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Systemic Change Needed: CAA Hits CDC Again

Posted by Cort Johnson

“The CDC’s CFS research group has lost it’s mojo” Kim McCleary

Patient anger towards the CDC’s CFS research effort has been high for many years and the patient comments provided many heartfelt and cogent critiques of the group at the public comments meeting but the CFID’s Association of America is in a different position. For one, after getting senate  (Harry Reid) and congressional help they’ve dug deep into CFS research teams records for the past year – something no patient could ever do. With Suzanne Vernon, the former lab chief of the program, on board, they have a special insight into the state of the CDC’s research team as well. We knew they were fit to be tied at the low productivity of the group and what they’ve asserted is wasted money and mismanagement. But what about the rest of the program?

Three members presented, the President and CEO of the organization, Kim McCleary, the Chairman of the Board, Jeannie Spotila, and Board Member, Katrina Berne. What is it they want the CDC to do?

The CAA wants to rip the three aspects of the CDC’s effort on CFS out of the research team’s hands.

‘these goals are not well suited to the individuals and leadership currently working in the Viral Diseases branch”

They believe that the physician education program, the outreach into the public health domain, and the clinical intervention trials should go elsewhere. Certainly it doesn’t make sense to have a researcher leading a physician education or a public health outreach effort – that’s not his/her area of expertise, but above and beyond that logic, the CAA has had trouble getting Dr. Reeves to collaborate on anything. Indeed the lack of collaboration- the lack of interest, really, in the rest of the CFS research field has been a key theme. Notice that Kim said these goals are not suited to the individuals leading the program – no need to read between the lines there.

The CAA responded to complaints that the physician toolkit was heavy on research and light on treatment options by building their own program. Then they housed it on Medscape – a central provider of physician education, where the program took off, quickly reaching far more physicians than the CDC program ever did. The CAA didn’t want to go it alone; they would have loved to have the CDC’s seal of approval on it – that, after all, could only help to attract physicians to it but Dr. Reeves refused to collaborate.

The CAA Does Not Want the CFS Research Team to Run Clinical Trials –  Running clinical trials is something that should fall into their area of expertise. The external Review Committee proposed that the CDC team should lead the way in both education and clinical trials. Yet Kim McCleary in a withering statement questioned just how such an insular group could lead the international community on anything.

“Note that this group has become increasingly isolated and insular and is not collaborating with any clinical investigators yet it proposes to develop an international consensus on the management of CFS”

She’s right – it’s hard to know just who the CDC is leading these days. Their biggest and most important effort at leadership was the Empirical Definition which the research community has thus far ignored.

(Dr. Klimas is also wary about the CDC’s running clinical trials. She believes that unless they subtype this enormous group of patients into smaller groups then any clinical trials the group runs will be worthless. Ironically the creation of the empirical definition and the bloated patient group it created has strengthened calls, demands really, that the CDC finally get serious about subtyping. Nothing yet indicates that they’re interested in doing that.)

The CFIDS Association of America dearly wants the CDC to share its data. All three CAA officials highlighted the need for the CDC to share its data. This is clearly part of Dr. Vernon’s vision of a stronger, more effective ME/CFS research field. At both the IACFS/ME meeting and the last CFSAC meeting she proposed that a collaborative international data and specimen center be created that gives researchers ready access to all the data on ME/CFS. At this point the CDC, a public institution, is sitting on a simply enormous amount of genetic, gene expression, clinical and laboratory data; it’s easily the largest and most complex data set on ME/CFS in the world. (Check out Dr. Vernon’s Letter to the CDC)

In fact they have more than they know what to do with. At the Reno conference Dr. Boneva presented on gynecological data that was gathered from 7-10 years ago. Not only had that data sat there for that long but even at this point her study was a preliminary one – it still hadn’t incorporated the hormone data they’d taken at the time. Dr. Vernon has spoken, before, of how little of the data that the program has that they’re able to actually utilize.

The CAA Wants the CDC To Collaborate

Dr. Berne underscored this theme by noting leadership’s basic lack of curiosity and the fact that the leadership did not even attend the bi-annual International Conference. One wonders how Dr. Reeves can justify missing the one meeting every two years in which all the important researchers in the field meet; one hopes that someone in the CDC is asking that question.

“At one time this program was doing good work” Kim McCleary

This is a remarkable turnaround from the CDC of several years ago which was collaborating with at least 10 different researchers and turning their data set over to a computational conference to game on. (The CAMDA conference uses one huge data set every year to test their skills on. In 2006 it was the CDC’s Wichita data set.)

But the CDC doesn’t seem to be interested in large parts of this field. I asked Staci Steven’s if the CDC was interested in the repeat exercise studies and she just laughed. The CDC does have tremendously skilled researchers – that team actually helped develop t he gene expression technologies that are being used today. (Dr. Klimas implored the CDC to turn their big gene expression guns on pathogens. )

Imagine the high-tech sparks that could fly from a CDC/Whittemore-Peterson Institute collaboration. It’s hard to imagine, though, that anyone on the CDC team has even had contact with the WPI.

Jennifer Spotila Asks for ‘Systemic Change’ – Jennifer Spotila was a lawyer before she came down with chronic fatigue syndrome 15 years ago and with her piercing voice she enunciated her points with almost laser-like intensity. There was no holding back here – no polite disagreement – this was  a full-on assault on the program. It’s hard to know how either party will function with the other in an other than adversarial role in the future.

She believes the problem lies not just in the program but in the CDC itself. November, 2006 seemed like a landmark event with the head of the CDC calling this disease an ‘urgent reality’ and the NIH representative (Dr. Agwunobi) stating the NIH had to do more.  Here at this event several CDC directors got up and cited the horrendous statistics, one even reporting how one CDC staffer has gone public with an in-house story of her struggle with ME/CFS (a brave soul!).

Jennifer , however, would have none of it. She played a central role in the CDC/NIH Nov 2006 Press Club event (doing 14 media interviews!) that promised so much but ended up meaning so little and she was furious. After stating that ‘the promises made that day have faded away’ she implied that the commitment to excellence that the CDC is so well known for is not shared by its CFS research team.

She believed that there should be “a thorough audit of the program’s use of funds…by personnel outside the program”

She took the team to task for providing such a shoddy draft plan asking “where are the performance measures”, the goals, the priorities, timelines, etc. What is the status of the empiric definition? Where were the commitments to accountability?

She suggested that even with their unique visibility the CFS research program risked losing ‘relevance’ inside the field; a remarkable assertion given how large the CDC’s budget is relative to the rest of the field.

She believes the program needs core changes stating that


“if CDC does not address it’s systemic problems …then the five year program will not be worth the paper it’s written on”.

Finally she ended stating that

‘..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. Berne Tempers Her Remarks (!) – Dr. Berne informed me that she markedly tempered her remarks but it was hard to know how (perhaps by not using profanities?) as she hit the program very hard again and again calling their spending practices ‘wanton’, their lack of progress ‘dismal’, stating that they do not take the disease ‘seriously’ and calling 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’.

Wrong Research Focus – Kim McCleary supplemented the ‘lack of relevance’ theme when she blasted the CDC for ignoring viral research while focusing on early life stress – which she called ‘a risk factor in most chronic illnesses’ . Then she lamented the opportunities lost to study during the avian, West Nile Virus and now swine flu epidemics. (Think about it – these patients have a viral trigger and they’ve been identified by the public health authorities (no need to search them out – no need to do expensive and time-consuming random sampling studies); all that’s needed is to follow them and periodically test them. These epidemics are a gift that’s been ignored.)

Both Kim McCleary and Dr. Berne took the research effort to task for the Empirical Definition with Dr. Berne calling on the CDC to adopt the Canadian Consensus Definition.

Conclusion -the CAA’s Board hit the CDC very hard. That the Board takes this personally should come as no surprise; 11/13 Board Members either have (or had) CFS or have a relative who does. Many have had it for many years. They’re fed up at the lack the progress and the opaqueness of the program. The lack of the progress is bad enough but Dr. Reeve’s leadership style just appears to make it doubly infuriating. ME/CFS isn’t a disease that divulges its secrets easily – that’s for sure – but on top of that to deal with a leadership that is not forthcoming, that is obscure in its intentions and doesn’t appear to play well with others – just makes things worse. All of that resulted in a very combustible session.

CFID’s Association of Americas’s Seven Page Memo to the CDC Director (March, 2009)

Check out comments, blogs and other resources regarding the CDC’s plan for ME/CFS on the CDC Strategic Plan Resource Page

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?

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