t and Meghan didn’t, the WPI didn’t, tne IACFS/ME was nowhere to be seen; only one organization was watching the CDC – it was the CAA. It was the CAA that dug into the CDC’s records. It was the CAA that got Congressman and Senators involved to put pressure on the CDC. If you hear otherwise you’re getting some very bad information (not an uncommon thing!)

    This is not true. Actually again no they did not. Actually it WAS Mary and Meghan and all the other patients who build up enough critical mass — then they jump in. Patients have been saying these things for years.

    It was the CFSAC who pushed for the information and collected the data. This time. Last time it was Hillary mainly.

    Actually the IACFS was involved.

    CAA “follows the charge.” They hang on the coattails. It is their MO. It is what they do best. Has been happening for years. Most obviously if they did do all these things and led anything in a meaningful way they would have support.

    But again, it is worse than failure to lead. It is partially their fault that it happened in the first place. With their resources and contacts they should have prevented it from happening. It happens on their watch. Last time Kim was on the CFSCC. They have been involved in all CDC doings. They boast of holding the federal agencies accountable. CDC did not get bad overnight. I do not see any real change in the program – with which they have been involved and heavily invested all along and for which they received millions of dollars.

    The real issue is worse than not being good enough. They have been an impediment. Like the saying “lead follow or get out of the way”- we cannot get them out of the way. As Hillary observed when she was deeply involved, they have literally aided and abetted. It could not have gotten this bad without their complicity and failure to disclose to the patient community what was really going on – until it’s too late and it’s already been done. And Kim has been the enabler-in chief.

    So what happened to change their mind this late in the game? Now they want to again come off as heros for finally being forced to admit the obvious — that they were involved in. Most people are not this stupid.

    Jill

    .

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    cort August 15, 2009 at 8:20 am

    Since virtually everything you said is wrong and you’re making up facts I’m afraid this is the last post you’re going to have here. This is not Fox News or the National Enquirer; its not a forum for you to make up things. Shame on you!…the CAA did not dig into the CDC’s records? Who did?

    Do you forget that I covered this story from the beginning? I can tell you it came out of the blue! No one knew it was going to happen. It began Nov 2008 when Kim McCleary stood up at a CFSAC meeting and said that Dr. Reeve’s has to go and she laid out a long list of facts – all documented – that illustrated big financial problems were occurring at the CDC’s CFS research group.

    Did I see a report from the CFSAC? No? Did I see one from the IACFS/ME? No. in fact I took the IACFS/ME to task for being so late to the game. Had the CFSAC taken up this issue before Kim McCleary’s report? No. Did it galvanize them to do so? Absolutely! This is sheer irresponsibility on your part – shame on you!! Unfortunately from the NCF to OneClick to Jodi Bassett – this is often what passes for advocacy in this disease. Here’s the timeline.

    Reply

    Jill McLaughlin August 15, 2009 at 8:47 am

    Keith:
    “Hey in 5 years you only have 1000 people less than the CAA has in over 20. Why because your doing a great job that people respect and appreciate. I don’t know where everyone with CFS has gone. But a lot of the CFS material on YOU-TUBE Ive seen often has like tens of thousands of hits.”

    “I think I’m a perfect example of someone who sort of at some point gave up giving energy, time and money to the CAA and NCF because I found them not really functioning well. I live in Mass and we used to have a support group on Cape Cod about 15 years ago which also disbanded around the same time the CAA’s membership started going down.”

    Thanks Keith – think that you summed it up nicely and pretty much reflects the basic situation. Patients would support them if it was worth it. In spite of the self promotion, bravado and time spent patting themselves on the back, people see through it and begin to realize. There is a lot of interest and concern from the number of You-tube hits. But it is really switching towards the ME groups.

    Occasionally the NCF comes up and not to dodge the issue but I really don’t think they are much cause for concern. Thought it was a good idea for an all volunteer patient centered group to balance the mainstream PC CAA, but my experience with them was fairly typical, as most are well aware. There was recently a basic discussion and someone posted information I think from an NCF 990 form. Do not have exact figures but again from amount of membership dues collected they have around 300 dues paying members. Anyone can file paperwork and call themselves whatever they want but is a real stretch to consider it a national org in the real sense.

    But I agree with you that it is a good opportunity for dialogue. Though we may not agree on advocacy issues, thanks to Cort for providing this forum and site information.

    Jill

    .

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    Kelly August 15, 2009 at 10:05 am

    Jill: “Patients would support them if it was worth it. In spite of the self promotion, bravado and time spent patting themselves on the back, people see through it and begin to realize.”

    With all due respect Jill, I think this statement applies a lot more to the NCF than it does to CAA. Their newsletter is a combination of self-promotion and tearing down anyone and everyone and every study that suggests potential (albeit partial) benefits. They are experts ‘patting themselves on the back’.

    80% of every issue is spent attacking others (emphasized by their bizarre need to bold the names of those they’re feuding with – what’s up with that?) , with the remaining 20% boasting about how they’ve found THE CAUSE, the ONE SINGLE CAUSE…and when was that…3 or 4 years ago?

    It’s no surprise they have only 300 subscribers. They are the epitome of bitterness, hopelessness, and anger, and devoid of hope and more specifically news on treatments that are helping people now. I guess they’re waiting for that one magic pill, and until that comes along, anything that helps 10-25% or less is just not worthing telling anyone about.

    So sad…

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    Jerry August 15, 2009 at 11:21 am

    For two patients who are pretty much bed bound, I think we did a pretty good job with creating Lobby Days and Awareness Day. Tom used to lie in the back of the CFSAC meeting room with a stack of testimony and read them to the committee on behalf of those who were unable to attend. You can’t get more grass roots than that! As you mentioned in a previous post, Tom was on Larry King’s show. Tom was the first to publicly call for a name change at the very first national conference. For a more complete list see http://www.rescindinc.org/history.htm But you should know all of this from your interview, Cort. For what we have to work with, we’re pretty proud of what we’ve accomplished. Now if we were healthy and simply split KKM’s salary…

    RESCIND never a friend of the CAA? Read my post again, Cort. Tom and I were founding members! Tom volunteered his father, a lobbyist for Getty Oil, to work for FREE lobbying for the CAA. The CAA asked us to put our very first Awareness Day poster in the Chronicle. Again, you already know this, you learned about this stuff in the interview. Blame it on brain fatigue or are you trying to distort facts as you accuse others of the same? But then, it’s your show, you can disallow posts and take your ball and go home. No it’s not Fox news, but it IS a dictatorship when you abuse your authority over the dialogue.

    As for the number of people attending Lobby Day, you obviously don’t understand the disease. Most M.E. patients are too sick to travel. Some are bedridden and can barely make it to the store for food or prescriptions. Never a friend of the CAA? I sent my wife and mother to one of the first Lobby Days on my behalf. They also regularly visited congressional offices locally with CAA material in hand. We all can’t just jet set around the country like yourself.

    May 12 Awareness Day is international and will be around as long as the disease. Do you think anything you or the CAA have accomplished will be that big or be around that long?

    Reply

    cort August 15, 2009 at 11:41 am

    Of course you guys did a great job with limited resources you had back then. I was very happy to have the opportunity to interview Tom and as I said then I believe we really lost a very vital voice when he became too ill to continue on a regular basis. My apologies regarding the ‘never’ – I did forget about the early years – I’ll amend that to the last 15 years :) . Yes there are many people to ill to make the trip but there are also many people who could who don’t. If the statistics are correct and there’s a lot of people out there with this illness – surely enough to fill a medium-sized room in DC. I would note that only one post has been deleted. It would have easier to delete quite a few more :)

    Reply

    Jill McLaughlin August 15, 2009 at 3:37 pm

    Kelly 08.15.09 at 10:05 am wrote:
    “With all due respect Jill, I think this statement applies a lot more to the NCF than it does to CAA. Their newsletter is a combination of self-promotion and tearing down anyone and everyone and every study that suggests potential (albeit partial) benefits. They are experts ‘patting themselves on the back’.”

    Hi Kelly — OK I think you’re right on this one. Mostly yellow journalism. It really doesn’t work. Can only play the “this is it!” approach just so much and pple tune out, like the boy who cried wolf. This is it, this is the discovery that will prove it all and cure “CFIDS.”

    When that (naturally) doesn’t pan out, they move on to the next announcement of the next “breakthrough.” And the answer will be in the next edition of the Forum!!!! I think it is irresponsible but I suppose plays on people’s fear and desperation. And guess it sells to some degree. Some people want to believe it and on some level can find it difficult or depressing as things fall through.

    But above all, they think they know the “truth” and have all the answers and everyone else is stupid, evil — and of course must be vilified.

    Zealots can be dangerous, no matter how well intentioned.

    Jill

    .

    .

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    Sue Bailey August 15, 2009 at 4:20 pm

    Dear Cort,

    First let me say that I am grateful to you for the excellent reporting you have done on research, new hypotheses and the recovery of desperately ill people–all things that give us hope. I am also grateful to you for maintaining this long-needed blog, and doing so without shying away from impassioned discussion.

    With regard to the CFIDS Association of America, I hope that you are beginning to understand the deep sense of betrayal that many of us–early CAA supporters–share. Jill McLaughlin and Mary Schweitzer and Meghan Shannon and others have refuted your arguments better than I can. I hope you will read them more than once.

    I have never felt betrayed by Hilary Johnson.

    Sue B.

    Reply

    cort August 15, 2009 at 5:50 pm

    The Arguments – I certainly recognize that anger present although honestly I’m still puzzled why. The reason is that because for me the arguments do not match the anger. People are this upset because….

    ….the CAA didn’t attack the CDC ALL the time (just some of the time?). Because they didn’t jump on the ME bandwagon? Because they printed Peter White’s article? Because they ‘Let’ Reeves be the Whistleblower? Jill is upset not because the CAA didn’t expose the CDC’s problems but because they didn’t prevent them in the first place – as if a small support (yes they are small) would able to reach into the CDC’s research division and tell them what to study!

    Jill is upset because the CAA is ‘boasting’ of their accomplishment (?) Keith believes the CAA is too close to the CDC is. (He’s missed alot of activity over the past year.) Mary implies the CAA investigated the CDC out of pique??? She blames the CAA for finding the whistleblower that blew the lid off the CDC mess in the 1990′s. Mary and Jill are upset because a study wasn’t done in the late 1990′s.

    These are mostly relatively small problems. These are not strong arguments to me.

    The Research Question – The only things that have moved me so far is Keith’s statement that he just didn’t get it from the CAA anymore and the fact that research funding is declining. That’s certainly true – not that it’s an easy situation. As I noted in an earlier comment – the research funding problem is many layered and difficult. You need to get researchers to apply first of all (they haven’t been); then you need to get a good review team on board, then you need to get the study funded. Right now the CAA is working harder than anyone, with the possible exception of the WPI, at getting new researchers in the field – a key problem for us. A quick look at the their research projects will show they’ve been successful.

    Accomplishments Make No Difference: Yet the fact that the CAA is one of the only organizations actually trying to do something about this makes no difference to Jill or Mary or you or Jerry. It makes no difference that the CAA uncovered financial problems in the CDC, the creation of the Medscape Physician program makes no difference, the fact they got the government to pay for a Media Campaign…. nobody can hear any of that apparently….they’re just too angry.

    What are they angry about? I’m sure there are many reasons; enough hasn’t been done, there are still no viable treatments, it’s still really really rough out there for ME/CFS patients. I’m sure there are personal reasons as well – people who’ve felt snubbed. Of course the CAA has made its mistakes.

    Given that we’re talking past one another it’s probably time to move on :)

    Reply

    Diana Saba August 15, 2009 at 5:11 pm

    Cort,

    NCF has never had a membership, since it’s inception in 1997, of just 300! Or anywhere near that low number! NCF membership has stayed fairly stable although Jill wouldn’t know the latest since NCF just filed after an extension. The extension was because of a new law that the Commonwealth of Massachusetts just enacted for filing and had nothing to do with any other thing Jill might think of…and it was actually in NCF’s favor! But NCF has been audited many times by the IRS who can’t seem to understand, each time, that NCF is not dodging their requisite for naming our highest paid employees but merely being truthful that NCF honestly doesn’t have any!

    If NCF just had 300 members, NCF obviously would never be able to have funded research at Cairo University in Egypt based upon markers that NCF found as well as work at the Weizmann Institute of Science in Israel. The articles on that funding are on the NCF website from the spring edition of the newsletter although only 4 articles from about 30 go online from NCF newsletter.

    You , Jill or anyone else may also want to go online and read an article from the Winter 2004-5 edition of The National Forum with the title of “‘I Quit’ Jill McLaughlin Steps Down” that relates the real reason of Jill’s adventures with the NCF and others may be reminded that, at the time, she was putting out lots of false accusations about the national charity and the only reason the board voted to put this online was because of what Jill, herself, kept posting! The author of the article, Robert Huntington, has been on the staff of the newsletter for many years. In fact, on one list several years ago, Jill accused him of not existing and another patient explained that he led a support group in a bordering New England town when she first became sick!

    Many are a bit sick and tired of Jill continuing to spread lies about NCF and her ability to hurt so many patients and think nothing of it. I haven’t had contact with Jill in several years and dropped her like a hot potato due to learning of her verbal abuses toward so many sick online patients as well as myself. I tried very hard to work with her but I don’t condone abuse to sick patients and there are plenty within the ME CFIDS CFS FM online community who know of Jill’s wrath.

    Within a week’s time, NCF will be announcing another huge research project which will be posted on Co-Cure.

    We’re you aware NCF waives the membership dues of well over 1/2 their members and, if Jill was a patient herself, she would realize why we do this. So many get sick as children and do not qualify for anything in this country except SSI, which is welfare, and that barely gives you enough to eat on let alone pay $30.00 annual dues. Thankfully, there are many who donate to make up the expense of those patients because, as patients, they fully understand what it really means to have this illness and are know that 100% of their donation will be used without any percentage being taken out to pay for employees or other perks of any kind. So Jill’s low figure, that was totally incorrect, would not only have to be corrected (one IRS form is right on NCF’s website), but Jill would have to double that for the correct numbers to come even close. NCF has never denied one patient a waiver in well over a decade and don’t intend to because CFIDS has torn apart their lives so much.

    I was very disappointed in your harsh attack on Hillary Johnson.

    Sincerely,

    Diana Saba
    Disabled Retired Nurse
    Proud member of NCF since 1997

    Reply

    cort August 15, 2009 at 5:58 pm

    Got it – I understand your pique but I think we opened enough of a can of worms with the CAA. (I have no idea what the NCF’s membership level is). Jill can have one reply and that’s it for the NCF. Further posts on that subject will be not allowed. Maybe we’ll do that another time. Thanks for your comments.

    Reply

    Diana Saba August 15, 2009 at 6:45 pm

    Cort,

    ps…

    NCF’s newest funding that will be announced is to follow up on research that really WAS a breakthrough but has been found not to be a marker for “CFS” but for every autoimmune disease including GWS and prostate cancer. NCF is following up to find out exactly what is making “CFS” positive to this assay just as NCF followed up research to begin with that the CAA funded by W. John Martin that claimed we were all positive to a “stealth virus”. That article, too, is on NCF’s website and explains that Martin was actually testing these patients with the ciguatera assay from the University of Hawaii.

    For years and years, physicians such as Paul Cheney knew very well that patients had severe problems with anesthesia and hypothesized why. This work that Jill doesn’t believe was a “breakthrough actually told WHY and what to avoid so you don’t flatline during a surgical procedure. Yes, saving lives is considered a breakthrough whether Jill thinks so or not.

    And what she refers to as “yellow journalism” always has references with it to point to where the information came from. That’s not considered “yellow” but “ivory”! And if the NCF believes, as she says, that NCF have all the answers, why is NCF about to fund another research project (NCF’s third within a year’s time to bring NCF to over $300,000) to find answers? It’s called follow up to find scientific answers where there have been none thus far.

    MPWC’s were the whistle blowers and Gail Dahlen was one of the people to speak up…Why Dr. Reeves and CAA were untruthful is beyond me…

    Sincerely,

    Diana Saba
    Disabled Retired Nurse
    Proud member of NCF since 1997

    Reply

    Jill McLaughlin August 15, 2009 at 6:56 pm

    Regarding Diana’s post, it is more of the same. Not sure I’d call my experience with the NCF an adventure….

    I’ve never spread lies about the NCF or abused patients.

    Someone posted this info and extrapolated the figure from the membership dues revenue. But even if it is actually double it still is very low.

    There was absolutely no truth to that article that was in the newsletter (that’s nothing new). I may have assumed that the alleged author of the article (Robert Huntington) didn’t exist due to the circumstances. The alleged author (“Robert Huntington”) writes this rambling tome about what happened, yet I have never met him or spoken with him or had any contact with him whatsoever. When I called to object to such libelous accusations, I could not speak to him (of course). Wouldn’t any reputable group reporting on something at least try to contact the person about whom they were writing? And furthermore, how would he know what happened in the first place? I think that about sums it up in terms of credibility. Any rational person could figure this out. So I posted my statement publicly on Co-cure and moved on. But I just do not think this is of any real importance at this point.

    Jill

    .

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    Diana Saba August 16, 2009 at 10:48 am

    Cort,

    Since many have their attention focused on this particular blog I’d like to take a moment to mention Tom Hennessy creator of May 12th Awareness Day of RESCIND and one of the creator’s of our ME Petition has suffered severely via a motor vehicle accident (MVA) in Southern Florida. He has been in a nursing home since January and he needs support and prayers. Get well cards would also be a wonderful gester!
    http://www.rescindinc.org/

    A Call for Action: The Recognition of Myalgic Encephalomyelitis as a Serious and Debilitating Disease
    http://www.petitiononline.com/MEitis/petition.html

    If you haven’t signed the ME Petition please take a moment and you might mention in your comment ~ Get Well Soon Tom!

    Soon there will be information as to how you can contact Tom so watch Co-Cure for updates. He is in need of a social worker and a pain doctor in the southern Florida area and folks are working on getting him the help he needs. If anyone has any information that will help those who are helping Tom at this very sad and painful time in his life please contact the NCF or use the email at RESCIND’s website or contact Jerry of RESCIND.

    Thanks, Cort for allowing me to mention our ME CFIDS friend in his time of need!

    Sincerely,

    Diana Saba
    Disabled Retired Nurse
    Proud Member of NCF since 1997

    Reply

    Keith. August 16, 2009 at 3:15 pm

    This discussion has really gotten my interest here. I feel there is a real difference of opinion based on how long people have had CFS and have followed the CAA and CDC relationship not to mention the NCF but that’s a whole seperate can of worms.
    I guess the whole feeling with the CAA and CDC I have is that old saying fool me once shame on me…..well you know how the rest goes. Except in this case it would be fool me like 20 times. What is needed and it seems everyone agrees is a real grassroots movement with political force behind it. What the catalyst for that will be I donot know but to believe it will come from the CAA is being naive from my 22 years of experience.
    And the NCF is so venomous I had to stop reading there material because it was either a horrible slew of attacks or a revelation of some terrific discovery that just panned out to be not what they cl aimed it would be every couple months or so. What the NCF puts out is like the national enquirer of CFIds periodicals. Very sensationalized and mean spirited.
    Anyway If anyone can suggest an organization that is progressive, honest , hopeful healthy and has a political/ advocacy arm to it please post a link for me. I would love to get involved again in some org. that I can whole heartedly be a part of.
    Keith

    Reply

    meghan Shannon August 16, 2009 at 10:56 pm

    Keith,
    Check out Wisconsin ME/CFS Assn on ME-CFSCommunity.com:
    http://cfsknowledgecenter.ning.com/group/wisconsinmecfsassn?xgi=emYlWn4

    Reply

    cort August 17, 2009 at 7:00 am

    Thanks Meghan for providing your alternative to the CFIDS Association of America – they have 15 members.

    It has not been pretty here for the CFIDS Association but nor has it been some of its vociferous critics . Let me just point out some things.

    Innovative Research Agenda – The CFID’s Association is funding research

  • that will elucidate the gastrointestinal ‘microbiome’ in ME/CFS patients; this should enable them to help determine if Dr. De Meirleir’s assertions are correct
  • that is identifying high rates of lactate in the brains of ME/CFS patients suggesting mitochondrial problems are present
  • Dr. Light’s potentially groundbreaking work uncovering abberrant receptors that are telling patients brains that extensive muscle damage is present (when its not)
  • these determining whether endogenous retroviruses are active in this disease
  • why so many patients have trouble standing
  • The CAA funded the Pacific Fatigue Lab’s work which indicates that many people with this disorder have a fundamental metabolic problem that keeps them from exercising
  • This is a very innovative research agenda. Several of the CAA’s critics who’ve posted here know their research agenda. Many patients, on the other hand, may not. I can tell you that as somebody who follows research in this disease intently that these are very creative projects. If any of them work out they could have important implications for yours and my health. Yet these critics cannot muster any support for this organization.

    CDC Scandal – Several of these critics have been intensely upset at the CDC for years. Yet when the CAA, working on its own behind the scenes, found the evidence of severe fiscal problems in the agency and publicly lambasted their research focus and called for the termination of their research director. This seemed like a major event to me – another real accomplish but their response has been to refer to an incident that happened 10 years ago or to haggle about who should have gotten credit back then.

    Physician Training Program – In the last year the CFIDS Association produced A Physician Training Program on Medscape that was overwhelmed with response. Each doctor participating in the program reported that he/she sees seven ME/CFS patients a week. That means that tens of thousands of ME/CFS patients are now getting knowledgeable medical care that they didn’t get before. That program will be on that website churning away at the ignorance in the medical profession for years to come. This seems like a real accomplishment to me yet none of these critics have even so much as acknowledged it’s existence.

    Media Campaign – Over the last several thusyears or so the CFIDS Association has engaged in a media campaign that has placed ads in popular magazines, has put commercials on TV and created a traveling exhibit that goes to major venues across the country. Because of this campaign millions of people have been exposed to information stating that current fatigue syndrome is a major and serious disorder. Again I think this is a tremendous accomplishment. Yet these critics can say nothing good about this organization.

    Sound and Fury – Yes there has been sound and fury and its easy to get caught up in it. But I ask you if you should place your trust in such unyielding responses? In such harsh critic’s? In people who are so bent on pointing out negative’s, a good number of them dating back decades, that they can’t even a knowledge the substantial positive accomplishments that have taken place?

    Or if you should take a close look at the accomplishments of this organization and decide, based on them, if you think it would benefit you and your health to support them. Given the opportunity to look at what they’ve done (and what they haven’t) and to address some of the issues discussed it’s very clear to me that this group should be strongly supported.

    Reply

    meghan Shannon August 17, 2009 at 8:31 am

    Cort and Keith,
    I am sorry I pasted the wrong URL for “The Wisconsin ME/CFS Assn” .
    here is the correct one.>(http://www.wicfs-me.org)<

    Wisconsin was started in 1986 and has a lot more then 15 members as you well know.
    They were the first CFS organization in the 1980′s to go around the USA and help other support groups become non-profit. They have done a lot more things you can read about. This Organization is strong and very active very well connected.
    Pat Fero is one of the founding members and has done a lot for the patients and has done a lot on the National front that she does not advertise about. Again I am sorry I posted the wrong Web site…meghan

    From Web page, read below:
    WISCONSIN MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME ASSOCIATION, INC. is a non-profit corporation dedicated to assisting patients within the state of Wisconsin.

    Our purpose is to act as a clearinghouse for CFS information; to assist patients and their families; to encourage communication among agencies, institutions and concerned individuals; and to promote research on the cause, cure and ultimate prevention of chronic fatigue syndrome.

    The organization publishes a quarterly newsletter, the Lifeline, which contains information about support groups, notices about seminars around the state, a listing of books and tapes in the rental library, informational articles about CFS research and treatment, and information about resources available to assist patients as well as lighter fare such as poems, stories and cartoons.
    Support groups, seminars, physician referrals and the Lifeline are services that are available to members upon payment of a $25 yearly membership fee. For those Wisconsin residents who are unable to pay the membership fee due to financial hardship, a waiver of dues is available.

    Enter: Wisconsin ME/CFS Assn (http://www.wicfs-me.org)

    Reply

    cort August 17, 2009 at 10:50 am

    Yes I know Pat and I consider her a friend. I don’t think that she considers Wisconsin ME/CFS Association, as as venerable as it is, a replacement for the CFIDS Association. In fact I know she doesn’t and you know they are not either.

    My understanding is that WICFS have about 300 members. They put out a quarterly newsletter. They’re working on the Panda project. They bought the sample bank for the Whittemore Peterson Institute. They’re an excellent organization – one of the few state organizations left. I did an interview with Pat – I know about the WICFS. I love what they’re doing but they are not in the same ballpark as the CFID’s Association and its absolutely silly to suggest that they are.

    The WICFS aside lets just take a look at what’s currently on the home page of the CAA.

  • The CFIDs E-link with stories on the Symptom Survey 1,200 patients recently took – Suzanne Vernon reporting.. Several ME/CFS stories, an alert on opportunity simply with your Congressman during the summer break
  • An article on How to Pace Yourself
  • Tips for Conserving Energy
  • An article on the Swine Flu problem
  • Links to two papers published by CFIDS Association researchers
  • A senate appropriations bill pushed by the CAA for ME/CFS
  • an alert to write your congressman to support and access to the federal medical research data i.e. the CDC
  • I happen to think that’s pretty darn good. That represents an organization that is engaged! Could it be better? Sure. Does it resemble the organization that I’ve been hearing about in many of these comments- not to me it doesn’t.

    Reply

    Paula Carnes August 17, 2009 at 4:02 pm

    No one knows what percentage of cfs is actually infecton with borrelia, babesia or bartonella. One thing I do know – when Dr. Jemsek, a world famous infectious disease specialist who began treating AIDS before folks knew what AIDS was, was taken down in Charlotte, NC for treating Lyme disease with longterm antibiotics – no one at the CAA stood up for him. I guess they figured they didn’t have a dog in that fight. Ms. Johnson wrote the forward to Pamela Weintraub’s “Cure Unknown” which describes several Lyme patients who recovered on longterm antibiotics. Yet I do not see Ms. Johnson writing about how Lyme and cfs look exactly alike. Why not?

    Ms. Shannon has post-polio syndrome. What is the CAA doing about that?

    We already know what SOME cases of cfs are, but as soon as that gets diagnosed we pretend these cases are no longer cfs, so we keep turning over other rocks.

    I was the only patient attending the Charlotte, NC support group meetings who recovered at all, and I was on antibiotics for mycoplasma – didn’t know I also had borrelia and babesia at the time. No one in Charlotte seemed interested. The only doctor who even seemed curious was Dr. Jemsek – long before he started diagnosing Lyme in that part of the country.

    I guess we all have our pet issues. I just tend to think my issue is an issue for at least 60% of the diagnosed cfs population. I base that number on a couple of doctors who have found their cfs patients were actually infected with a few chronic pathogens. So I will support any cfs group who also helps those of us with borrelia, babesia, bartonella and mycoplasma infections.

    Paula Carnes

    Reply

    Keith. August 17, 2009 at 6:24 pm

    Cort
    I agree with many of your points. Yes the CAA has funded some good research that is desperately needed. For that I would give them there due . They have dissemented some good information via the internet. Something which honestly is not that terribly difficult to do. My wife is an Ed. Abvocate and within a month created a great website herself after taking one class which is fairly interactive and has many links. So Ican’t say any of there internet accomplishments are much to hang there hat on.
    I’m sure they are good people who care about PWC’S . I have no doubt about that. But they are no longer a grass roots patient propelled org. any more. In the beginning that’s what they were. That’s why I fealt good about supporting them in the beginning. Marc Iverson was someone I really admired and trusted. Every difference he cited having with the CAA and his reason’s for resigning are the exact reasons I along with others I believe don’t support them anymore. Whenever you have power in the hands of the few or the one as it often seems with the CAA you are not going to be leading your population you are suppost to be representing. Kim Mcleary seems well intentioned but closed of and seems to want too much control over what should be a democratic organization. I mean Iverson founded the CAA yet she ignores his great suggestions. If she won’t listen to him then who do you think she will take suggestions from. NOt me, not you, Not the patient population. How can somone support a organization that does not listen to it’s very founder or patient population they are representing.
    I know people who haven’t been following this as long feel like I as well as others are just stuck in the past and not looking at the present CAA. I can understand that. But let me point out KIm Mcleary has been at the helm for a long time of the CAA and I feelshe just doesn’t listen and has a poor tact on the politics of the CFIDs .
    I remember my history professors in school allways teaching that we study history to recognize and not make the same mistakes as those who walked before us. THrowing your faith and support into the CAA which continues to be run in a closed off insulated way bypeople that don’t seem to listen to other ways of doing things besides there own could be hurting us more than helping at some point.
    For me it’s not how many members or money an organization has that impresses me it is do they listen, do I feel a part of it all and listened to.
    I will continue to watch the CAA. Maybe they will change my mind.
    Thanks Meghan for the info on the Wisc group. I will check it out. Thanks for the info Cort. I have listened to everything you have written carefully. Please pause and reflect on what others who have different feeling on here such as Jill and myself have. We have things we can learn from each other. I wish you all recovery on this site!

    Reply

    Jill McLaughlin August 17, 2009 at 8:48 pm

    Keith. 08.17.09 at 6:24 pm wrote:
    “Marc Iverson was someone I really admired and trusted. Every difference he cited having with the CAA and his reason’s for resigning are the exact reasons I along with others I believe don’t support them anymore.”
    “How can somone support a organization that does not listen to it’s very founder or patient population they are representing.”

    Hi Keith. Points are well stated. For clarification, people have been referred to in terms of friend or not friend of the CAA. But I as well supported them initially. Just that over time they seemed to be at odds with the general patient community.

    One good example was the name change issue. They played a shell game with the name change for years. Patients abhor the name CFS and the well know problems and misattributions it has caused. The CAA always claimed leadership in the name change movement, which was originally started by Tom Hennessy. There is an ME petition with over 8000 signatures. This was included in the name change workgroup’s recommendations.

    Kim was on the name change workgroup and claimed to support it. Yet simultaneously the CAA published their CFS branding article – which we now realize turned out to be the preview of the CDC’s new strategy and approach (for which, as we learned shortly thereafter, the CAA eventually received a close to million dollar contract.)

    Patients, including the CAA’s founder Marc Iverson, overwhelmingly wanted and fought for a name change for many years. So who is the CAA representing? Of course they are free to represent whomever they so choose. However, it is not possible to represent 2 contradictory positions simultaneously or reconcile the position of those (their purported constituency) who desperately want a name change with that of the those (CDC) who created “CFS” and are committed to the retaining and marketing of CFS.

    So, as Mary said earlier, when the new committee met, Kim refused to push for the recommendations to be heard. She had apparently abandoned the workgroup and the CAA and CDC took over with the new PR/marketing campaign. Which is ironic in that the CAA’s one reservation or concern to a name change was always that it would cost too much to educate — yet they spent somewhere around a million dollars to market and educate on “CFS.”

    So these are the recurring themes to which patients take exception.

    Jill

    .

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    Roy August 18, 2009 at 3:30 am

    I started a thread titled “CFIDS Association & advocacy” in the advocacy section of Cort’s forum with the following message at:
    http://forums.aboutmecfs.org/showthread.php?p=2499#post2499

    Please use this thread for discussion of the CFIDS Association in advocacy. IMO, the recent discussion on Cort’s blog got a little polarized, but some good statements were made. Hopefully a constructive and extended discussion can continue here. It will be easier to read and follow, and it won’t get buried in the blog archives.

    It’s good to see some other early advocates still alive and kicking. :-)

    Roy

    Reply

    Jill McLaughlin August 18, 2009 at 5:33 am

    Keith. 08.17.09 at 6:24 pm wrote:
    Cort: I agree with many of your points. Yes the CAA has funded some good research that is desperately needed. For that I would give them there due.”

    (Oops, this got cut off in last post) Yes is would agree here also. Have been more impressed with their research as of late. Obviously an important issue. Previously I think their research program had been hampered by the process (from what I had heard – that they had medical advisors review but the Board made the final decisions). Hopefully Suzanne Vernon will be an asset. She is a good researched and seems very dedicated. A good deal depends on the knowledge and qualifications of those making the decisions, so hopefully this will move forward. The US has been lagging and many people were sending donations overseas. They are good groups but think US research has been suffering and S researchers were not being supported. The WPI is moving forward very rapidly, so I am optimistic on this front.

    Jill

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    Sarah Mc August 18, 2009 at 6:26 am

    It was worthwhile persevering through this interesting discussion.
    I don’t have commentary to add on this topic , but please don’t leave this comment from Kelly unattended:
    Kelly 08.14.09 at 6:22 pm
    “I know eight people in my local group of about 35 who have recovered. One is stuck at a plateau of about 70%, one is at 90%, but the other six consider themselves 100% well and are back at work. Two of these were sick for 16 and 17 years respectively.
    And yes, one woman, who is in her late sixties, even climbs mountains.”

    I don’t believe that most people who recover from ME/CFS are selfish and care nothing for those of us who are still looking for recovery. Some people suggest that people, like these eight that Kelly knows of, just want to get on with their lives and are unwilling to share with us what things they think/know contributed to their recovery .

    We don’t need these people to commit to ongoing dialogue in the forums, but they must have something to say. Some might have personal blogs we could visit, or perhaps they could contribute a guest article on this site.

    Reply

    Keith.. August 18, 2009 at 1:48 pm

    Sarah Mc
    I’ve notices a lot of interesting stuff on You-tube. Patients who have there own ongoing series. They are have been a really great way for me to feel not so alone in this and realize lots of people have this illness and many suffer worse than I. Just type in Chronic Fatigue sydrome on You -tube and check them out. Many of the peoplehave managed to keep there sense of humor from there bed/couch or apartment. It’sbeen a source of support for me anyway since there is no support group in my area.

    Reply

    John Anderson August 18, 2009 at 10:54 pm

    Cort I haven’t been online as long as you have but I am not so insular that I don’t look beyond my country’s borders to see what is going on with this global epidemic and how what happens in one country affects all of us. You wrote: “Most American patients probably are not very interested in the UK’s problems. They are interesting in finding solutions to their problems.” Its this kind of insularity and imperialism that has harmed America’s reputation around the world. It’s a global problem and the CDC is responsible for setting the global agenda to cover up ME and never mention that they insisted on calling it Epidemic Neuromyasthenia despite M.E. being named, defined and classified by WHO – that is until it became an epidemic that they could not ignore, so they ignored the history, Cheney and Peterson’s findings, they ignored Byron Hyde, Shelekov and Parrish telling them it was M.E., they even ignored their own term for it and invented a silly name and non-disease definition so no-one would ever take it seriously. As Jill said Redefinition Accomplished!

    Marc Iverson did the best he could with that horribly demeaning name CFS, as most people at that time were not aware of the historically recognised disease that the CDC was covering up, it’s the Not Invented Here elephant in the room that so many Americans refuse to see, M.E. was recognised by the British first and the CFS name and its non-disease definitions are destroying awareness of the 75 year history of the disease and medical and public recognition. As Marc said efforts to change public attitudes are virtually hopeless and wasted with the present name – people take it very literally and either dismiss it as fictional or say they have had CFS, meaning they had a post viral syndrome, were told it was CFS, and recovered – and that is why no-one is interested in researching it, they hear about people who seem to get run down with this oddly named CFS, they rest and recover, so there is obviously nothing serious to research here. If that is the medical “clout” you think CFS has then why are we here, because its just not working!

    No matter how hard the CDC, CAA, NCF and other groups have tried to brand the name its doing more harm than good and none of you can admit the CDC deliberately created this situation and that reclaiming the truth is the only way forward, because “America is the greatest country on earth” and it does no wrong, you can’t admit that or anything else the US does internationally due to the nationalistic fervour so cultivated by American imperialists. Sadly you’ve been had! Why is there no research on Myalgic Encephalomyelitis in the US – because CFS is the government approved term and doctors dedicated to researching the disease have to abide by the government’s rules, they don’t want to risk losing their medical licence by having their medical practice audited for treating a disease that the government has gone to great lengths to disappear, it would be virtual treason. Tom Hennesy of RESCIND was applauded at a CFS meeting in 1989 calling for the name to be changed and was the first to campaign for M.E. and create M.E. Awareness Day, why did no-one listen to this voice of hope and reason and save us all from 20 years of CFS madness? Unity and action then could have prevented the greater hell CDC has in mind for us now.

    You worry about the cost of reclaiming the “historically accurate” name, forgetting that CFS has cost everyone possibly billions of dollars of biomedical research over the last 20 years and now it is being engineered by the CDC to be a psychosomatic disease, which as Mary said you really should be very frightened about. ME/CFS is not an intelligent or sane response either, it was an interim term meant to bring back awareness of the disease hidden by CFS, and its just as silly to call a serious disease “chronic fatigue syndrome” as it is to call it by combined acronyms which have different definitions, its not realistic to think that renaming a serious disease as ME/CFS with the non-disease CFS definition will change anything. Besides the CDC is ignoring the ME part, and charging ahead with its plans to make CFS a psychosomatic disease and to follow the UK plans for “fatigue clinics” – oh but American patients aren’t interested in the UK’s problems, or are they now that the UK problems are going to be Americas problems soon? At least the Brits have the guts to criticise their government and patient charities who support the Wessely School psychiatrists redefining CFS as a somatic condition and controlling the MRC denying biomedical research.

    As Tom Kindlon has confirmed, Chia’s breakthrough research is being carried on. Because of your insularity you probably haven’t read the work of some of the greatest M.E. researchers outside of the US, such as Elizabeth Dowsett who wrote Redefinitions of a 20th Century Phenomenon, explaining how Poliomyelitis and Atypical Poliomyelitis (M.E.) epidemics travelled together and how they came to differentiate between the two diseases through the identification of enteroviruses in the 1940s – some “polio” patients did not have the polio enteroviruses – they had coxsackie or echo enteroviruses and following up on this work Ramsay and Richardson got M.E. recognised around the world. Read the work of Byron Hyde, who in his Little Red Book describes why so little research was done on M.E. before the 1980s, Wessely’s psychiatric predecessor McEvedy wrote a false PHD proclaiming the famous Royal Free epidemic as nothing more than hysteria, and such was the fear of ridicule in medicine that research funding disappeared. Have you at least read Prof Malcolm Hooper’s Advice to Clinicians and Lawyers, which explains the financial reasons for displacing M.E. with CFS for the benefit of certain industries, or Margaret William’s many articles such as Corporate Collusion with reference to the secret file on M.E. correspondence dating back to 1988 that is locked up in the government archives until 2023?

    The CDC admits to M.E. on its website: “The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.” Anyone who has read the comprehensive history and eyewitness reports knows that that this is the disease that the CDC covered up and pretended was a new “condition” discovered in the 1980s. In 1999 the CDC Director Dr. Koplan stated that he was “willing to support consideration of a name change, but he emphasized that there must be a scientific basis for such a change and the name itself must be scientifically descriptive and valid.” Myalgic Encephalomyelitis was scientifically descriptive and valid, Ramsay et al had the scientific basis, Cheney and Peterson found the biomarkers to diagnose it, and Hyde, Shelekov and Parrish confirmed the clinical observations that Incline Village epidemic patients had M.E., all the proof was there to validate M.E. in the medical world and validate our experience. Public awareness would not have needed campaigns, it would have been major news everywhere and an obvious research priority. We would not be here crying now.

    There is great significance of the paediatric study the CDC refused to fund, as explained in Hillary Johnson’s London speech The Why: “I think the fact that children with M.E. are virtually never discussed by the CDC is powerful evidence of the political nature of their agenda. Endless streams of patient advocates, parents of stricken children, and researchers have pleaded with the agency to conduct surveillance on children, to investigate cluster outbreaks among children in schools and elsewhere, and include the results in their “research.” It never happens, and, as the CDC is currently constituted, I suspect it never will. Because to even admit children get this disease puts it squarely back in the realm of an infectious malady.” You can’t pin “activity phobia” or “illness beliefs” or “secondary gains” on children, the cluster outbreaks confirm “infectious disease” and would have confirmed the scientific reality of an infectious chronic disease striking down children and healthy happy adults – researchers and drug companies would have been lining up to treat it!

    Tom Hennessy was right, the lone voice of reason trying to reclaim the facts which would not have needed awareness campaigns if only US charities had listened then and set the record straight. Undoing that corporate lie is the only way forward, if you weren’t all so defensive about CFS and the obvious damage it has done over the last 20 years. Stop being so angry at the awful truths Hillary has exposed, open your eyes to the wider world and learn more about the history that so many good people here are trying to alert you to. CFS is a lie, a crime against humanity and an outrageous abuse of our most basic human rights, and until everyone stops supporting that lie we will remain a divided and neglected patient community. Patient groups must drop the silly name CFS and come to terms with the obvious reasons why it doesn’t work and the evidence that the CDC is firmly redefining it as a psychiatric somatic disorder. The WPI is finding the different diseases hidden in the CFS wastebasket – M.E., FM and Lyme etc – you can help by supporting the facts about M.E. and put a stop to all those “CFS” patients with other fatiguing conditions promoting their “recovery stories” and damaging our credibility.

    CFS/CFIDS has got to go if we want progress. Some Americans get it, R.E.S.C.I.N.D., National Alliance for Myalgic Encephalomyelitis, M.E. Society of America, and The Committee for Justice and Recognition of Myalgic Encephalomyelitis. Take a look at these groups and how they seem to have had no problem uncovering the historical and political facts. A consortium of groups like this could unite the patient community and create a massive storm of opposition to the CDC, force a Congressional Inquiry and ignite public awareness of all the emerging diseases – M.E., FM, GWS, MCS & Lyme – diseases that are a far greater threat than the hyped up swine flu and the swines who are profiting from it.

    Oh what’s the point, American’s think they know better despite the obvious failure of CFS and CFIDS and the CDC’s plans to redefine us as psychiatric patients, when knowledge about M.E. and the CDC’s malfeasance was uncovered a long time ago, and you could have changed the history of M.E. research for the better. Get well soon Tom…..

    Reply

    Keith B... August 19, 2009 at 9:07 am

    Hey John

    I agree with what your saying to a point. CFS is a horrible name that has been demeaning us for over 20 years. The govermnment did us so much damage by using this phrase and it trivalizes our illness and yes it throws out the idea that CFS has clusters and it can be contagious especially in the beginning. My brother and I got it at the same time after a verified diagnosis of epstein-Barre virus infection. Interestingly I am adopted and not biologically related to my brother so obviously we were both not genetically prone to ME/CFS. A name change would make sense in many ways yet the CAA and CDC don’t seem to care about this anymore.
    I start to disagree with you on some of your complaints more though. I don’t think the term CFS has held back research efforts. I mean the term ME was around long before CFS and very insufficient research had been done using the term ME before the term CFS came into being. IN fact I would have to agree with Cort that that more interest has been given to ME since the term CFS was invented and more research has been done using this name than was done using the name ME in decades previous.
    In fact I feel I get treated better in this country when I tell people and my doctor I have CFS then people get treated by the government run health care of england or Canada. Look at that poor girl who was locked up in a psche ward in Britain by the government and diaed from ME. What good has the term ME really done over there. This illness seems to get ignored no matter what the name because there is not test or verifiable treatment. If drug companies came out with some medicines to treat ME/ CFS like they have for Fibromyalgia and people saw those adds on TV then I think we would see a lot more respect for our illness as I have seen in the US for FM since those adds have been running. Now all of a sudden people seem to know what FM is and feel compassion because it seems real to them when they see those adds on TV.
    I am terrified as you are that the CDC is trying to steer our illness into the Pschological/ Wessely mode. It seems to be there bent on that. That why the CAA and other groups need to go crazy on that. I would also agree with you that we better care about what is going on in other countries with ME/CFS because if it will hurt us here if it gets Psycholgized like it does in Britain. I can’t stand Simon Wessely he is an enemy of people with our illness and his view just block progress and trivializes our illness. The fact that our govenment would listen to him at all scares me to death.
    Good health to you!
    Keith

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    Diana Saba August 19, 2009 at 9:45 am

    John Anderson,

    You may be unaware the NCF has been behind Tom H’s ME Petition since it’s inception and basically RESCIND nor NCF either one has changed their web sites names to M.E. yet but throughout both M.E. is there and supported! :-)

    If you go to the NCF web site http://www.ncf-net.org/
    and click on the uppper tab “Resourses” you’ll see a clickable link to read and sign Tom H’s M.E. Petition. I myself have made the petition available on several occassion’s throughout our community.

    Since the M.E. Petition NCF has shared in their quarterly newsletter within each Spring Edition a M.E. Poster that can be copied and shared in everyones home towns, doctor offices, and any other place they would be welcomed.

    My husband and I sent Tom a card today ~ Get well soon, Tom…

    Take care,

    Diana Saba
    Disabled Retired Nurse
    & still pushing for M.E.

    Reply

    John Anderson August 20, 2009 at 7:53 am

    Hey Keith

    You have made some very good contributions to this discussion and are well aware of the failure of the CAA to listen to what patients want as opposed to what Kim, a healthy person, decided without consultation what is “best for us” and ignoring patients repeated concerns about the horrible name. In a co-cure post today John Herd pointed out it was the massive drop in patient support that saw the CAA turn to the CDC – for the money! They could have listened to what members like you and others told them but it could be that Kim’s salary was the issue and that those on the board have no idea what its like for us on disability and renting. Until CAA and other CFIDS groups can come clean with the damage the CDC did in cutting off the polio-related history of M.E. and its standing with WHO for 40 years they are part of the problem.

    You are not getting treated better in the US – I have heard of terrible things happening there. Casey Fero tragically died because he didn’t have a doctor at all, this year severely affected Ryan Baldwin was illegally abducted from his parents and family and is imprisoned in foster care, and many sufferers don’t have any health care at all. Despite all the sophistry of the CDC’s 5 year plan if you deconstruct the spin it is a blueprint to have UK style CBT/GET clinics, they are past trying to steer it into the Wessely psychological mode, it is their official plan and they are just not saying it outright. You will also find that Wessely’s many conflicts of interest include sitting on various US medical or scientific boards so he has great influence in the US and the CDC used White to review their 5 year plan, or more likely to check that it was consistent with plans to set up clinics as a cover for saying they are treating the “CFS/ME” issue, also defined by a vague fatigue non-disease definition.

    You and patients everywhere have been repeatedly calling for and testifying at CFSAC meetings and creating petitions and writing articles such as Reclaim Myalgic Encephalomyelitis by Judith Wisdom, it has been the most misunderstood and damaging name in terms of research and understanding the disease. Research has been damaged by such a poorly named condition characterized by fatigue that is “successfully treated” by a bit of CBT and GET, which is what they read in medical journals mostly published by biased doctors and psychiatrists, its been damaged by the heterogenous patients selected by the broad criteria and the inevitable inconclusive results, and the manufactured debate and delay over and whether it is neurological or psychiatric, despite the Who ruling. Medical personnel and specialists need to hear medical terminology, classification, diagnosable and testable criteria, evidence of brain scans, immune results, cardiac dysfunction and drug companies need evidence for treatments so that they will push the issue too.

    I am not denying that some progress has been made with the misnomer CFS, but it has been pitiful when you think that it has been 20 years now and that what happened when the CDC covered up what they knew to be an undeniable pandemic of M.E. with their falsely constructed CFS and a non-disease definition has slowly lead to the current CDC plan. And you have to recognize the politics that control what medical journals can publish and that is why the governments demeaning term for us has had so much research done it, and far too much of it has been of the psychological/stress/predisposition. The bottom line is CFS and CFIDS with their vague definitions and lack of historical and scientific basis have failed, and the patient community is tired of the name game and beginning to see how the CDC has used CFS to give you Wessely’s “cure”.

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    Erik Johnson August 20, 2009 at 11:24 am

    Someday, History’s final verdict on the CDC’s creation of CFS may be this:

    “I fear that all we have done is to awaken a sleeping giant, and fill him with a terrible resolve”

    -Erik

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    Kelly August 20, 2009 at 11:39 am

    Hi Sarah,

    There’s a possibility that I could get 2, or maybe 3 people (and/or possibly even four) to tell their stories, but many have tried to do so on other forums, only to be attacked, sometimes viciously, by those who, for one reason or another, just cannot hear that others have recovered and/or are getting better.

    The two that I’m pretty sure might be willing to share their stories are one who was sick for 4-5 years, and the other who was sick for 17 years. It may take some time, but I’ll try. :)

    Kelly

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    Keith... August 20, 2009 at 6:42 pm

    John
    Sounds like we agree on so very much. Both hate the name and afraid what direction is taking with it in the US. I was speaking from my own experience when I said we get treated better by the medical community here. The last three Primary care doctors I’ve been to over the last three years all have had a good general understanding of my symptoms and that my disorder was not of a psychological nature. Ialsolive in a very well educated and liberal state so maybe that has helped my experience.
    It seems like the term ME even though it conveys the seriousness of our suffering much better has not led to better or more research in other countries. Am I wrong here? Also most people I believe who have no income or recieve disability would qualify for medicaid in the states. At least in Mass. where I’m from so I don’t know if I can agree with your assumption that many people in the states with CFS do not have health insurance or health care. There is a safety net here for those who are disabled or at or near poverty levels. Not saying it’s great because not all PCP’s will take it but some will.
    So to I can’t say changing the name would change the way we are treated because from what I’ve read very little research was being done on ME prior to the US CFS label. I feel it would get more sympathy from family and friends if I said I had ME instead of CFS. I can do that now if I wish.
    You mention Wessely a lot and we seem to both agree on the way he underminds the real physical nature of our illness with his pschosocial ME/CFS model. But your kind of making my point in a way as Wessely come from a country with the name M.E. for our illness. The name did not stop him from doing what he is doing to us. So I feel a name in itself is not going to change things very much. Two things that will in my opinion are a renewed and appropriate political movement and scientific progress which ties into political progress.
    Unfortunatlely the ME/CFS community is one a very sick and financially decimated group and two are very splitered because no organization has been uniting us with strong political leadership. I wish there was one group internationally or in the US that we could all get behind and show the world our numbers.
    It seems the diseases that get most of the attention are the ones where people drop dead in large numbers. Most of us just fade away rather than burn out. Our disease makes us quiet but what we need is to unite and make noise.
    Wishes for wellness
    Keith

    Reply

    Carolyn Richards August 31, 2009 at 7:54 am

    I am not a political person & do not believe it has gotten us anywhere. The CDC is going to do what they want to do & no matter what anyone does we cannot change that unless we can prove that they are looking at apples & we have oranges. Everyone has been throwing away money for physician training & public awareness because if we are only describing apples then doctors are treating apples. Doctors don’t read good research, they go to the CDC for information.

    I always think of the time that all of the HHV 6 research was out there & even Gallo’s patent for HHV 6 mentions mono like illness from Cheney’s patients & the co-discoveror’s papers on HHV-6. Then a paper comes out with Reeves name stating they couldn’t find HHV-6 or & in CFS. Tom Kindlon recent co-cure post on Reeves stating Peter White was an autonomic nervous system specalist.

    CDC could have legitimized CFS by JUST changing the name or even leaving it CEBV & all the money wasted on trying to convince everyone that CFS is a real disease. But they still choose to call it an apple & supposedly try to tell everyone it is an orange. If this money had been spent on research.

    Food for thought. No matter how it came out that Reeves had his hand in the cookie jar use a little common sense. My best guess is that the Director came to Reeves & said, make this go away. How many choices do you think he had.

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