justinreilly
Senior Member
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- 2,498
- Location
- NYC (& RI)
Hi Jewel,
Thanks for sharing that. I am sorry to have read about your mum. GB sounds very frightening indeed and I try to remember the same thing - that there are innumerable shades of awful. It helps.
Hi Heapsreal
Osler's Web is a great read isnt it? I think it should be mandatory reading for all ME and CFS advocates.
CFS is not recognised as a neuro immune disease, because it was never defined that way. The key feature of the definition that distinguishes it from other illnesses, is unremitting fatigue for 6 mths or more and that it a diagnosis of exclusion. ME however, is not a diagnosis of exclusion and is not a syndrome and is classified as a neurological illness because its key defining feature is Central Nervous System Dysfunction.
So the CDC's focus on the Lake Tahoe Co hort- was always the unremitting fatigue they found in the patients, and so they defined it that way.
I cant recall when Cheney et al showed the MRIs with UBO to the CDC, but if it was after the definition, then that response was to be expected.
If it was before, the response could have been predicted, because as I recall - Holmes went to Lake Tahoe with the view that the outbreak was mono and then appeared to only investigate mono. So the evidence brought back for the CDC to consider - was mono based and that gave rise to the CDC definition of CFS. I dont think they see UBOs in mono patients - so again, that is probably why the dismissed it. That is my recollection, but it has been some time since I have read it.
They knew or should definitely have known, i forget which, that it wasn't mono. Cheney and Peterson always said it wasn't. Mono goes away after a week or two. Every college kid knows that. James Jones wrote one of the first articles and even he said that. Holmes and Kaplan went out there for a ski trip, nothing more.