[Disclaimer: I am not in very good shape and I do not, at the moment, have the stamina some other advocates do. But the recent developments are so monumental that I felt I nevertheless should give my impressions as best as I currently can.]
“Perfect is the Enemy of Good.”—Voltaire
In my last blog post about the CAA putting pressure on the 35 ME experts who, on September 23, 2013, signed an open letter to Secretary Sebelius urging her to adopt the CCC, I predicted that the CAA’s strategy was to get at least one signatory to change his or her mind and to get everything to unravel from there. Because if just one person falters, the unity of the expert community would be broken. Sadly, we just found out that that tactic worked. Dr. Bateman withdrew her support of the open letter this morning. Do I know for sure whether Dr. Batemen changed her mind because of CAA prodding? Of course not. But if the CAA was working in the interest of patients, it would have encouraged the experts to stick to their guns instead of implying that they might want to change their minds.
Dr. Bateman is now “support[ing] the IOM contract instead of advocating that [they] adopt the CFS Canadian Criteria as [their] official clinical definition.” I have to say this is hugely disappointing given that the expert letter “strongly urge[d] [Secretary Sebelius] to abandon efforts to reach out to groups such as the Institute of Medicine (IOM).” So, one could ask oneself why Dr. Bateman signed the letter in the first place then, especially since she is now, in essence, saying that the CCC are not good enough and that “we can do better.” So, basically, she changed her opinion on the entire substance of the letter by 180 degrees in one week. Her decision severely undermines any chance of HHS’s adoption of the CCC without attaching any strings to her support of the IOM contract, like a commitment by HHS to only have ME experts on the committee and nobody from the psych lobby.
I do not mean to call out Dr. Bateman because I have some kind of underlying issue with her. Quite the opposite. I respect Dr. Bateman very much. I even like her. She was there for us all the way in December of last year to testify at the Ampligen advisory committee meeting. I am very sorry about her tragic loss to this terrible illness and I do not believe that she has any agenda here. But that doesn’t make her move any less disappointing or painful or harmful. I would like to acknowledge, and express my gratitude for, Dr. Bateman’s substantial contributions to, and sacrifices for, the ME community in the past. I believe that she is actually coming from a good place trying to effect positive change. Nevertheless, I believe she is misguided and unfortunately, her decision changed the political landscape dramatically, for the worse for patients.
Naïveté about politics will never cease to amaze me. It’s common and it’s deadly. I have seen the we-can-do-better-than-the-CCC argument floating around the Internet. But I am afraid that option is not on the table here. Instead, we have exactly two options:
1. We will convince HHS to adopt the CCC ME disease definition.
2. We will get an ME disease definition by the IOM that revolves around “chronic fatigue” and that will make a mess of things for decades to come.
Are the CCC perfect? No, but perfect is not an option presented to us. The experts already said that the disease definition will continue to be updated over time, like it is with other illnesses. And clearly, the CCC are a much better starting point than “chronic fatigue,” which is what we’ll get from the IOM.
Does anybody really think that the IOM contract is an opportunity to create “evidence based [sic], broadly accepted clinical and research tools, [sic] that can accurately include or identify all subsets of the broad heterogeneous group that present under any case definition of CFS” using biomarkers, as Dr. Bateman suggests? Granted, that would be ideal. But given the history this patient group has with various government agencies, committees, etc., it must be abundantly clear to everybody who has been around this illness and its politics for a while that our best interest is not on the officials’ agenda. This is their opportunity to burry us, like they did with Gulf War Illness (GWI).
There have been two IOM contracts for GWI, the second one currently under way to create a disease definition. Suzanne Vernon of the CAA and Fred Friedberg of the IACFS/ME (both organization are represented on CFSAC) are on the IOM committee for GWI. Note that neither are experts on GWI. There is an unconfirmed rumor that Suzanne Vernon has a relative with GWI and it is conceivable that she has been and will be testifying on the committee as a caregiver. But given that there are 500,000 patients with GWI, the odds that she just happened to be picked as a caregiver “expert” are astronomical, especially since there are said to be plans for her to also be on the IOM committee to define “ME/CFS.”
The first IOM contract addressed treatment for GWI. The committee determined that the best clinical practices for GWI are graded-exercise therapy (GET), cognitive-behavioral therapy (CBT) and antidepressants. The committee’s report of January 2013 also mentioned those same clinical practices for “Chronic Fatigue Syndrome.” The report furthermore introduced the name “chronic multi-system illness (CMI)” to be used instead of GWI. An incredible slap in the face of the men and women who have given up their health and often their families, homes, friends and ability to earn a livelihood, all for this country.
Does any of this sound familiar to anybody? If the government has no problem throwing veterans under the bus, why would they hesitate to do the same or worse to us, given the huge nuisance we are to them. Make no mistake: The IOM contract has the overwhelming potential of leaving us worse off than Fukuda ever did! Let’s not sacrifice “much better” for an illusory “perfect!”
[I asked Dr. Bateman in an email whether she wished to try to change my assessment of events or whether she wanted to comment on my post. She has not replied.]