Today, the IOM published the provisional IOM committee appointments for the institution’s ME/CFS “study.” I have only taken a brief look at the list of nominees. Others are in the process of “vetting” the nominees and researching their background. I thought about this long and hard and have come to the conclusion that providing input on the committee members will accomplish little and likely legitimize this rigged game. The fact that the number of nominees who are not experts in the disease (8) exceeds the number of experts (7) quite clearly exposes HHS’s intent in burying our patient population for good with an unscientific definition that will set us back for decades and in producing a result like the IOM delivered in the case of Gulf War Illness. The government quite obviously does not want this disease defined correctly. Remember when Dr. Unger said at the last CFSAC meeting that the CCC are too complex for physicians? I am sure brain surgery e.g., is very complex and only a few physicians are qualified to perform it. Does that mean that we shouldn’t do it at all? Or does that mean that the brain-surgery experts should perform the surgeries and educate the non-experts on what they need to know? The difference in approach here is that people who are required to have brain surgery are considered to be sick. We are just considered to be lazies and crazies.
I mean no offense to some of our more esteemed experts who were nominated, but the concept of convening a committee with any non-experts, let alone with a majority of non-experts, is nothing short of ludicrous. It’s insanity that is not even in the realm of reasonableness. The rationale reportedly given by the IOM, i.e., that the definition “will be used by physicians/clinicians with and without experience in ME/CFS, so the participation of committee members from both perspectives is very important” is mind-boggling. In no other area of any significance or in any complicated field would the definition of a crucial issue, such as a disease definition, be turned over to non-experts. It’s unthinkable.
This is like saying that we should have law students on the U.S. Supreme Court because they will one day be required to interpret Supreme Court decisions. Hey, why not let dermatologists decide what the best way to perform open-heart surgery is? After all, they may have to deal with the cosmetic aspect of the scar left by the surgery at some point.
It might make sense—after completing a first draft of a definition for ME/CFS—to have a session with non-experts, such as internists, family doctors and pediatricians to let them ask questions and give input and based on that to refine the definition. That seems sensible. But the question of educating non-experts on the definition is a separate one and letting know-nothings—those who have no prior experience with this extremely complex disease, maybe the most complex disease of our times—determine how it will be defined is indefensible.
The idea that the IOM committee for ME/CFS will include a majority of non-experts reminds me of comments made by Republican Senator Roman Hruska of Nebraska about Nixon’s nomination of G. Harold Carswell to the U.S. Supreme Court. In response to criticisms of Carswell as being a mediocre judge (58% of his decisions as a federal district court judge having been reversed on appeal), Hruska said: “Even if he was mediocre, there are a lot of mediocre judges, people and lawyers. They are entitled to a little representation aren’t they, and a little chance? We can’t have all Brandeises, Frankfurters and Cardozos.” Carswell was rejected by the Senate. Harry Blackmun was ultimately appointed and later wrote the majority opinion in Roe v. Wade.
As if the appointment of non-experts was not bad enough, one of the nominees is a mental-health expert. I thought even the government had moved past calling this disease psychological. At least it pays lip service to that effect. The FDA classified ME/CFS in the group of serious or life-threatening diseases. This IOM panel is not a committee on coping mechanisms for the disease. Talk therapy can be helpful for ME patients, as it could be beneficial to any patient with a serious chronic disease. But why in the world would a professor of psychology who researches mental-health services be involved in defining the disease? And what makes her think that she is up to the huge responsibility she is handed for very suspicious reasons? Why is she not wondering what she could possibly contribute?
Most of the appointments are completely outrageous and yet some patients are almost relieved because it “could have been worse,” because we all expected the government to stack the deck against us with non-experts. Are we so used to being treated as sub-humans that we rejoice over any crumbs that are being thrown to us, no matter how rotten they are? This reminds me of the ludicrousy of the East German government’s propaganda. Everybody was expecting it and we all figured that there was nothing we could do about it anyway.
Well, we can do something about this and that is unconditional resistance. Let’s not lend credibility to this kangaroo court by deluding ourselves into thinking that we have influence over the outcome of the IOM “study” by giving input on the appointees. The only way we will survive this rigged game is by continuing to demand the cancellation of the IOM contract altogether. Compromising means surrendering.