Andrew
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I sent the following question with comments to the IOM. I was going to wait for an answer before posting this. But the automated response said they do not reply to every email. So I'm posting now.
I was just reading the statement of work for the IOM contract regarding ME/CFS. I see no requirement that any definition you come up with be validated with real world testing. For example, the International Consensus Criteria (ICC) is currently being tested against real patients by a qualified researcher. This is to see if this criteria can actually differentiate an ME/CFS patient from a similar illness. And as this process continues, any necessary adjustments can be made before putting it into use. This is why most experts are recommending the older consensus called the Canadian Consensus Criteria (CCC), and are holding off on using their newer ICC.
Does your contract cover such validation? If not, will your recommendations include that a new consensus (if you develop one) should not be put into use unless is put through multi-site field testing and found to perform better than the CCC/ICC.
Keep in mind that an illness is defined by the manifestations of the illness in the patient population, not be the illness name. Many of the sick people who were first assigned the unfortunate term "Chronic Fatigue Syndrome" are still alive and still suffering. The only criteria that comes close to differentiating this group are the CCC/ICC. Everything else is a dilution that was driven, in part, by the illness name. Unless your definition can differentiate these people or equivalent people in real world testing, it is less qualified for use than the CCC.