The patient community and the CFIDs Association of America showed up for the comment session on the CDC’s CFS research effort but the research community didn’t. Except for Staci Stevens and Dr. Klimas and a brief statement on behalf of the IACFS/ME no other researchers spoke.
Time for the IACFS/ME To Step Up – The review process has highlighted some substantial holes in the ME/CFS community’s response to events. The CFIDS Association of America, with its report on the CDC, had its act together but thus far, our professional research organization – the organization that theoretically should be most embedded in this review process, the IACFS/ME, has almost completely missed the ball. Unfortunately they have missed the chance to influence the CDC’s research effort at the ground level. What could they have done?
As the leader of the ME/CFS research community the IACFS/ME could have demanded a seat at the table of the external review. They could have had their representative pose a series of question to the CDC and used those answers to help shape their recommendations for the CDC’s five year plan. Coming from an Association that represents researchers around the globe this could have an enormous impact.
The IACFS/ME could have followed the CFIDS Association of America’s lead and presented their analysis of the CDC research effort first to the external reviewers prior to their trip to the CDC and to the CDC itself.
The IACFS/ME’s unwillingness to get involved means our only professional research organization has had no input into the fundamentals of the strategic plan the CDC is developing for CFS. What has this cost the ME/CFS community?
It has allowed the external review to achieve greater prominence that it should’ve. The external review done by Dr. Komaroff, Dr. Lange and Dr. White has turned out to be a very big deal indeed with the CDC doing an abrupt about face on possibility of fundamental change once the report was in. The report was mentioned frequently by CDC staff during the meeting and appears to have played a substantial role in the CDC’s five year plan.
But not everyone was satisfied by that report; it ignored the CFIDS Association’s charges of mismanagement, it applauded the creation of the controversial Empirical Definition, it failed to assess the CDC program within the broad context of the research field’s goals and it anointed the CDC as the leader in physician education – despite a newer, better and more popular program developed by the CAA. While it did highlight some shortcomings and provide some helpful suggestions (including these review sessions!) it was hardly comprehensive. In fact CDC personnel at the event complimented the external reviewers for their very quick turn-around time on their report (‘just a week or so”) - which was exactly what the report looked like.
As Dr. Klimas noted in her comments the CDC program matters; it uses half the funds spent on ME/CFS in the U.S. every year and is the face of chronic fatigue syndrome for much of the world. But the IACFS/ME has the potential to matter as well. Simply by virtue of its large professional membership any stand the IACFS/ME takes on a research issue cannot be ignored. The CFIDS Association of America, on the other hand, despite the presence of Dr. Vernon, is primarily a patient support organization and can thus can – and recently apparently was – ignored on research issues.
Getting a consensus on any matter regarding ME/CFS is difficult yet if the IACFS/ME is going to make the difference it can in this disease it needs to take a stand on issues facing the research community. This is the perfect opportunity to begin to do so. With the real Five Year Plan yet to come there is still ample time for this organization to step up to the plate and give a detailed critique of the program’s failings and strengths – and influence the program’s direction.
The IACFS/ME recently asked ME/CFS patients to donate a million dollars to their research effort. But are they are worthy of that kind of money? Are they a group of disjointed scientists largely sitting on the sidelines or are they an organization that’s strong enough to make a difference in how this field evolves? Can they take a leadership role in the issues that concern them? If IACFS/ME can’t get its ducks in a row when the biggest research program on the planet is undergoing public review one has to ask when will it?
Dr. Friedberg has started off well as the President of the IACFS/ME with his shot across the bow of the CDC for their poor effort (thus far) at the review process but this, hopefully, will be just the beginning.