Jonathan Edwards
Senior Member (Voting Rights)
This is how the ME Vereniging Nederland currently describes ME (link: http://www.mevereniging.nl/wat-is-me/).
Dear Guido @Guido den Broeder ,
My view as a physician is that this description is of a disease that does not actually exist. It brings together a number of historical speculations but in the last two decades as far as I know nobody has found any good evidence for the existence of such a disease. My reading of Ramsey's description is that he correctly identified people who developed a long term illness that can be called ME/CFS but that his idea that this followed an acute encephalomyelitis was wrong. I do not remember what Dr Hyde was supposed to have food but I don't think it has been borne out by anything else much and I remember looking at the paper and not being very impressed.
We really do not have anything to go on in terms of immune dysfunction. All the suggested findings have fizzled out. And I do not know what evidence there is for a vascular problem.
I have certainly never met a person with this speculated disease. What I have met are people with the syndrome of chronic illness almost universally called ME/CFS amongst scientists now.
Maybe this differences of view do not matter but I do worry that people newly diagnosed may be misled into thinking they have an encephalitic disease when they do not.