We do not understand why anyone in the UK would proactively recommend the IOM Criteria, which
ignores not only the true nature of the disease, ME, but also Severe ME, which the IOM did not study.
The IOM report acknowledges, in chapter 4, under the section “External Validity” that the research base likely excludes the bedridden or homebound.
In no other disease definition are the most severely affected excluded!!
The IOM does not take into account the full symptom experience in ME. How can anyone, then, possibly recommend its adoption?
With NICE looming THE ONLY CRITERIA THAT WILL SUFFICE ARE THOSE LIKE THE ICC CRITERIA, WHICH TAKE INTO ACCOUNT the Neurological, Autonomic, Neuroendocrine and Immune system malfunctions that constitute M.E. , a disease at least as disabling or more disabling than other chronic diseases such as lupus, multiple sclerosis or rheumatoid arthritis, more extreme than end-stage renal disease and heart disease with a sickness impact equivalent to that of terminally ill cancer and stroke patients.
Anything else is a gift to the MUS lobby, who will misinterpret the symptoms as unexplained and psychiatric, requiring psychosocial not medical responses. This is a very real and present danger to the ME community, especially to people with Severe/Very Severe ME, who are particularly vulnerable to misinterpretation.


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