He used both "encephalopathy' and 'encephalomyeitis' on the webinar. I know there's history here but I think you may be reading too much into his use of the first term.
Also, Hooper is conflating Nath and the IOM report, which confuses the issue. Nath did not rename this illness.
Thanks for your response.
I recall nearly all Nath's slides and own references to the full terminology (not acronyms) were to Myalgic Encephalomyopathy. The references Nath made to Myalgic Encephalomyelitis were when referring to the IOM report. I therefore do not understand why given the NIH itself refer to Myalgic Encephalomyelitis Nath has referred to is as Myalgic Encephalomyopathy.
This confusion over terminology and names and classifications has caused huge amounts of problems with certain UK doctors resulting in the PACE trial. Also some skeptical doctors or bodies could then claim that this study does not really apply to those with Myalgic Encephalomyelitis/Chronic Fatigue Syndome.
You are right there is alot of history and also in the context of social security, insurance etc these small technicalities can and are used to exploit the situation.
Therefore it would be important and consistent to use the term Myalgic Encephalomyelitis (given it is the name used since the 1950s and in the ICD) to avoid even any of these problems and concerns and perceptions from the patient community would you not agree?
As said before I am cautiously optimistic with this study.
I agree Hooper also discusses the NIH and SEID issue here but that is presumably because NIH commissioned the IOM report and Nath is also a NIH employee and NIH ME/CFS representative.
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