“Solving CFS’ and Stepping Into The Digital Age

October 5, 2009

Posted by Cort Johnson

The CFID’s is coming of age in the digital age. SolveCFS, a new website,  is a nice step forward for the CFID’s Association.  If you haven’t looked the CFID’s Association has been on a roll lately. Check these projects of the past few years:

  • A sucessfull research initiative
  • They hired a well known researcher, Suzanne Vernon,  as their Research Director (arguably their most important move over the past couple of years).  She has galvanized new research, brought new blood (finally) into the ME/CFS research arena and called for a major changes in the ME/CFS researchers work.
  • Created a successful ME/CFS Physician education program on Medscape
  • Broke with the CDC, uncovered financial problems at the agency and publicly called for new leadership.
  • Created a partnership with other disease groups

That’s alot of movement but the CFIDS Association has really faltered over the years is in their public outreach and particularly their use of the technologies available on the Internet. That’s clearly changing. If you haven’t visited their Facebook site you should; it’s a vibrant active site that they’ve plainly a lot of work into. It’s easy to lose touch when you’re not in touch – with the Facebook site the CAA began using the technologies of the Internet to put itself directly in touch with ME/CFS patients.

Now they’re Twittering and on YouTube and just this past week they unveiled their ‘Solve CFS’ website. This isn’t the stodgy green and white CAA website we’ve known (and tired of) over the years; this is nicely designed (Web 2.0 updated) modern website. It’s easy on the eyes, it looks fresh and inviting.

The CFID’s Association is changing; in  the last year it’s gotten a lot ‘younger’ and more open; things this 20+-year-old organization clearly needed. These changes are good for them and they are good for us.

Check out the new website below. Hopefully there is more of this to come from the CFIDS Association.

http://www.solvecfs.org/ABOUTUS/tabid/67/Default.aspx

7 comments

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John October 5, 2009 at 7:50 pm

One thing I’m wondering is if the ‘Solve CFS’ campaign is just an excuse for CFIDS Assoc. to increase their ‘unrestricted’ donations, possibly due to increasing numbers of people earmarking their donations specifically towards research and away from activities they feel are not giving an acceptable return such as lobbying.

For instance the NIH decreased CFS research funding by 20% from 2008-2009, with plans to decrease it another 25% on top of this from 2009-2010. The CDC is also in the pits with regards to research dollars spent. It’s hard to see what hard return has been gotten from the money spent by CFIDS Assoc. for lobbying if these are the results, and I am one of many who feel that without research lobbying and education are useless anyways. It also raises the question as to whether CFIDS Assoc. is throwing good money after bad in regards to their extensive lobbying efforts.

As a result I contacted the CFIDS Assoc. some time ago asking why the option for earmarking donations was taken off the new donations page and was told that-”All of the Association’s resources are now being directed to furthering our research program which means all donations received are used to support the work of Dr. Suzanne Vernon, our Scientific Director, and the six research investigators currently receiving funding from us… We still accept donations earmarked for research, but to avoid confusion, we have removed this from the drop-down menu on the donations page.”

This impressed me, though something didn’t quite sit right. ‘Furthering the research program’ isn’t the same as spending the money directly on research, and this combined with the fact that out of $1.1 million dollars raised in the ‘Campaign to Accelerate CFS Research’ only $650,000 had been allocated to research made me question how transparent CFIDS Assoc. was really being.

Now on the new ‘SolveCFS’ page, contrary to what I was led to believe earlier, it states the following- ‘The Association focuses its resources on advancing research, public policy and communications about CFS. The SolveCFS Campaign was launched in 2009 to advance these efforts.’ In reality this is no different than the ‘unrestricted’ option for donations which has been in place for years, as you can see below-

The four options for earmarking donations(which still can be done, just not on the primary donation page) are unrestricted, research, advocacy and education. The latter three parallel the categories listed on the ‘SolveCFS’ page, with research=research, ‘public policy’=advocacy (lobbying), ‘communications’=education and unrestricted being a combination of all of these.

So far from the options for earmarking donations being removed due to ‘all of the Association’s resources being directed to furthering the research program’, in actuality it appears that donations are simply being directed to the ‘unrestricted’ category- lobbying, staff salaries, etc.

When the very reason why earmarking donations exists in the first place is to give people the option of choosing where they want their donations to go, masking this option by coming up with a fancy new name for the exact same agenda which people have already decided they are not interested in supporting really seems kind of obstinate.

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Joanne October 6, 2009 at 12:19 am

The very first thing ME/CFS patients need to do is to get up to speed on what is happening with Lyme Disease. No not what your doctor or consultant is saying but read the presentations to IDSA recent review panel
http://www.idsociety.org/Content.aspx?id=15026
Number 15 Steven Phillips presents 25 studies on seronegativity and persistent infection, on 18 occassions he highlights the authors of the discredited 2006 guidelines to have been involved in that research but failed to mention in their guidelines. WHY?

With patients not always aware of the sometimes poppy seed sized tick biting them.
With 30-40% only getting the bulls eye rash.
With 50% of tests failing
With our busy doctors being fed misinformation following IDSA discredited 2006 guidelines Is it any wonder so many of us are diagnosed with ME/CFS when in fact we actually have Lyme Disease and on long term antibiotics we can and do get our health and our lives back.

Dr Shor an ME/CFS specialist has a lot to say about the links with Lyme much can be found through Google but this is a short version.

http://www.publichealthalert.org/Articles/scottforsgren/Dr%20Sam%20Shor.htm

All ME/CFS boards and associations have a duty to publish more information about Lyme Disease because at present patients are being mis diagnosed with ME/CFS when they have Lyme.

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John October 6, 2009 at 3:10 pm

The ‘What is Chronic Fatigue Syndrome’ page of the website is troubling- “Although the cause of CFS isn’t yet understood, there is a growing body of research showing that physiologic, environmental and behavioral events experienced over the lifespan—combined with a genetic predisposition—may lead to CFS.”

‘Behavorial events experienced over the lifespan’- ie Reeves & Co’s ‘childhood abuse/allostatic load’ theory, is being presented here as fact even though the doctors in James Jones’ Grand Rounds presentation mentioned more than once in the Q&A session that they had never even heard of it, much less it being some sort of established scientific principle as it’s being presented here.

This is basically more of the non-confrontational CDC-acquiescing style the CFIDS Assoc. is known for. ‘Allostatic load’ is merely an idea that some isolated and out of touch individual wrote a misinformed and misguided paper about, not an established or even prevalent theory in the biomedical research community. I wonder how the board of directors at CFIDS Assoc. feels about the very organization they serve for calling their illness behavorial, even if in part.

What can you expect though from an organization which actually sends out newsletters containing stories such as how a ‘CFS patient’ got rid of ‘CFS’ by coming to terms with childhood sexual abuse?

I wonder how much it would cost for interested individuals to chip in to educate the CFIDS Assoc. on the illness they advocate for? Maybe send them some Invest in ME Conference DVD’s?

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cort October 6, 2009 at 6:25 pm

John I know that it’s troubling to see that in print – particularly when we seem to be fighting often times an uphill battle against that issue but I think that the vast majority of information that the CFIDS Association puts out deals with physiological issues and examines the physiological aspects of ME/CFS. Almost all of their print and all their research funding – for the past 20 years – deals with physiological issues and they publicly took the CDC to task for beginning cognitive behavioral therapy studies. I don’t see any evidence that they’re focused on behavioral issues at all! I think you have to ignore a lot of other information in order to come to the conclusion you did. Honestly I don’t think it’s fair to the organization.

Wastebasket Illness- They’re not in an easy spot. We know that chronic fatigue syndrome is a kind of wastebasket illness – that there are probably many many different types of chronic fatigue syndrome. We also know that studies have shown that traumatic events including emotional stressors do appear to trigger chronic fatigue syndrome in some individuals (just as they trigger rheumatoid arthritis in some individuals). Until the different subsets are teased out I think that’s just the way it’s gonna be and since the CFIDS Association represents all chronic fatigue syndrome patients – not just the ones that you might identify the most with – I think that they are bound to on all the scientific evidence on this disorder.

I don’t include myself in the emotional stressor category but I don’t mind the CFIDS Association stating what they stated because all the evidence that I know of points to an organization that believes that while behavioral therapies may be somewhat helpful in this disorder – as they are in all chronic illnesses - but that they don’t begin to provide a definitive answer for it. They don’t emphasize this aspect of CFS, they don’t study it and they don’t promote the study of it – in fact they’re doing the opposite. For me that’s the end of the story.

With regards to that persons story. I suppose some people will still be slamming the CAA five years from now for putting it on their website. (She did not by the way conquer her ME/CFS by coming to terms with her sexual abuse. I read her book – she came to terms with that experience many years before her illness was resolved – it was her constant seemingly unrelenting immersion in different spiritual techniques that finally – many years later ‘seemed’ to have propelled her into a healthy state. )

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Keith... October 6, 2009 at 5:39 pm

Joanne
I hear a lot about people with Lyme being confused with CFS. I’m sure this happens and as a person with CFIDS am well aware of it. But I believe that the reverse is probably more true. I feel more people are diagnosed with chronic Lyme who probaly actually have CFS. The medical establishment is much more accepting to diagnosing Lyme than CFS. Everyone believes in Lyme. Many doctorsstill don’t understand or diagnose CFS . So all things being equal a person is more likely to be diagnosed with Lyme given the same set of symptoms.
The CAA seems to be reaching out to patients lately. Why now? I still am slow to trust them. I feel they have let us down in ways in the past. Hopefully they keep it up and there motives are pure. I love Suzanne Vernon and the research. Perhaps they have gotten smart and are trying to be more grassroots again. Lets see if they have found there political bearings.

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John October 6, 2009 at 8:53 pm

I agree there are different subtypes of CFS, however I also think there are people misdiagnosed as CFS who actually are suffering from depression, anxiety disorders, etc. To me even if someone technically fits the diagnosis by finagling the ’4 extra symptoms’ criteria it still doesn’t mean they have the illness in question. It’s about triage. People who really have the illness get priority over people who are simply misdiagnosed.

I guess to me the ‘behavorial’ part kind of smelled of Dr. Vernon’s long tenure at the CDC, which is known for exactly that viewpoint, and which might well influence how she views the illness. She was(is?) involved with some paper about some stupid theory about ‘fight or flight’ response. This combined with the long history of extremely naive and misinformed information which can and does come out of the CFIDS Assoc. just steams me up. This is what people read. Not everyone is familiar with the literature. Why put out stuff like that when it’s bs in the first place, plus it leaves the door open for the Christine Heims, Peter Whites and Simon Wesselys to just go to town with their ‘special blend’(re: rotten garbage) of ignorance, intellectual dishonesty and loquacious wordplay. Plus all the stuff on their website about how CFS isn’t contagious, etc. I know not all subtypes are likely to be contagious, but the WPI doesn’t hesitate to sayat least CFS is ‘quite possibly’ contagious, adding- “Quite possibly. Subgroups of patient have been associated with “outbreaks” of disease and viruses such as EBV, HHV6 and enteroviruses.” CFIDS Assoc. doesn’t go there because it’s not PC.

It’s kind of a chicken and egg type thing- can CFIDS Assoc. not hire more informed individuals without money, but why would anyone give them unrestricted money if they’re going to put out crap about ‘behavorial events over the lifespan’, childhood sexual abuse, etc? Can they seriously not ask their staff to have a basic understanding of the illness? The reason why it’s so important is because they put out the very information why people don’t take CFS seriously! Nobody cares about neurotic individuals! Maybe(quite possibly) it’s not PC to say, but it’s true. If someone can get better simply by changing their ‘cognitions’, they’re not going to get people to take notice.

CFIDS Association might or might not focus on it, but it’s right there in black and white. The question is ‘What is CFS?’ The answer they give is that it includes ‘behavorial events experienced over the lifetime’, which is based on research(if you can call it that) that we all know either includes a patient group(Empirical) that the IACFS/ME wants the CDC to not only quit using but to actually make a public statement in regards to this, or another patient group(Oxford) which is basically the same thing as Empirical, people misdiagnosed by stupid methodoligically challenged researchers(again, it’s open to debate whether they deserve this label) who are just depressed/anxiety disorders, etc.

Maybe to some it’s not a big deal, but to me it’s just salt in the wounds. I still to this day don’t know whether my own mother believes I’m sick or not despite my being ill for over 12 goddam years(gradual onset) due to exactly stuff like this! It took me honestly telling her I never wanted to speak to her again to get it through her head, and I’m still not sure what she thinks. Not to mention the looks I get from doctors that I’m sure just about every CFS patient knows all too well, that’s a whole another story.

Ignoring ignorant people when they begin with the psychobabbling is one thing, it’s another when you hear it from the very organization established in an attempt to rectify the situation. When incorrect information is distributed which affects my chances of possibly getting treatment sometime in my lifetime, it’s game on.

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cort October 7, 2009 at 8:41 am

John you bring up lots of points. Here’s my take on some of them.

CDC, Behavior and Dr. Vernon – I disagree that the CDC when Dr. Vernon was leaving the lab was focused on behavioral issues. They focused heavily on gene expression, gene polymorphism and laboratory data. If you check out this list of studies I think you might change your mind http://www.cdc.gov/cfs/publications/pathophysiology.htm. Yes they were focused on the neuroendocrine response but I do not equate that with viewing this disease as a behavioral illness. They did not engage in any CBT studies are graded exercise studies, etc. They have clearly turned in that direction in the past two years.

Allostatic Stress – I interviewed Dr. Vernon when she first came on board in the CFIDS Association. She was clearly not enamored of the all static stress hypothesis. My impression was that she felt it was a dead-end. None of the studies funded by the CFIDS Association or the studies that they applied for funds for involve allostatic stress.

Contagious Illness – The WPI went out on a limb when they proposed that CFS is quite possibly contagious. A series of studies that followed patients who had come down with this illness after one of three types of infection found that all of the patients were able to fight off the infection (ie were not contagious) but that something had happened during the early stages of infection that caused to come down with ME/CFS. The WPI has their own internal evidence that they will present in do time – until they do that I think the CFIDS Association doesn’t really have a choice in the matter. Actually I think it would be PC for them to state with the WPI stated – the patients are after all their most important constituents.

Behavioral events – Several studies using the 1994 definition have found that psychologically stressful do appear to increase the risk of coming down with ME/CFS. The latest was a study from Dr. Kerr http://www.ncbi.nlm.nih.gov/pubmed/18419428?ordinalpos=5&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum. This doesn’t bother me; the same thing is true for immune diseases like rheumatoid arthritis and asthma. The problem is that the autoimmune correlation to stress is not mentioned a lot in chronic fatigue syndrome papers.

The CFIDS Association, however, just applied for a grant for a wide-ranging study to assess whether vaccinations, infections and other factors may have precipitated an autoimmune response in ME/CFS. This is also why I don’t mind the neuroendocrine emphasis as much as others; the neuroendocrine system regulates the immune response. (This is why people with autoimmune diseases often take steroids- they shut the immune system down.)

I think patients have become frustrated at the CFIDS Associations unwillingness to take a stand on research issues. I think with Suzanne Vernon on board they will be more likely to do so. They have come out strongly against the empirical definition and against more cognitive behavioral therapy studies.

If you want to check out some more information on Suzanne Vernon http://aboutmecfs.org/Conf/IACFS09Vernon.aspx

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