Last Chance at the CDC: the CFID’S Association’s Critique of the Five Year Plan

June 29, 2009

Posted by Cort Johnson

Our opportunity to impact the CDC’s CFS research program ends after tomorrow (June 30th) The CFID’s Association of America has just released a critique of the five year review that’s longer than the draft plan itself. It’s a very impressive forward thinking document that’s also a great resource for building your own critique of the program. Below is my take on the CAA’s major points.

Simply e-mail the CDC at CFSResearchPlan@cdc.gov to give them your input.

Program Lacks Innovation – perhaps the most damning criticism of a research plan is that it’s just not very good research. The CDC’s only major research project will use brain imaging techniques to assess the effectiveness of two treatments (CBT, Ampligen) that we already know are not the answer to ME/CFS; the program is not leading this field in innovation, it’s leading the field in picking up the pieces of other research efforts.

In the last year or so the WPI Institute claims it has documented a unique subset of patients, the Pacific Fatigue has found a reason for the exercise/activity problems in about half of ME/CFS patients , Dr. De Meirlier has evidence of abnormal gas production in the guts of ME/CFS patients and the CDC has…….. found that an increased incidence of child abuse is present in its bloated sample of ME/CFS. The factors the CDC currently believes contribute to ME/CFS include obesity, poor nutrition, a sedentary lifestyle, maladaptive personality styles, child abuse. Is this the kind of program that should be leading the discussion on ME/CFS?

Pie in the Sky Plan – The plan promises everything; an international network, effective physician education, effective public health outreach but when it comes to the nitty-gritty of accomplishing those things – of producing, as the CAA puts it, an ‘actionable plan’ – there’s simply no there there. It’s astonishing that after all the public outrage over accusations of financial Dr. Reeves was allowed to deliver a plan that had no spending component. Check out some incidences of possible waste in the program.

· The 2004/5 Georgia group of patients which was established at great cost has apparently been lost because the CDC never followed up on them in a timely manner. Dr. Reeves noted that after a few years without follow-up the group is essentially lost yet that group has been out of touch for four/five years now. That group was never very big to begin with – losing a significant number of them would be very costly – yet it appears that that’s what’s happened.

· Dr. Reeves stated that the in hospital costs of the Emory study would be from $1-$2 million yet the program has already cost five a half million dollars on it. The CDC has already spent significantly more money simply finding its patients for it Patient Registry (over $2 million dollars) than anyone outside the CDC has spent on an entire CFS research project – in fact it’s not even close.

· The CDC bet the boat on the Empirical Definition. Before ensuring that the definition was accepted by the research community the CDC used it as the foundation for every research project over the past six years. Researchers get raked over the coals for endangering a single study but this mistake put dozens of studies at risk (as well as the studies for the forseeable future). Yet there seems to have been no accounting for this enormous error. The CDC has now admitted the definition was a failure.

More Dharma Initiative Than Plan- most plans are strictly defined; they have a mission statement, goals, and overall strategy, a tactical plan to carry out the strategy and outcome measures to evaluate how their effectiveness. Instead of a rigorous plan the CAA charged that the CDC presented a glossy, jargony model better suited to the Dhama Initiative than a rigorous scientific environment (!).

“Speaking purely theoretically, this plan appears better suited to an independent, privately funded research institution, a “Dharma Initiative” of sorts.”

“While its language emphasizes collaboration and partnership, its design reinforces the isolated conduct of one small group of investigators, working at the direction of the branch chief without connection to colleagues inside the agency and at other institutions.”

Not a Winning Team- Even if the program had the money they need the CAA asserts they wouldn’t be successful because they simply don’t have the expertise. The team is tasked with education and public health outreach but has no training in dealing with either. In fact neither they nor their superiors have any training in dealing with a chronic disease like ME/CFS. Although the program is housed in the division that works on acute infectious outbreaks the CFS team hasn’t done any serious infectious (or immune) research in over ten years. Indeed the CAA pointed out that there is not one reference to ME/CFS as an infectious disease in the entire strategic plan. The program is currently managed by virologists who have morphed into endocrinologists, neurologists and psychologists. Is that a recipe for success?

Move the Program – How about support? If you were a virology department head would you have any interest in funding a non-virologic disease? Apparently not as funding has declined by 25% in the last ten years. While the program sticks out like a sore thumb in the Rickettsial division it would very naturally fit in the CDC’s chronic illness division that also contains such diseases as lupus and Parkinson’s. The fact that it’s still sitting in a division that doesn’t know what to do with it s yet another indicator that the CDC doesn’t give a darn about this disease. Moving the program takes work and resources and those are the last things the CDC apparently wants to expend on CFS.

Collaboration Needed But Not Likely – Dr. Reeves cited several instances in which the program is collaborating. The CAA did their due diligence and went and talked to those ‘collaborators‘ . This is what they report:

“Investigators with whom CDC has reported working were consistently surprised to be listed as collaborators, and replied that either their own inquiries had been unanswered or initial interest from CDC was short-lived and not acted upon. The branch has a long history of burning bridges with and otherwise distancing individuals who express differing viewpoints. Only those held in favor are considered as potential collaborators.”

Yet almost half of the CDC’s plans in the draft review require collaboration for them to be successful.

Ultimately the CDC’s lack of interest in much of the research occurring in the field is the most damning criticism the CAA will levy. It’s terribly disillusioning to sit down and ask a researcher if CDC has shown any interest in their work and to have them actually laugh out loud.

“All of the preceding objections culminate with this point – CDC’s insularity and lack of cooperation with other CFS researchers (including those whose studies have been funded by NIH) have impeded progress that might have been possible under a more unified approach”

If you agree with these points use them to critique the most important ME/CFS research entity on the planet. We all deserve much better.

E-mail the CDC at CFSResearchPlan@cdc.gov to give them your input.

3 comments

{ 2 comments… read them below or add one }

yogurt420 July 1, 2009 at 2:43 pm

Hi Cort,

I was looking at this comment you made. “The CDC’s only major research project will use brain imaging techniques to assess the effectiveness of two treatments (CBT, Ampligen) that we already know are not the answer to ME/CFS; the program is not leading this field in innovation, it’s leading the field in picking up the pieces of other research efforts.”

How do you know that ampligen is not a good answer for the people with ME/CFS?

Any reply would be appreciated.
thanks
yogurt

Reply

cort July 1, 2009 at 4:52 pm

Yes, several people have asked about this. I said Ampligen is not the answer to ME/CFS and it’s not; I don’t think any of the physicians who’ve used it think it’s THE ANSWER but that doesn’t mean Ampligen isn’t very helpful to many people or that it hasn’t in some cases even saved some people’s lives. I’ve met several people whose health just tanked after they went off Ampligen – it was really helping them – which is, if you think about it, another reason why it’s not the answer too ME/CFS – it doesn’t cure it.

So good drug – really crossing my fingers that gets approved – but unfortunately not the answer to ME/CFS.


Ampligen

Reply

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