Are we talking at cross purposes? I don't see the point of this in the context of government-funded studies to drive government policy vs privately-funded criteria documents. What am I missing?
For me, the issue is one of how a disease is defined. The World Health Organization established the International Classification of Diseases to allow morbidity and mortality tracking of diseases globally. There is a strict process that includes international agreement on how new disease terms are added to the ICD. Countries are allowed to have country-specific modifications to that classification, which the U.S. does and I believe Canada as well. Those modifications are supposed to be ruled by standards that govern the kinds of changes that are made. It would impede global tracking if a country reclassified diseases any old way they wanted to, for instance from a neurological disease to a mental health disease.
But ICD only establishes the disease names and a brief description. It does not describe disease criteria. If each country defines its own separate criteria for a given disease, that would also impede WHO's goal of a common reference of diseases. And more practically for patients, doing that will make it difficult to build on the results of international research to identify treatments. While not necessarily country-specific criteria, we've lived the problem of discordant definitions for the same disease for too many years.
It strikes me that the IOM initiative is part policy and part disease definition. The policy part is to create a simple criteria that can be used by GPs in this country with our particular medical practices, insurance reimbursement, etc. But the other part is defining new criteria for a disease, which I believe ideally would be done with international input. As it stands now, its unclear as to what disease the SEID criteria are intended to describe, particularly on whether they are intended to describe the disease described by CCC and ME-ICC.
The lack of funding and the poor treatment of ME patients by the Canadian government - and really all governments - are very valid points. But they feel like separate issues from the establishment of new disease criteria.