Quote Originally Posted by Gerwyn View Post
Hi I agree with every word--some so called scientific studies involving stats make me want to cry!

Hi Gerwyn, thanks, indeed - or laugh, scream, or start throwing one's statistical library in their general direction. (Kendall & Stuart (*) have high impact, in the full edition.) None of this will help any, unfortunately.

As a side note: I think this forum is still inventing itself, but already remarkably successful, and should allow - eventually - several Good Things, such as a coordinated group of people with some knowledge of science while having ME.

And incidentally, as I saw in another thread this interests you: I have myself invented the mitochrondial hypothesis for ME - or rather: the symptoms that ailed me, for I learned of ME only in 1989 - in 1986 or 1987, based on my own symptoms and those of my ex-wife, who has it also, and on my findings with B-vitamins, C and E, and a dive into biochemistry (that never was a major interest of mine). I have also written it out at the time, and have given it to several medical doctors, without receiving anything but faint praise in answer.

But there are quite a few scientifically qualified people with ME on the forum, and I think a gathering of minds and some making of plans may be a good idea. (Also in other respects - by which I mean this forum should give its members a means to set up coordinated groups of patients with ME, who try to realize some specific end, whether publicity, advocacy, or organizations of findings about treatments, medicines, supplements, diets etc. that may work (some, for some). This also should involve some prior brainstorming, and not get overly mixed up with the forum as an electronic talking place.)

As to science and ME: While I do not know whether Sir William Osler is always right that listening to the patients will provide the clues for successful treatment, it may be of help for good and healthy scientific researchers of ME to be able to communicate with a coordinated group of scientifically qualified persons with ME, if only because the latter know and understand most or a good part of the science the former presuppose, and know the disease and its symptoms first hand.

And maybe we can also hammer out some ideas of our own, or suggest what manner of research is likely most useful for patients. O, and get some sort of hold on research funding, as persons who are both directly concerned with good scientifc research into ME and are capable of judging at least part of the real and mock scientific research that does take place.


(*) "The Advanced Theory or Statistics", in 3 volumes, of venerable age, but still very good, and quite hefty also, in my clothbound edition of 1960.