Based on context and substance, we have to assume that the latest blog entry posted on the CFIDS Association of America’s (CAA) website was written by Suzanne Vernon although it was not signed and the author wasn’t identified.
Suzanne Vernon is assuring us that she is not benefitting financially from being on an IOM committee. That is one of the most disingenuous statements I could imagine on the subject. There are many ways to benefit that are not financial. The currency here may not be money in any direct way (and I believe that to be true). It is power. It is about being connected. It is about building a resume, credentials, a career. All of those have the strong potential to indirectly benefit the CAA and/or Suzanne Vernon financially in the future, even if it will just be a matter of the CAA still being in existence, which looks more and more questionable.
As I pointed out in my prior blog post, Suzanne Vernon—who spent a majority of her career at the CDC where her “CFS” research with Bill Reeves was mainly into the psycho-social aspects of the disease—is on the NIH’s Special Emphasis Panel (SEP), a committee that reviews grant applications for “ME/CFS.” That position alone bestows an incredible amount of influence over ME research and, thus, politics and treatment. Let’s remember that at least some of the 35 ME experts who signed the open letter to Secretary Sebelius felt they were being pressured by Suzanne Vernon—the scientific director of the CAA, a member of the SEP and a member of the IOM committee—into changing their position. It is simply not believable that Suzanne Vernon does not view her being on the IOM panel as a benefit to her and/or the CAA because it gives her and the organization, without a doubt, more power in times of very little patient support and dwindling staff and contributions.
This is a woman who accepted compensation of about $138,000 per year in the last two years from a non-profit whose revenue was only about $1.2 million in 2011 and about $1.1 million in 2012 and that received a two-star rating due its financials. Kim McCleary was paid around $167,000 per year for those two years. The total cost to the non-profit is even higher than that because of payroll taxes and state disability and unemployment taxes, which also come out of the organization’s pocket book. So, just for the services of Suzanne Vernon and Kim McCleary in 2012 alone, the CAA paid about $305,000+ while having an income of under $1.1 million. In other words, this non-profit organization, which claims to aim for advancements in a disease that is ridiculously underfunded, spent more than a than a quarter of its revenue on its two key employees, one of them being Suzanne Vernon. So, forgive me if I don’t believe that Suzanne Vernon is serving on the IOM committee out of the goodness of her heart.
Now, about that pressure signatories reportedly felt. Suzanne Vernon had this to say on the subject: “There is speculation that I asked them to rescind their signature. I did not ask anyone to rescind their signature or change their mind.” She said she was merely asking if the signatories still agreed with their expressed position. Again, this strikes me as insincere at best. Given that the email was triggered by merely one signatory changing her position (and not even officially withdrawing her signature), it would have made sense to ask Secretary Sebelius if she still wants to go forward with the IOM efforts since the majority of experts were against it and given the great tax-payer expense involved, but not to ask the experts if they wished to change their minds.
The email that Suzanne Vernon sent to the signatories is analogous to the following hypothetical: Let’s say a Democratic Congressman has stated that he or she is not going to vote party line and Nancy Pelosi sends an email to that Congressman asking if he or she still stands by his or her position: “If you have any misgivings about [your previously stated position]”, or feel that the party line should prevail, “[I] need to hear from you.” Seriously, could there be any doubt about the fact that this is not just a friendly “hello, just checking in,” but ever-so-slight pressure and that the support of the Democratic Party during the next primaries was seriously in jeopardy? I think not. So, how about when a member of the panel that will decide whether your next grant application will get approved (SEP) asked you whether you have changed your mind on a very contentious issue, a question that only makes sense as a suggestion that you do change your mind? No pressure to withdraw your signature? Really?
We still haven’t heard why the CAA is in favor of the IOM contract when pretty much all of the respected experts are not and when the patients have made it abundantly clear that they do not want the IOM contract to go forward. If an organization is so removed in its position from that of the group of people it purports to represent, is it too much to ask for a genuine explanation?
Still no word of comfort on why we should be confident that the “ME/CFS” IOM committee will do a better job than the GWI IOM committee. GWI patients are outraged by the results of the first IOM contract on treatment. They were thrown under the bus by the committee. It seems that the CAA’s PR tactic continues to be to acknowledge the patients’ fears without addressing them. Vernon went from “while we understand ….” to “we believe it is in the patients [sic] best interest to continue …” She then states the following: “We must have the cooperation and involvement of the various federal agencies to increase research funding and achieve real progress.” This makes no sense for two reasons: 1. It certainly was not progress, but a huge step back, to involve the IOM in the case of GWI. 2. Why and how will an IOM disease definition generate more federal funding?
Seriously, a member of the GWI IOM committee, a panel that has done an abysmal job for GWI patients, is defending the need for an IOM committee for “ME/CFS!” This is, on its face, outlandish. It’s as if the fox is pretending that it wants only the best for the hens. I find it highly improper that, Suzanne Vernon, as a member of the IOM committee, would even get involved in that discussion. It is a conflict of interest.
And finally the “explanation” for why a research organization is interested in the disease definition: ”It is precisely because we are focused on research that case definition is important to us. … The diagnostic criteria is essential to advance research because it provides us with the disease-defining concepts – the core signs and symptoms – needed to identify and validate biomarkers and to provide evidence of treatment benefit.” This talking point was entirely predictable. At first glance this even makes sense, until you remember the GWI IOM disaster. The GWI committee changed the name “Gulf War Illness” to the unrecognizable and offensive name “Chronic Multi-Symptom Illness,” a name that could not be less descriptive or more all-inclusive. The “treatments” the IOM committee report recommended for GWI—a physical illness—are antidepressants, Cognitive-Behavioral Therapy and Graded-Exercise Therapy. The report also suggested the same clinical interventions for “ME/CFS.” It is being reported by GWI researchers that vets are turned away at the VA now due to the changed name and broadened disease definition. Broadening the already overly inclusive definition of “ME/CFS”—something we can be sure will happen if the IOM is involved—will do the opposite of what Vernon claims the result of the IOM contract will be. It will make research less scientific and more meaningless.
Let’s keep in mind that the IOM contract will cost about $1 million of scarce government funding, when the experts have already settled on a very effective definition. Does anybody have confidence that this $1 million dollar contract will produce a better definition or advance the interests of the ME community more than spending the money on bio-medical research? Or is this just job security for a few folks?