Patients Blast the CDC

May 4, 2009

Posted by Cort Johnson

The public review session on Monday in Atlanta was part of the CDC’s ten-year review of the program. Thus far the research program has received several internal reviews and an external review and is now in the process of creating a Five-Year Strategic Plan. The public review session Atlanta was focused on suggestions regarding the CDC’s future direction.

A Rocky Start – Amazingly enough, just months after Kim McCleary blasted the CDC for a lack of organization and planning the CDC exhibited those characteristics in spades. The meeting was announced just two weeks before it was to take place – giving people little time to prepare – or put aside time to attend. Since the late notice made getting to the site difficult and since traveling is too much for most ME/CFS patients anyway telephone call-in capability was essential but there was none. Apparently pressure from the CFIDS Association of America got that instituted (who else would do it?). The goal of the meeting was to comment on the CDC’s upcoming research effort but since the CDC hadn’t released much on that nobody had any idea what it was.

This is the Plan? Apparently in response to criticisms from the CFIDS Association of America and the IACFS/ME the CDC quickly cobbled together an overview of the new plan. The document, though, was more a plan for the plan rather than an actual plan – it was simply a generic document that gave a broad outline of the CDC’s goals.

That didn’t go over well. The IACFS/ME representative Dr. Klimas noted with dismay at how sparse it was and Kim McCleary railed at it. It reminded Dr. Katrina Berne of a similarly slipshod effort she’d had dealing with obviously uninformed and disinterested CDC officials on a provider education program. She stated that the effort thus far was ‘consistent with the CDC’s slipshod approach to CFS over the years” calling it nothing more than ‘”lip service’. The review process, thus far, had all the aspects of a program not wanting to reveal its direction for fear of being criticized.

Once the proceedings began, though, the CDC ran them in a very professional and objective manner. A high-level official (Director of Viral Program) started the meeting off. (The head of the CDC was supposed to begin it but was, forgiveably, preoccupied with the swine flu outbreak). Special kudo’s, in particular, go to the moderator (hired by the CDC) who managed a good degree of compassion and level-headedness despite the onslaught that followed. Everyone who wanted to was allowed to speak, including people who didn’t sign up (or who didn’t get on the list even though they did sign up such as myself) and then speak again if they wished to.

Boy did they speak.

Patients and Advocates Show Up – And Blast the CDC

One wonders if any government funded medical research program in existence could elicit such a barrage of negative comments (or if any other patient population is as articulate about their disease). Thankfully (and surprisingly) the CDC officials stayed throughout the session and got a full dose of the communities anger and dismay at the lack progress. It couldn’t have been anything but extremely uncomfortable for Dr. Reeves, who reportedly sat with his head down for most of the meeting.

Heart felt pleas for more and better research alternated with rather complex analyses of research topics and absolute blasts decrying the lack of progress and calls for Dr. Reeves to be replaced. It was a good, diverse mix; the ME/CFS community showed up and acquitted themselves very well.

“The things we’ve been asking for all these years are still out there” - Twenty Years Plus Patient

Besides the bitter lack of meaningful progress some themes were hit again and again; a definition (Empirical) that does not represent the average ME/CFS patient, the dire need to produce verifiable subsets – a topic the CDC seems to have abandoned, a desire for more in-depth pathogen studies -which the CDC shows no interest in , the lack of collaboration and interest in other research efforts and a general feeling that the program needs to be redone and that new leadership is needed.

“With 4 million people effected CFS is a health emergency” Kim McCleary

Few people in the audience participated but participation via telephone was high and many advocates joined in; Kim McCleary, Mary Schweitzer, Marly Silverman, Jeannie Spotilo, Tom Kindlon, Katrina Berne, Wilhelmina Jenkins, Hilary Johnson and Craig Maupin all commented on the plan.

This is the first time I’ve heard Wilhelmina Jenkins speak. One of the Faces of CFS on the CAA’s traveling exhibit she figured prominently in earlier advocacy efforts and one could hear why – she is a very powerful speaker . (Her son, interestingly, is married to Kim McCleary of the CAA). I tried to get a transcript of her talk but there wasn’t one and I wasn’t surprised at all; it was spontaneous and from the heart and it was very moving.

“I’ve missed my thirties, forties and fifties with this disease. I don’t want to miss my sixties as well. My daughter has had this disease for 20 years. If my grandson comes down with it will absolutely break my heart.”

Robert Miller tore up the room at the CFSAC meeting a year ago with his story and he did it again today stating

“I am chained to my house. I am dependent on my wife and two eight year olds. I do not have a normal relationship with my son or my wife… I’ve done my part: I’ve given blood, muscle tissue, spinal fluid and lymph nodes….It’s time for you to do yours.”

He was the first person to directly call for Dr. Reeves removal as he slowly and emphatically stated that he believed that

“To refresh the program you need to start at the top. Dr. Reeves has to go”.

Several doctor’s with ME/CFS gave particularly evocative testimony’s. Referring to the empirical definition Dr. Lily Cho M.D. called the CDC’s research ‘garbage in and garbage’.  Craig Maupin of The CFIDS Report followed this up with the observation that the average participant in CDC studies spent 31 hours a week at work and 17 hours a week on outside activities.

‘The criteria has been watered down to such an extent that it no longer resembles the disease I have’.  Dr. Lily Cho

Katrina Berne, MD, the author of ‘Running on Empty’ and board member of the CAA, has been disabled since 2001. Dr. Berne has clearly been bitterly disappointed by the CDC’s lack of progress calling their efforts ‘slipshod’ and stating that she had ‘little to be optimistic about’ future efforts. She had my favorite line from the meeting stating

“I’ve been ill for approximately the same amount of time that the CDC has been studying it….It would be accurate to say neither of us has made significant progress.” Dr. Katrina Berne

After going off Ampligen Mary Schweitzer’s health (as predicted) has deteriorated and she’s now in a wheelchair but she was a lucid as ever as (if a bit garbled by the connection) as she calmly picked through many areas of need. She called for the CDC to adopt the Canadian Consensus Definition as the clinical definition of ME/CFS and noted that  Dr. Jason’s recent study indicates the Empirical Definition mis-diagnoses patients with major depression as having CFS. She called for the General Accounting Office (GAO) investigation into the creation of the Empirical Definition and its suitability for this disease.

“Shouldn’t the definition at least fit the patients it was commissioned to describe?” Mary Schweitzer

My testimony also largely focused on the problems of the Empirical Definition (a common theme throughout the meeting) and I registered dismay at Dr. Reeves decision to characterize this disorder as ‘unwellness’ – putting it just a step below ‘wellness’ and a long way from ‘illness’.  That word demonstrates better than anything I know just how out of touch the CDC’s program is with the patients it should be serving.

Tom Kindlon noted his lack of notes and then turned in two spontaneous but quite lucid analyses of the problems with the different definitions and CBT’s failings. Hilary Johnson, always a very harsh critic of the CDC, almost overturned the moderator’s seemingly imperturbable composure, as  she slowly stated that the

“CDC should publicly apologize to every patient on the planet”.

Jennifer Spotila the Chairman of the Board of the CFIDS Association of America and a former lawyer demonstrated her legal’s skills have not been lost as she dissected the failings of the program with an almost lazer-like focus. (One would hate to be opposing her in the courtroom.) She noted that the big words the NIH and CDC officials evoked at the Nov, 2006 meeting have faded into nothingness and called for an outside accounting group to audit the program’s effort. She stated that without systemic change the five year plan won’t amount to anything.

“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 afternoon reached an emotional peak when Dr. Vollinsky hammered on the CDC’s failings and then returned a second time to do so in an even more emphatic manner. Speaking apparently without notes but in still quite lucidly he noted

“The comments at this meeting indicate there is an overwhelming need for new leadership” and ”I will absolutely be disgusted if there’s no new leadership”.

Aside from Dr. Klimas and Staci Stevens, the ME/CFS research community simply didn’t show. After a rather rambling initial statement on behalf of the IACFS/ME Dr. Klimas returned to emphasize the importance of the program and the need for it to broaden its horizons

The CDC program spends half the money spent on CFS in the US every year; it’s not a small deal (to researchers) where the CDC goes with this money. The international feeling is that the infectious aspect is very important in CFS but not at the CDC. As an immunologist you can’t see the degree of immune activation we see in this disease without an infection…. You’re can’t not look at infections in this disease “

She then implored the CDC to turn the gene expression technologies they had developed to look at the pathogen component in ME/CFS.

It was a compelling presentation by the ME/CFS community and one wonders what effect  it had on the CDC Chiefs present.

Kim McCleary on the CDC’s Five Year Plan

 Dr. Reeves: Too Little Too Late?

Systemic Change Needed: CAA Hits CDC Again

Patient’s Blast the CDC

 IACFS/ME and the CDC: Mouse or Lion?

30 comments

{ 30 comments… read them below or add one }

John May 5, 2009 at 5:02 am

“With 4 million cases of CFS in the United States alone, what does it take to have CFS declared a public health emergency?” -Kim McCleary

This bothers me. A lot. The patient community has identified and resolutely challenged one of, if not the single most pressing issue in CFS, the definition used. Whether it be Oxford, Fukuda, Canadian or Empirical, it matters one hell of a lot what patients you select to study.

The Oxford definition has a prevalence rate of 2.6%, when patients with psychiatric symptoms are removed this drops to only 0.5%, the Fukuda has been variously reported to have a prevalence of 0.24% to 0.42%(remarkably similar to the 0.5% of CFS patients w/out psychiatric symptoms re: the Oxford definition), with the ‘Empirical’ definition clocking in at a whopping 2.54%, which is where the ’4 million’ number comes into play.

For the CFIDS Assoc. to not emphasize and challenge this extremely important issue but instead to simply quote whichever is the more inflated prevalence rate by merely picking the biggest number and running with it in what appears to be an attempt to inflate the numbers while at the same time giving lip service to the inadequacies of the Empirical definition and the harm it is causing to patients by way of shoddy research efforts is without dignity or honesty, and runs counter to the hard fought efforts and best interests of the patients themselves.

For more info re: the Empirical Definition-
http://www.iacfsme.org/IssueswithCDCEmpiricalCaseDefinitionandPrev/tabid/105/Default.aspx

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Cort May 5, 2009 at 7:02 am

Hi John,

I know what you mean – the CAA is trying to have it both ways; they’re trying to get the CDC’s attention and get more funding by using this large number while disagreeing with it personally but not taking a stand on it as an organization. I agree that the emphasizing the problems with the empirical definition is the most important issue. They did take them to task for the empirical definition in their remarks but there has been no concerted effort by any organization to block it.

That statement by Lenny Jason is interesting; he tried to get the IACFS/ME to take a stand on the issue and they wouldn’t! All they would allow him to do is put his comments on the their website. Everybody (except for Lenny Jason) dropped the ball on this issue. Ken Friedberg, the President of the IACFS/ME now, has agreed to a little interview at some point and what stand that organization will take on this issue will be a key topic.

Notice as well the IACFS/ME’s absolutely paltry presence (and the almost total lack) of other researchers at the meeting. Hopefully they’ll show up more as the process continues to unwind. (That will be the subject of blog#3 on the meeting).

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cort June 2, 2009 at 5:11 am

Things have changed regarding the Empirical Definition since then: the CAA, the CFSAC committee and, most importantly, the IACFS/ME have come out against it. Then at the CFSAC meeting Reeves announced an international workshop to come up with – it appears – a new definition. Thus ends, hopefully, six years of using a definition that no one else was – six years of work conceivably down the drain. (Of course they’re still using it now- and are enrolling people in long term studies using it. It will live one for quite a while.) One wonders if the CDC would be so interested in child abuse if that definition had never been created.

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Anita Patton May 5, 2009 at 7:26 am

Hi Cort ~ Thank you for this synopsis of the meeting! I appreciate the information as if we were right there listening to get an idea of what went on. I am very thankful for all the comments and participation ~ good job!! I salute each and every one of you and let’s hope they make some change for the better, they MUST!!! Anita

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cort May 5, 2009 at 12:10 pm

Thanks Anita. If anyone wants to check more resources on the meeting you can find links to all the presentations I could find as well as blogs on the matter, overviews, etc. at this page.

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Mary Schweitzer May 5, 2009 at 8:26 am

Thank you Cort. I found the wait to testify by phone too exhausting to take notes, so I am very grateful for yours.I was intrigued during the meeting by the consistency of the testimony. These themes predominated:

1. You’re turning CDC upside down for a disease that has been found in 44 (at the time) Americans – there are 1 million of us and many have been severely ill for 20 years or more. When are you going to put the same effort into what causes our disease?

2. Simple but heartrending descriptions of the suffering.

3. There are no doctors out there. Nobody knows about this. That is CDC’s fault.

4. Since adopting the absurd name “chronic fatigue syndrome,” CDC has done nothing to help patients and much to harm them.

5. We do not trust the current CDC team, which has paid far more attention to British psychiatrists like Peter White than American researchers and clinicians.

6. We are not sure we trust CDC, which has allowed shoddy and inequitable treatment of patients suffering from our disease.

7. The Reeves so-called “international empiric” definition and accompanying questionnaires must be disavowed and perhaps there needs to be an investigation in how they were created – but an objective investigation.

8. A new team, perhaps even outside CDC, must take over the CDC’s job regarding this disease – identification, reporting, control and prevention.

9. The most important task now is to use biomarkers to identify homogeneous subgroups so treatment protocols can begin to be developed.

And as Hilary Johnson said so eloquently, CDC owes us an apology.

Mary Schweitzer

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Robert Miller May 5, 2009 at 8:43 am

Cort, Great job on reporting the CDC meeting.Even though I was on the call I missed some of the testimony. The upcoming CFSAC meeting on May 27th and 28th in Washington D.C. will be another venue for all CFS/ME patients to allow their voices to be heard . Here is some contact information: May 27-28, 2009 Meeting Chronic Fatigue Syndrome Advisory Committee (CFSAC) (202) 690-7650
cfsac@hhs.gov (Email) Attention to Alga, I do not believe a call-in has been set-up yet. Thank you again for informing us and keeping us patients updated. Bob

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cort May 5, 2009 at 11:58 am

Thanks John, and thanks for bringing up the CFSAC meeting. We should all be aware that this is just the start of the process; the CDC will present the first real draft of the Five Year Plan at the CFSAC meeting in just three weeks. Then there will presumably be another public review period and hopefully another public session (altho nobody at the CDC – except maybe that brave CDC staffer who went public – would look forward to that).

I’m going to be at the CFSAC meeting, Bob will be there, Kim McCleary and Suzanne Vernon always attend, Mary usually does as does Marly Silverman. Her cohort Rebecca Artmann is the patient representative on the Committee. I hope others can as well. There’s an opportunity to give comment or just be there to show support and learn. Turning out for these meetings is important to show the government that they have to deal with us. The meetings have been better attended recently – let’s fill up the room this time!

Mary brought up an interesting point; it’s not just the Reeve’s team (actually it’s not the team at all – it’s the leadership that’s the problem. ), the CDC itself is the problem as well; they don’t give any signs – with their puny funding – that they give a damn about this disease. While Dr. Reeves is being taken to task for his decisions we also have to send a message that the CDC itself is, if anything, more culpable. How can you justify spending $4,000,000 on a disease that credible research shows costs 10-$20 billion dollars a year in economic costs and effects a million people? The only way to do that it to tell yourself that the disease doesn’t matter, that really is a minor psychological disorder, etc. If they don’t treat it seriously how can they expect their researchers to treat it seriously.

Put it like this – say Dr. Reeves does get the boot – which seems very unlikely at this point – who would want to step into his shoes? Its hard to get a serious researcher to step into a chronically underfunded, poorly supported program. The CDC, like the NIH, for all their compassionate and heartfelt statements continue to thumb their noses at us in reality. It’s BS! Diseases of ME/CFS’s size typically get hundreds of millions of dollars a year in funding – not 3 or 4 million.

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Brown-eyed Girl May 5, 2009 at 9:46 am

Thanks, Cort, for your excellent summary of the CDC’s review session. Always bothered by the 1 million to 4 million number myself, I found John’s and your comments particularly interesting. Apparently, the CAA believes there are 4 million sufferers of ME/CFS. I noticed that Suzanne D Vernon is one of the co-authors of the Empirical Definition. I’m fairly certain that she is the Research Director for the CAA as well. Therefore, which definition is used by the CAA when choosing a population for their research?
B.E.G.

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cort May 5, 2009 at 12:08 pm

That’s a good question. Dr. Vernon is one of the co-authors of the definition. I don’t if she was obligated to be given that she was the lab chief or if she thinks the definition is a good one or what but that question was asked at the IACFS/ME Meeting in Reno and the CAA is using the standard 1994 definition in all the studies they’re funding.

I think you’ll be surprised by Dr. Vernon. I talked with her a bit at Reno; she was chomping at the bit after she left the CDC to get out and network with all researchers and I think she really did. About six or seven awards were given out at the IACFS/ME and she got one of them. What surprised me was that the room to their feet and gave her a standing ovation – I think she really did get out there and network. She was kept pretty cloistered at the CDC. I e-mailed once while she was working there; she gave me a very nice reply but said she couldn’t talk about anything – only Reeves does. She was the only one besides Annette Whittemore to get a standing ovation.

You wouldn’t think she’d be interested in viruses either but she said she initially she wanted to devote the entire $1,000,000 of the Research Initiative to viral research. She’s a very dynamic, really rather creative person. She’s definitely trying to shake up the field. Some of that will come out in the IACFS/ME overview (which needs to get out).

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Sherry May 5, 2009 at 6:16 pm

Thank you, Cort.

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John Anderson May 5, 2009 at 9:16 pm

The most important comment I have read is Point 4 of Mary Schweitzer’s excellent comments:
4. Since adopting the absurd name “chronic fatigue syndrome,” CDC has done nothing to help patients and much to harm them.

This is the core of the problem – the CDC investigating an epidemic of Myalgic Encephalomyelitis renamed and redefined it as the meaningless, ill-defined and very absurdly named “chronic fatigue syndrome” with a vague definition because they knew no-one would take that seriously as a severely disabling epidemic neurological disease. While we are all aware of the CDC’s failings, what of the patient organizations who have not fought for the reinstatement of the correct terminology and let the CDC get away with CFS for too long.

Its difficult to support the CAA for doing the CDC’s PR all these years, helping the CDC brand this false name into the public’s mind and then everyone wonders why no-one takes it seriously. The average US patient thinks CFS is a new condition discovered in the 1980s – that’s how effective has the CDC been at hiding the truth and unfortunately how ineffective the patient organizations have been in not challenging the CDC over the epidemic history, naming and classification of M.E.

There is evidence of inflammation and a history of enteroviral contagion – Atypical Poliomyelitis is how the US Surgeon General first described the disease. The correct medical terminology of Myalgic Encephalomyelitis is justified and together with the Canadian definition and the history of the epidemics you have grounds for a real swipe at the CDC and a far better chance of educating people about this epidemic disease and finally getting some justice for sufferers.

The CDC and the UK psychiatrists have been literally getting away with murder with their continually evolving misinformation about chronic fatigue and fatigue syndromes and have probably been having a good laugh all these years knowing that patient organizations have been unwittingly doing their damaging PR for them. Have a look at the NAME-US or TCJRME sites to learn about the historical facts and then you will know what has been missing from patient advocacy for the past 25 years.

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Gabba May 5, 2009 at 10:54 pm

I have mixed feelings about Suzanne Vernon. Yes, she has done some quite good work, and in one sense at least is clearly heading in the right direction.

However, she was also an author on this recent and probably quite influential paper*. Check out the list of ‘collaborators’ on that paper, it reads like a whose who of the psychiatric somatisation school (of which the lead author, Ian Hickie, could fairly be said to be a solid member), and it also conspicuously lacks input from any of their serious critics in the research or clinical areas.

Don’t really know what to make of all this. Don’t want to find Vernon guilty by association, but it troubles me. I hope I am wrong about Vernon.

*Are chronic fatigue and chronic fatigue syndrome valid clinical entities across countries and health-care settings? Hickie I, et al. PMID: 19085525

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Carolyn Richards May 6, 2009 at 2:12 am

I hope your efforts do not fall on deaf ears. The government seems to play to their own drummer. They want to study fatigue & pain & CFIDS & Fibromyalgia make perfect mouse models.

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P.Dacre May 6, 2009 at 4:16 am

“One wonders if any government funded medical research program in existence could elicit such a barrage of negative comments (or if any other patient population is as articulate about their disease).”
I can state with some confidence that I know of at least one other government funded medical research program. It happens to be in the UK and has recently been taken to the High Court by some in the ME community. The National Institute for Health and Clinical Excellence or NICE for short. Which incidentally has not been very nice to the ME community.
I love this article. Please keep up the work and the pressure. The ME “problem” is a global phenomenon.

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cort June 2, 2009 at 5:03 am

Good point! The only other program is probably an ME/CFS one in another country. That’s rich. I imagine things are even hotter there. If they

    had

research programs in other countries it would be the same – but they don’t even study ME/CFS in other countries. They’re not even on the playing field in most of the world – nothing to comment about!

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Henrik Giertler May 7, 2009 at 6:08 am

Thanks Cort!
This is very interesting reading.
The opinions went much one-way by the looks of it. It sends my blood boiling – the indifference of CDC folks.
I also loved Mary Schweitzer’s first point:
1. You’re turning CDC upside down for a disease that has been found in 44 (at the time) Americans – there are 1 million of us and many have been severely ill for 20 years or more. When are you going to put the same effort into what causes our disease?

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Elizabeth Ann May 7, 2009 at 11:26 am

As a disabled, housebound CFS patient, I was not able to attend the recent meeting at the CDC. I’m reading about it now trying to catch up, trying to feel involved even though CFS prevents me from being directly involved as I would prefer. I liked what I read on this site. It was professional and to the point. I then read the CFIDS Assoc. email summary of the meeting and I’m discouraged by the unprofessional tone the CFIDS Assoc. Look, we’re all amazed, indignant, deeply frustrated, even outright angry at the indifference demonstrated by the CDC. But let’s not assume its us vs. them. The fact is that we NEED each other. We must maintain some degree of professionalism. And I’m so impressed by many of the speakers, particuarly the patients who made such articulate statements. It’s all the more reason why sentences like this one from the CFIDS Assoc. are so counter-productive and unnecessary,
“…the patient community was so consistent in its call for change. I’m sure many observers assume it was the result of a tightly controlled campaign of message reinforcement. I suppose that is preferable to believing that all these people reached the same conclusion independently, which is what really happened on that day.”
Well, I’m not sure that people assume the CFS patients collaborated in their testimony. Why adopt such a snarky tone? It makes us look bad. As CFS patients, we’re sick, we’re not cynical.
In an earlier sentence, it was insinuated that Dr. Reeves was asleep and the question, “Was he even listening?” I don’t know the answer but why go looking for a fight? You make your case and hope the message was received.
My point is this: The CDC must do more to address the unfathomable effects of CFS, and they will only do more if patient advocates speak articulately and professionally about the disease. It’s us against CFS; let’s not create any new enemies.

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cort May 7, 2009 at 2:17 pm

That’s an interesting point. The CAA has certainly been very careful in their comments in the past – careful enough for some in the patient community to think they’re out of touch – but they’ve really drawn a line in the sand here. It is amazing to see them go so far. I can only guess that they feel they don’t have any other options. It could even be that they think the program in its present shape, is hardly salvageable – that it would be better gone than continue in its present form.

That middle comment about ‘message reinforcement’ was a little odd which made me suspect it was in reference to something someone at the CDC said.

We do forget, though, that CFS is the biggest problem. If anything about this disease had been obvious or easy we would have been alot further along – but very little is in this disease. For my part the people I’m most furious at are the heads of the agencies that continue to fund us like we had tonsilitis or something. That’s just unforgiveable to me. The researchers may be right or wrong but they do have reasons for what they believe in.

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John May 7, 2009 at 2:55 pm

To Elizabeth Ann, the CDC is actively seeking to portray CFS to be a psychiatric illness and that you could get better if you would just change your beliefs about your illness being physical. If that sounds ok to you, then by all means you don’t have to say anything that might rock the boat or come across as being disrespectful. I however have a serious problem with it and congratulate the CFIDS Assoc. for their comments.

The problem is it is not just indifference, it is that the CDC are actively working to institute a psychosocial model of causation for this illness. You make a good point about it being us against CFS, but the CDC are not with us in the slightest, and even could be seen to be against us in the search for physiological pathogenesis, therefore they are completely irrelevant and have been for at least the past 4-5 years, ever since the ‘Empirical’ definition was introduced. The patient community would be much much better off if new leadership who had even an inkling of knowledge of CFS was installed at the CDC, and in fact there are some who would rather the CDC program be shut down than continue on in it’s current state.

What it all boils down to is that the CDC are not even studying CFS patients, but rather patients suffering from anxiety disorders and/or depression and calling them CFS patients. When absolutely no pathophysiology is extrapolated from these misdiagnosed patients, the CDC then claims that no pathophysiology exists in CFS, which is patently false.

This also extends to treatment. In England, where a similar definition to the CDC’s new ‘Empirical’ definition for CFS, the Oxford definition, is used by almost exclusively by psychiatrists and psychologists who view CFS to be a psychiatric condition, these same psychiatrists and psychologists have manipulated the UK national guidelines, otherwise known as NICE, into recommending Cognitive Behavior Therapy(CBT) and Graded Exercise Therapy(GET) as the sole forms of treatment to be made available for CFS, and for any and all tests that have been shown to have the most promise to show biomedical abnormalities in CFS patients to not be done and for basically every treatment other than CBT and GET to not be recommended. The CDC is currently actively working with these same psychiatric researchers in what appears to be an effort to do the exact same thing in the US. The language is the same, the same people are involved, etc.

My point is this: The CDC itself is one of the main reasons why the effects of CFS are still so unfathomable, and they will only do more if we the patients and our advocates let them and everyone else know in no uncertain terms just what a pitiful job they have done and continue to do.

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Eileen Holderman May 7, 2009 at 3:13 pm

Dear Cort:

Thank you for your comments and analysis regarding the CDC meeting. And thank you for providing a forum for other’s comments.

Eileen Holderman

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Jeanne McCombs May 7, 2009 at 6:19 pm

It seems apparent to me that the problems with the CDC have been instituted by lobbyists for insurance companies. Most long-term disability policies only have to pay out for two years for a psychiatric illness. That is the problem I ran into. For 11 years I was misdisagnosed as having a “conversion disorder,” or psychosomatic disorder with depression, or some similar wording, after being hospitalized time after time with all the tests (that were allowed by my insurance companies) being “mostly” negative. I had objective symptoms that were just ignored: low-grade fevers, changes in my EKG, abnormal movement disorder named pseudo-seizures because my EEG’s were “essentially normal,” and obvious weakness in my extemities. The list of subjective symptoms such as tinnitis, dizziness, loss of balance, headaches, and on and on, were numerous. I had no signs and symptoms of depression, none whatsoever, in the beginning. I finally got a correct diagnosis of myalgic encephalomyelitis,as the “written in” diagnosis, but CFS was “checked off” because it had the numerical diagnostic code for insurance purposes. So I tried to get my long term benefits reinstated by Prudential Ins. co., (even with an attorney and three attempts), benefits were denied and they continued to insist that MY ME/CFS was caused by depression, not the other way around. It was absolutely ludicrous. The whole thing just disgusts me when I think about it. I thank God that I have finally found a doctor who listens to me and tries to help me all she can.

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Jeanne McCombs May 7, 2009 at 6:29 pm

Thank you for giving us a chance to read about the CDC meeting and for giving us a chance to comment on it or tell our side of the story.

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Mary Schweitzer May 23, 2009 at 7:49 am

Just reading these again (while impatient for the CFSAC meeting in a few days – along the lines of the intertwined tales of this disease at CDC, with British psychiatrists, in English public medicine and international insurance companies -

There is a new language springing up

- “MUS” – medically unexplained symptoms,

- “MUPS” – medically unexplained physical symptoms

- “MUPSS” I medically unexplained physical symptom syndrome

The insurance companies are already witing contracts excluding them, and there are plans under way to introduce the concept in both ICD-11 and DSM-V.

CFS is the poster child for MUPSS.

We have a serious battle on our hands, but this administration will side with us if they believe us.

Be wary of anything that acts like a wedge issue to divide us – we must stick together on the insistence that British psychiatrists stay out of federally funded work on our illness, and that any federally funded committee put together to study our illness not permit psychiatrists to outnumber other medical specialties.

We do not have a psychiatric illness, and we will no longer remain invisivle.

Mary Schweitzer

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marie moore June 1, 2009 at 11:55 am

to all of you, my fellow sick comrades,

i just want to say THANK YOU ALL……..for ‘ being in the trenches ‘ and SHOWING UP(in any way)
in this battle.

i am so VERY…GREATFUL… for ….. ALL OF YOU ………

i have been so sick (15yr), that this is ONE fight, in my life(at least for today !) that i have not been able to show up for.

** hello mary, we spoke a yr. ago, and you were so kind for ‘ showing up’ for me.
i was way …too…close, at that time, in ending my life !
and i STILL….see your name out there, giving out in any way you can.. xx
that was a year ago…and i am still… planing on touching base with you again.
(computer writing..not so good w/the body)
i am so sorry… you are so sick now… xxoo

may we all please keep in mind… WHY ….the CDC does NOT… WANT, to do ANYTHING,
to help ‘ US’….. in finding ANY ANSWERS, to these terrible illnesses …that ALL of US.. are dealing with.
( please ref. to Garth Nicolson work, w/ immed.org and his book ” PROJECT DAY LILY “.
Project Day Lily tells the TRUE story of Dr. Nicolson’s and his wife, Nancy, and their struggles with
finding…. ANSWERS TO OUR ILLNESSES ! )
i call him a ” HERO. ”

well again…..thank you….thank you,
marie

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Sarah June 2, 2009 at 2:42 am

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Cort, that is a quote from you above. My memory is short, I need it in front of my eyes.

We know now that Dr. Reeves thinks the CFIDS Association of America is controlling the opinions of all who speak out to the CDC. That is what Reeves said in a response to a question from Lenny Jason regarding the name, transcript from a meeting, posted on line. Thus you deduced correctly. CFIDS Association makes the obvious point that is not true. Obvious to me, at any rate. Not so obvious to Dr. Reeves. It is a convenient self-deception to think we are all led by Kim McCleary, lets him avoid seeing our comments as independent. Even when the comments come from people associated with a different organization, or no organization at all.

CFIDS Association of America throws the CDC’s own number back at them. The CDC owns the 4 million in the US count for CFS. It is rather odd that CDC could say the incidence of the disease grew from 1 million (their first study) to 4 million (their second study), and not think that is a reason to increase resources to stop the spread of the disease, or find effective treatment. The irony of that goes right past the staff of CDC.

Whether 1 million or 4 million is correct is another topic altogether.

Is CDC this rigid in all its interactions? I only know them for what they have done with or to CFS. Some of the rigidity is shown in how CDC believes only the results of their very own studies; not allowing lesser staff (like Dr. Vernon once was) to speak as independent researchers. That was very revealing, the e-mail she sent to you when she was still staff to Dr. Reeves, that only he could comment or respond.

In my old, old life, I worked as a researcher (not medical) at Argonne National Lab. We all spoke for ourselves, essentially had academic freedom, even as we worked in project teams. It is hard for me to imagine doing research — creative & open thinking — in such a rigidly controlled work place.
Sarah

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Danette Jett June 2, 2009 at 11:01 am

Thank you for the information on the meeting. As a patient with this devasting illness I can only wonder when the CDC will make some much needed and / or appropriate changes.
1) The name is not applicable to the illness with the exception of one symptom Chronic Fatique. I do have the chronic Epstein Barr Virus which the CDC states after 6 months it is considered CFS. Well, I have felt the chronic fatique from day 1 along with all the other symptoms. What about them? The world thinks we have chronic stress syndrome….they dont get it. Something like jet lag, or simply just sleepy. It is a fact that what we have is a nueroendoctrine disorder that is disabling. I am burnt out on telling the world that I have CFS.
2) We need a name to go with this devasting illness that does it some justice. And next we need to educate the public along with the medical profession. Is it not enough to be so sick but to have to feel obligated to be your own personnel advocate for this unknown illness. My dad said he heard it was a mysterious illness, Mysterious it is ….thank you CDC. We the ones who are sick and suffering….appreciate your cooperation. Wake up and take some action….educate the US on this epidemic that 4 million Americans have. This is a world wide problem. When can the patients atleast have the peace of knowing that when we say we have………ME / CFS we are taken seriously and people know we are sick.

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Danette Jett June 2, 2009 at 11:16 am

One more thing I might add. It is evident that I have the Chronic Epstein Barr Virus which causes CFS/ME and fibromygia. I have viral symptoms on a daily basis…swollen glands or lympths, horrible headaches, some migraine spells that last 4-5 days in a row, nausea everyday, hypoglycemia, vertigo, adrenal insufficiency, insomia, joint and muscle pain, vomiting, fever, and so on. I have had some mild seizures. This is a serious neurological disorder…not just chronic fatique.
A year ago I started developing signs of MS and my nuerologist and I have waited 25 months for the much needed MRI and spinal exam I have needed. Thanks to our govt and its waiting period for SS disability and Medicare. When are we going to be taken seriously? I sit and watch my health slowly but surely detioriate. My question is if I wouldve had the proper insurance and medical treatment would I be were I am now. I hardly think so.

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carol anna G June 5, 2009 at 1:45 pm

I read an article by Adam Feuerstein in the street, saying it Ampligen should not be approved because of the side effects.

TO all CFS patients we are on the front lines we need to do something. If Ampligen does not get approved we need a plan. We need to rally and March to DC. I know I am bed ridden too, but we are the ones that need to make this happen the new patients have no clue what they are in for. We Do.

Look at the MS groups, they are so organized we can learn how they got there clinical studies going for that is what we need. If enough people write in and demand treatment and show our faces in wheelchairs we will be heard. Where are the clinics? Where are the doctors other then Dr. Peterson? Treating doctors? Where? Why the year wait?

Please go read the article. We need to look at it this way, if the FDA does not approve Ampligen it is like not giving medicine to people with MS. It will be the fault of the CDC and any leader involved in this process that has been involved with the CDC for years. But we need more doctors and more treatments. We need to take a stand somehow and get it together. Enough with the all the BS talk. WE NEED MEDICINE, DOCTORS AND TREATMENTS.
I am mad and others should be to, what is being done to us seems criminal.

Why should people with MS an illness that does not kill people be allowed to get medicines that are toxic? Has our society really sunk to such a low moral value or no morals when it comes to people who are very ill? MS has come a long way because of medications, and it took them years to do clinical studies. Now they are talking about cures. Once MS was thought to be a mental illness.

Why not let people with CFS live and die a long horrible death? This is what the FDA and CDC will be saying is it not? Why should we allow them to take a medication that maybe toxic? Do you take Tylenol? If you take Tylenol for four days as directed you may be at risk of liver damage. All medications have side effects, but to deny a better quality of life to people is to let them live and die an inhumane existence and death.

For that is what people with CFS are doing and there is a difference in CFS and MS in the death rate. MS does not effect your lifespan, but CFS can shorten your lifespan by 25 years.

Why not mention patients who have been on Ampligen that are now 60% to 100% better? That can live life and do things they could not do without Ampligen? We are talking about 1-4 million people suffering without any hope.

People with CFS are already dead. They disappear from live and live a lonely painful existence inside there homes. There are no doctors and no treatments. This must be one of the one of the cruelest illnesses of our times.

This is a quote from dr. Loveless an Aids doctor who testified before congress on CFS. Dr.Loveless, an infectious disease specialist who runs an AIDS and CFS clinic
stated that “a CFIDS patient feels every day significantly the same as an AIDS patient feels two months before death”. This was in 1995, how long do we have to continue to suffer?

I would like to connect with others for if Ampligen is not appoved we need a plan. I cannot wait a year for the Whittemoore Peterson to open, I will not make it another year. I am really in very bad health. HHV-6, IGG subclass, mycoplasma.

I am having nurological problems now, MS type. I need a doctor or I will die. I never spoke those words before and I have been ill for 19 years but the last 3 years and now the last 6 months I can feel something progressing in my body. I am on doctors lists and still waiting.

THis is criminal that I cannot get a doctor to help me. Why are there no clinics open? Why?

THere is no reason for this to me. There are treatments out there. WHy does it take a year to see a doctor?

Is this all okay with everyone or is it just me? The CDC seems to be breaking laws. NO way would they get away with this people with AIDS. People you need to get fired up, ours lives are being taken away from us.

carol

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Richard Perillo October 20, 2009 at 7:09 pm

I have for decades believed that the powers that be have always known that this was a difficult, hard to diagnose, disableing disease, with no cure in sight, that many could claim were affected that were not, and collect disability benefits. My onset was the slow type beginning in the early seventies, raging in the eighties, easing a bit in the ninties untill a major heart attack in 98, then cardio SS disability in o5. VA insurance has paid out many thousands in medical bills becaused I lived. Were I diagnosed and put on disability 35 years ago it would have been very expensive. It has been much easyier on the coffers this way.

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