“If patient advocates sit on the committee, they will be played. The government will then be able to say the patient sector was represented in the committee’s actions and the outcome of the work.”—John Herd, veteran patient advocate, October 10, 2013
The patient community is frustrated by persistent statements of a small minority of patients/advocates to the effect that the IOM contract is going to become reality no matter what we do. We are being sold the illusion that nothing will make a difference. Might as well just give up, folks. Really? Not! Not at all, in fact. It’s a dangerous, but potentially effective technique: You just keep repeating a statement over and over and eventually it will stick. It’s effective, that’s for sure. Just look at the number of people in this country who believe that Obama was born in Kenya or that Obamacare will create death panels. There! Very effective to repeat these falsehoods. The danger in the IOM situation lies in the potential to demoralize folks when what we need is to fight more than ever.
Conceding that the IOM study will proceed would be to negotiate like Obama used to do until very recently. And how well has that worked for him?! It would mean giving up our position entirely to be left with no leverage at all and without having received any concessions from the government, e.g., about the IOM committee members, the rigor of the study, avoiding a GWI-like disaster, etc. To remind everybody, the GWI IOM 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.”
If something is morally wrong, one needs, as a matter of principal, to oppose it even if the chances of changing it are marginal (and I am not saying they are marginal here). Of course, one would go to plan B (trying to have a say about committee members to be appointed, trying to affect the outcome of the study, etc.) if plan A (opposing the study tooth and nail) falls through. We are not faced with a choice between plan A or plan B right now. Going with plan A does not, by any means, foreclose plan B here.
What do we have to lose by opposing the IOM contract unflinchingly? Not a thing. In fact, we may succeed and the contract may get rescinded! After all, Secretary Sebelius has not even responded to the open expert letter yet. And if you think about it, proceeding with the contract after our experts recommended abandoning it, really is not a reasonable route to take for her given that about $1 million of tax-payer money would be wasted when we’ve been told time and time again that there is no money for bio-medical research into the disease and that we are in the middle of a government shutdown and sequester. But since the government is not known to make rational or humane decisions when it comes to ME, it is indeed possible that HHS will decide to just push the IOM study through. So, let’s assume for a minute that that will happen. Surrendering in this battle still would make absolutely no sense. If we roll over easily now, it will signal that the IOM, for HHS, can throw us under the bus like they did with GWI patients. Our vets are a group that basically has the entire country’s support. Most people, even those opposed to the wars, want to see our vets treated decently. And yet, GWI patients got a shockingly raw deal from the IOM. ME patients are very likely to be treated even more abysmally.
The stronger our opposition now, the more we will show that we are not going to take any hack job lying down and that the IOM will not get away with a GWI-type outcome. Putting up a fight now will put us in a stronger position in the future. We need to fight every step of the way. Fighting costs us nothing. In fact it gains us strength and bargaining power down the road. Make no mistake: Fighting now WILL affect the outcome either way. As a matter of integrity and as a matter of survival, we need to take a principled approach. And that means not accepting the IOM contract as a done deal.
Jennie Spotila recently “confirm[ed] through multiple sources that the IOM has reached out to multiple ME/CFS organizations for nominations to the clinical case definition committee” and that those nominations were due on October 11, 2013. There have been rumors that certain patient organizations or its members contacted some experts as well as a few advocates and patients for their input regarding those nominations. Could it be that those rumors are indeed true? If so, this would certainly seem like a major betrayal given the clearly stated desire of the vast majority of the experts, patients and advocates to abandon the IOM efforts and to proceed with the CCC, as suggested by the experts. I guess we will probably find out in the near future who was involved in soliciting nominations for the IOM committee. I just hope that patients will not have reason to be shocked and disappointed to learn that their favorite ME organization or advocate has worked behind their backs against their stated and obvious interests. I really do.
And what’s with this lightning speed in obtaining nominations, less than three weeks after the IOM contract was announced on September 23, 2013? Nothing the government does, even when outsourced, like here to the IOM, ever happens fast. Especially in times of a government shutdown. Call me paranoid, but this really smells like somebody is determined to push this through as quickly as humanly possible in light of the overwhelming experts’, patients’ and advocates’ opposition before any real counter movement can be formed. And if that is the case, it begs the questions why. And what a revolting approach to exploit the fact that we are too sick to react quickly.
Jennie also lets us know that “the public will be given twenty days to comment on the provisional appointment list, although [she] do[es] not know when that list will be posted.” So, we will get a chance for input after the fact. How very generous! Is it just me or does anybody else have any questions about why the public was not even informed that this was going on? There has been zero transparency with respect to the nomination process or even just the fact that nominations were being sought. The latter did leak, but we did not get any details and definitely got nothing from any official source. Curiously, we were given this information through Jennie on the day of the deadline, October 11, 2013. Why all this effort to keep the main stakeholders—the patients—in the dark?
I guess we shouldn’t be too surprised given how the government has gone about the whole IOM situation from the start. Even Jennie admits, “I am insulted by how [the IOM study] was created in secret and concealed not just from advocates, but from all but one voting member of the CFSAC. The way HHS has treated the advocacy community, and failed to show the 35 experts even the basic courtesy of an acknowledgement of their letter, is simply outrageous.” You’ve got to give the HHS credit for one thing: They are consistent in their complete lack of respect for patients and experts. The disdain they have for us is clearly palpable.
Now about Jennie’s take on the matter. She says, “if the canoe is pointed at our goal of the right clinical definition for ME/CFS, how do we coordinate the paddling?” Clearly, if the IOM contract stays in place, the canoe is headed for the Niagara Falls. Grabbing a paddle by getting involved in the IOM process is only going to lend credibility to a sham exercise designed to burry ME even further for decades to come. By paddling, we would give the impression that we had a chance of avoiding the drop of 173 feet and being annihilated. The IOM canoe is doomed and that’s why patients shouldn’t and aren’t getting in.
Ok, so the government has never rescinded an IOM contract in the past. “We’ve always done it this way” does not get very close to convincing me. Has there ever been a situation where about $1 million dollars are going to be wasted on an outcome that has the overwhelming potential of leaving patients much worse off? I don’t know the answer for sure, but I would bet some serious money on “no.” And to expect the patient community to be understanding of the fact that the government puts its relationship with the National Academies above the wellbeing of patients who have been, by HHS, disenfranchised, ridiculed, neglected and victimized for decades is peculiar. How about the “politically loaded action” of awarding an expensive contract that the patient community clearly doesn’t want nor need? There seems to be a total acceptance by a few of the fact that the patients are ALWAYS the last group whose interest is being taken into account. Why is that not objectionable to everybody?
According to one of Jennie’s “highly placed source at HHS, … the government will not accept a definition without their own thorough assessment, if not influence [because] HHS will want to get its hands on any definition before accepting it.” This is exactly what’s going on, but why be so understanding about it? Given that HHS has no expertise in the ME area, it is outrageous that it wants to influence the disease definition and “get it’s hands” on it. Plus, this is completely inconsistent with Secretary Sebelius’s letting us know, through CFASC DFO Lee, that the definition must come from the medical community, not HHS. I guess Sebelius didn’t really mean it then.
I am glad that Jennie doesn’t just want to throw in the towel and stay out of it altogether. I agree with her on this point. Getting involved is a matter of conscience. But even Jennie does not “have confidence that [she] can have meaningful influence over the panel selection or how it does its work.” To be really clear, unlike Jennie, I do believe that my choice not to grab a paddle or even get into the IOM canoe—by fighting the IOM process altogether instead of merely trying to influence the IOM process—is better. I do believe that opposing the IOM contract and lobbying for the acceptance of the Canadian Consensus Criteria (CCC) is morally superior to giving up and putting our fate into the hands of the IOM. And I do believe that there is absolutely a real chance of stopping the IOM study from going forward. If I didn’t, I wouldn’t have run my health into the ground over the last two weeks trying to stop the IOM contract. If I felt either choice—to fight proceeding with the IOM study or merely to try and influence its outcome—were equally good or bad, I would have just enjoyed my family and my effective medical treatment.
PS: After getting all this this out of my system, I feel the need to say the following. I do not enjoy disagreeing with people. I struggled with the decision to explain why, in my opinion, Dr. Bateman’s change of position regarding the IOM contract vs. the adoption of the CCC, as recommended by our experts, was misguided. It was hard for me because of her many contributions and her dedication to the patients over many years. But her changing teams after being prompted by Suzanne Vernon was very damaging to the patient community and, at the end of the day, if I want to be an effective advocate with my integrity intact, I need to make it about the issues and not about the people involved.
I do not have too many sleepless nights over calling out officials, government or private. They get paid for what they do and if it’s against the interests of the patient community, which it typically is with ME, they need to hear about it. Suzanne Vernon’s actions and positions are so very objectionable to me that speaking my mind about them does not cause me any distress whatsoever. The fact that I have no ambitions of cozying up to people who are perceived, sometimes just by themselves, as influential is helpful.
Other patients are a whole different story for me though. Stress is so very bad for us and I make it a point to try and be gentle with fellow patients. However, what I said about Dr. Bateman holds true here as well. Trying to get along cannot trump discussing the issues or else there is no point to any of it. It is in this spirit that I wrote this. I hope both Jennie—whose intellect and writing skills I respect very much—and other patients will understand that this is in no way personal, even though our opinions on this particular issue couldn’t be more conflicting.