Posted October 3, 2013
“A “spin room” …. is an area in which reporters can speak with debate participants and/or their representatives after a debate. The name refers to the fact that the participants will attempt to “spin” or influence the perception of the debate among the assembled reporters.”—Wikipedia
Today, the CFIDS Association of America (CAA) released a statement about its position on the HHS IOM contract. I know people will tell me (again) to stop being surprised. But I do like to give folks the benefit of the doubt and I do tend to be taken aback when something does not add up. And things certainly do not add up here.
First of all, as an organization that announced 2.5 years ago to be “transforming from a patient support and advocacy organization to one laser-focused on stimulating and supporting research,” it sure is knee-deep (emails, phone calls, blog post, Facebook posts) in this advocacy issue, as it has been with others since its big transformation announcement.
But what mainly piques my interest is the fact that the CAA quite obviously is assuming that the IOM contract will go forward despite the fact that the open expert letter is still in place. It is true that Dr. Bateman has, in her statement of yesterday, changed her support for the adoption of the CCC and her opposition to the IOM contract. But apparently, none of the other 34 signatories of the expert letter have followed suit. The letter is still in place and all the other experts are presumably still very much standing by it. One person changed her mind. One! It seems to be an overreaction of the CAA to go from that to “ok, we are done here.” A reaction that is not at all in the patients’ best interest!
Moreover, we have not heard from Secretary Sebelius yet in response to the open expert letter. Why assume that she will not be convinced by the overwhelmingly persuasive argument that it’s unreasonable to spend—in the case of a grossly underfunded disease—around $1 million on an IOM contract (that’s usually a ballpark estimate for IOM contracts) for the creation of a definition by non-experts for which there is no need since we have the expert-endorsed CCC readily available? The CAA is jumping the gun here and one can’t help but wonder if this is an attempt to demoralize patients and advocates and cause them to drop their support of their experts. If the CAA just repeats often enough that the IOM contract is a done deal, it will become a self-fulfilling prophecy because opposition will dwindle.
My plea to patients and advocates out there: Don’t fall for it! The open expert letter is the strongest tool we’ve had in years, maybe ever. Finally, our experts have come together and a majority agrees that the CCC should be adopted (and updated from time to time based on the latest findings) and that the IOM contract should be abandoned. Our experts need our support and gratitude now more than ever. Starting to think about which patient representative should be on the IOM committee is dangerous and exactly what the CAA wants us to do. It’s counter-productive. Instead, it is in our best interest that there be no IOM committee for the creation of a disease definition. Our energy needs to go into making sure of that.
I questioned the CCA’s position on its Facebook page hours ago, but the CAA has not replied. In fact, my comment seems to be no longer on the page. Granted, with the slew of Facebook issues, this could be merely a technical or temporary problem. I don’t know.
The CAA expressed understanding today of patients’ and advocates’ opposition to the IOM contract. However, it does not address the most obvious reason for this opposition, the terribly botched work of the Gulf War Illness (GWI) IOM committee on treatment, which turned a perfectly fine name, Gulf War Illness, into a completely offensive, non-descript, meaningless and, thus, harmful name, chronic multi-symptom illness (CMI), for which it recommended graded-exercise therapy, cognitive-behavioral therapy and antidepressants and which mentioned the same “treatments” for “ME/CFS.” Both Suzanne Vernon, Scientific Director of the CAA, and Fred Friedberg, President of the IACFS/ME, are on the IOM committee for the disease definition of what’s tragically now called CMI. Neither Vernon nor Friedberg are experts on the disease. Both are on the NIH Special Emphasis Panel (SEP) that reviews grant applications for “ME/CFS,” an extremely powerful position to hold. Fred Friedberg is a psychologist who has been receiving signifiant amounts of money from various NIH institutes for the study of coping techniques for “ME/CFS”:*
Fiscal year 2008: $230,603 from NINR, ”Fatigue Self Management in Primary Care, Efficacy, Credibility and Economics,” project #: 1R01NR010229-01A1, State University of New York Stony Brook
Fiscal year 2009: $230,603 from NINR, “Fatigue Self Management in Primary Care, Efficacy, Credibility and Economics,” project #: 5R01NR010229-02, State University of New York Stony Brook
Fiscal year 2010: $228,297 from NINR, “Fatigue Self Management in Primary Care, Efficacy, Credibility and Economics,” project #: 5R01NR010229-03, State University of New York Stony Brook
Fiscal year 2011: $259,641 from NINR, “Efficacy of Home-Based Self-Management for Chronic Fatigue,” project #: 2R42NR010496-02, Warren Stress Management”
Fiscal year 2011: $66,864 from NICHD, “Efficacy of Home-Based Self-Management of Chronic Fatigue, ” project#: 2R42NR010496-02, Warren Stress Management
Fiscal years 2012/2013: I am unaware of the amount of funds Dr. Friedberg may have received for fiscal years 2012 and 2013.
I find it astounding that our government who basically has no money to award to our researchers for bio-medical research has spent these incredible amounts on the study of coping mechanisms, an area that is pretty much “researched out” when what we desperately need is bio-medical research. Can you imagine what Dr. Peterson, e.g., would have been able to do with these kinds of grants researching pathogens, NK cells or cytokines?!
Suzanne Vernon is reportedly about to be appointed to the IOM committee for the “ME/CFS” disease definition, which, if true, creates a conflict of interest for the CAA to have an official position on the issue of the IOM contract at all. Yet, this is also not addressed by today’s CAA statement. If it’s not true, why not say so? I’d love to be wrong on this. If it’s true, why not comment on why, in the CAA’s opinion, this does not create such a conflict? But most importantly, why the quest for so much power over the fate of ME patients in the hands of just two individuals, Suzanne Vernon and Fred Friedberg? With such concentration of power without any checks and balances, why would patients possibly be concerned? Without addressing any substantive concerns, the CAA’s statement is meaningless. It’s spin.
The CAA also, after a lot of pressure from the patient community, made available the letter it sent to the experts. According to the CAA letter, Suzanne Vernon spoke to Dr. Bateman and Dr. Bateman explained her reasoning for changing her position and suggested that Suzanne Vernon contact the other signatories. Curiously (as noted by another alert patient), the copy of the posted letter was addressed to “Cindy.” No other Cindy or Lucinda or Cynthia signed the letter. It seems implausible that Dr. Bateman would have been sent this letter given that it referred to her own position. Just saying.
