Hi Mark. Pandora created a survey to try to answer the question that you also are posing, and I wrote the following comments to them. Perhaps they will be helpful to you. Good luck.
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I don't feel like the survey allows me to express my view on the topics that it discusses, and so I am going to write some comments here.
As the "CFS" definition stands now, it is as if the CDC still recognized a disease that was called "Memory Problems," encompassing people with severe Alzheimer's, early-stage Alzheimer's, other types of dementia (such as what people experience as a result of strokes), and mild idiopathic issues (such as people not remembering where they put their car keys).
If all previous research had been done on all of these people, with no research done on just the people with severe Alzheimer's, then there would be no way to separate out who should be classified together and who should not. It would be one big mess.
If the reason that people are interested in "Memory Problems" at all is because they see people with severe Alzheimer's and don't want to get it, then the only way to sort out the mess is to study those people who are severely ill with the disease (the first group), to determine whether biomarkers or other testing can be found to correctly identify not only the people who already are severely ill with those particular symptoms but also people who are at an earlier/milder stage of the same illness.
Indeed, this is how Alzheimer's disease was researched. And it is why you can go to the doctor even with very mild memory problems and find out whether or not you actually do have Alzheimer's: because the research that was done on severely ill patients allowed this to happen.
As long as the government is still using a broad research definition for ME/CFS, that is never going to happen for this disease. It's going to remain a mess.
We need to be looking at the severely ill patients, to learn as much as we can about them (just as research was done on the severely ill patients in Alzheimer's, to find out as much as possible about them). Only by doing that will we learn who else is "in" (should be properly considered to have the same disease) and who else is "out" (should be properly considered to have a different disease).
Obviously, IOM is supposed to be creating a clinical definition, and it is very difficult to create a good clinical definition when the understanding of the illness has been hampered so much by research of such poorly defined populations. So there really is not enough information to know what the right answers to any of your questions should be. It is all based on speculation and opinion, rather than medical science. And since I don't know what the proper answers are, I cannot bring myself to complete the survey. Since the IOM panel members will not know what the answers are either, they should not be creating a definition based on that non-knowledge.
As many of us (197 in the last letter; 50 experts and 171 advocates in previous letters; more than 3000 people signing a petition) have stated repeatedly, the solution to this problem is for the IOM to dismantle its efforts to adopt a new definition and for the government to adopt the CCC as the current definition for the disease. If this occurs, then the main question would become whether people who do not meet the criteria have the same disease as the people who do meet the criteria (but perhaps are at an earlier/milder stage) -- which indeed is where the focus should be since that is the only way that we are going to be able to structure things in a way that will carry us into the future in any way that makes any sort of sense or that will get us anywhere that we want to go.
The CCC defines a discrete disease entity that (considering the lack of good research into this discrete population) is the best that we are going to do at this point in terms of putting together a clinical definition. The IOM is not going to do any better and (considering the fact that most of the people on the committee are non-experts who cannot use their own knowledge to augment the very poor research) likely will do much worse. Therefore, in terms of your suggestions to IOM, I suggest that you suggest that they recommend to the HHS that the CCC be adopted as the clinical definition for the disease for the present, until additional research into those meeting the CCC allows additional information to be gleaned that can be used to create a new definition through more standard means.
Lisa Petrison, Ph.D.
Executive Director
Paradigm Change
www.paradigmchange.me