CDC is seeking input from interested parties on issues that CDC will consider as it develops this research plan...The objective of the five-year strategic plan is to conduct public health research leading to the control and prevention of medically unexplained chronically fatiguing illnesses, in particular CFS.
My first input would be to say that CFS is not merely a "medically unexplained chronically fatiguing illness" and if the CDC was reading current research by anybody but themselves they would know that. But I digress. The catch to this input was that one, "stakeholders" had about a week to prepare their "input" and two, CDC was only asking for input on five specific areas:
1. Studies of Defined Populations
2. Provider-based Patient Registries
3. In-hospital Clinical Studies
4. Laboratory Studies
5. Provider and Public Educational Intervention Research
Among the ways that we "stakeholders" could provide input were the traditional mail and/or email, as well as a fancy, technologically-advanced telephone conference on the afternoon of April 27th in which "stakeholders" could call in and provide comments. And boy oh boy did ME/CFS patients, researchers, and advocates call in!
The CFIDS Association posted remarks from among their comments on their Facebook page (also posted at Co-Cure - hopefully one of those links will work if you're not on FB or CC) and here are some highlights:
Katrina Berne, Board of Directors of The CFIDS Association:
The history of the CDC in regard to CFS is dismal, beginning with assigning a name both trivializing and inaccurate, an inadequate and inaccurate case definition, misappropriation of funds and poor-quality research, in terms of both the focus of its studies and its methodology. The CDC has not had a meaningful or significant impact on our understanding of the illness or how to treat it...
...It is my understanding that no one in the CDC attended the March, 2009 symposium presented by the International Association for ME/CFS in Reno, Nevada. This is a strong indicator of the CDC’s lack of desire to keep abreast of recent research developments, hardly a good sign of interest in moving forward by building on existing knowledge. (This was a truly appalling lack of professionalism on the part of CDC - M).
...Efforts to date have merely compounded the loud and clear message that the CDC does not take CFS seriously and has no organized approach to investigating this complex and devastating disorder.
From Jennie Spotila, Chairman of the Board of Directors for the CFIDS Association:
...Your "Draft Strategic Research Plan General Outline" was made available for stakeholder review only five days ago. This outline is so devoid of specifics that the only input I can offer is to point out what is missing...
...Your general outline could have been written two years ago, or ten. "Refine understanding of the etiologic pathways," "improve clinical management," "move CFS into the mainstream.”" Yes, yes, of course. There is nothing new in this list of objectives. There is no specificity, no measurable commitments, and no accountability. There is no acknowledgement of the many problems in the CFS program, and no plan to fix them...
Kim McCleary, President and CEO of CFIDS Association:
...But the CFS research group has lost its mojo.The CDC’s CFS research group receives half of the (meager amount of) money that the U.S. spends on CFS. Half. CDC has provided extensive financial information on its CFS spending between FY2005-2008, during which time expenditures totaled about $23 million. Since 2000, CDC has spent about $71 million on CFS and it has published 115 peer-reviewed articles in the same time. I doubt most academics could survive with that record...
...Goal 2 of the research plan, clearly an education-related activity, appears much better suited to either the National Center for Health Marketing or the National Center for Chronic Disease Prevention and Health Promotion.
...This group named the “Chronic Viral Diseases Branch” is currently doing little if any research on viral (or other biological triggers) of CFS...Instead, the group is focused on early life psychological stressors, a risk factor in most chronic illness, and proposes to study whether the economic crisis will result in a higher rate of CFS among respondents in the next phase of the Georgia surveillance study...So much opportunity has been lost to study the rates of CFS occurring in the wake of outbreaks of West Nile Virus, avian flu and now swine flu, and other acute infections or chronic exposures like toxins and molds. There is great opportunity cost to the choices that branch leadership has already made in an apparent vacuum within its own center...
That figure of $71 million dollars blows my mind. They've spent $71 million dollars in the last nine years and we don't even have a fucking biomarker much less decent treatment?! What the hell have they been doing with All. That. Money.?
I did not call in. I've spent the five days from the time I got the email to the day of the teleconference wondering what on earth I could say that would respond specifically to their five criteria. But Jennie Spotilla articulated what I haven't been able to, namely, that the five criteria were irrelevant and what needed to be addressed was what was missing from their list of priorities. Of course, part of the insidiousness of this disease, at least in my case, is that it slows the time it takes for me to process information substantially. The short-term memory problems and inability to concentrate don't help.
But members of the CFIDS Association were not the only "stakeholders" who phoned in, as this wonderful summary from Hillary Johnson, who wrote the book, Osler's Web, chronicling the history of ME/CFS, so poignantly details.
As it turned out, the all-afternoon call-in fest was remarkable in myriad ways. I hadn’t expected to be so profoundly affected by it.
In my long memory, it was the first time I have seen agency staff leave themselves quite so vulnerable. There was no filter between government staff and the public, some members of whom arrived in person to participate in the four hour session in Auditorium B2 of the CDC’s Global Communications Center. One couple flew all the way from Texas to make their brief comments, for instance; the wife, ill, the husband, healthy.
I cannot possibly do justice to her review so just go, go read. And grab a tissue on your way over because you'll need it.
In another plug for Twitter, Marly Silverman of P.A.N.D.O.R.A tweeted the conference so that those of us who were, say, not awake for the conference (like me) or otherwise engaged could read her real-time description of what was going on. You can go to her Twitter profile and read her tweets.
I don't know if the serious verbal lashing the CDC received on Monday will do anything to change its approach to ME/CFS. And the passion unleashed in the teleconference would be great to also unleash upon the National Institute for Health where the big research bucks are but CFS is among in the five least-funded diseases. But just maybe this will be a chance for ME/CFS patients (myself included) to push through the apathy that has befallen our community in recent years and fight for the research and treatment we so desperately need.
Two things you can do with little effort:
- Sign Tom Kindlon's petition asking the CDC to dump its ridiculous "Emperical Definition." The only tiny bit of criticism I have with regard to the petition is that I would like such a petition to ask specifically that the Canadian Consensus Document replace the fairly universally despised Emerical Definition. But dumping the ED is imparitive as it's a contagion that could potentially infect more ME/CFS research. Think of it as the research equivelent of the swine flu...
- Sign up for the Blue Ribbon campaign to raise awareness of ME/CFS, particularly on May 12, ME/CFS Awareness Day.
