I am a new member of this forum, that I like from being a guest to it.
As my title indicates I am Dutch, which is relevant in the sense that one's possibilities with ME seem to depend rather a lot on the health care and social care in the country one lives. I don't know much about the US situation, except that it is worse than the Dutch one, which is not good either, at least if one has ME. (The Dutch Wesselys are called Bleyenberg and Van der Meer.)
As to me and ME:
I am nearly 60; Dutch; male; I am ill since I fell ill - like my then common law wife - with mononucleosis (Epstein Barr) on 1.1.1979, aged 28; and I maintain a large website in English and Dutch that is concerned with my main interests philosophy, logic, computing and ME. It is here:
maartensz.org (and also mirrored)
It also is some 150 MB of html, so there is a lot to read, mostly not about ME, while what there is about ME is mostly in Dutch and relates to my personal situation in Amsterdam with ME, that is somewhat different from others in some respects, although the fact that there is no decent help for people with ME is the same worldwide, it seems.
As it happens, I have a B.A. in philosophy; was removed from the University of Amsterdam because of "your outspoken ideas about the level of education" (as the Board of Directors wrote me) just before being able to take my M.A. in philosophy, for which reason I took an M.A. in psychology, since I also had a B.A. in that. I was not allowed to take a Ph.D., in spite of strong support for that from professors who know me, again because of my outspoken opinions, and in spite of the fact that the M.A. I hold is most excellent. (It is also mostly on mathematical subjects though, because I have a low opinion of psychology as a science, and never desired to be "a professional psychologist": In fact I started studying it because my dominant interest is human reasoning and because I liked William James's "The Principles of Psychology".)
My basic response to ME, ever since seeing approx. 50 healers of all kinds, with or without my ex, from 979-1981, and being effectively and clearly lied to by most, is that it is a physical disease with an unknown cause that badly needs a real scientific - biochemical, physical, organic - explanation, and that personally I want to avoid spending more time on it than is necessary, since my interests and abilities are neither medical nor biochemical.
But I am waiting now for 32 years, and there still is no decent scientific explanation, although I recently found - thanks to Hillary Johnson and Malcolm Hooper - that parts of the explanation for that sad fact go by the names of Wessely, Sharpe, CDC and others, such as Bleyenberg and Van der Meer in Holland, all medical frauds by my lights and knowledge, and very dangerous with it also.
What else can I say? Lots more, except that much of it is already on my site (probably in Dutch though) and except that I am well aware that it is rather difficult to understand one's position as a patient with ME in so far as that relates to the health care and social care in one's country.
This difference is one reason why I don't know whether I will contribute much in prose to this forum (which I do find interesting, inspiring and well done), and another reason is that I spend most of such energy as I have available on my own site.