ME - Experience
What follows is from 2009 or before, except for the end:
I fell ill with ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome) on January 1, 1979, and my common law wife on January 10, 1979. At the time we were both university students. Initially it was diagnosed as mononucleosis (Pfeiffer's disease a.k.a. Kissing Disease), which may take several months to get rid off.
When it had not disappeared after half a year, the problems really started:
Doctors insisted in effect that what they did not know and could not find in medical books could not exist, and "therefore" we were not "really" ill, but what ailed us - lack of energy, continued "tiredness" better named as exhaustion, muscle aches, headaches, diarrhea, night sweats - must be "psychosomatic".
Since we had no advantage whatsoever from claiming we were ill, such has health benefits, and both studied from study-loans, we were repeatedly seriously investigated medically, but always with the same effect: "We cannot find anything".
Although ME/CFS at the time was known, and accepted by some doctors as a real disease, it was not well-known, and there also was no internet to make it well-known, or to facilitate one's own research into possible causes of one's complaints.
After nearly six years of illness and quite a few medical investigations with no result other than that nothing could be found, my wife and I separated.
In 1989 I first learned about ME, that at the time was not known by the name CFS, and immediately recognized that its symptoms fitted very well with the symptoms I had - quite clearly and completely - written down ever since 1980, for the perusal of medical doctors, to no avail.
I also had a found (after discarding many medical doctors on the ground that I could accept the diagnosis that nothing could be found, but not the diagnosis that "therefore" what ailed me "must" be "psychosomatic", which anyway seemed and seems an oxymoron to me) a good G.P. - but this did not help me getting any help from Dutch bureaucrats or from the University of Amsterdam, where I studied.
In 1992 the WHO (World Health Organization) accepted that ME was a serious disease, mainly because many G.P.s in many countries had met patients like me: Persons who claimed to have specific kinds of complaints, mentioned above; who had no special interest or advantage from claiming ill health; and who where not mentally ill.
It made no difference to my situation in Holland, apparently because there was at that time a system of health benefits for people who worked that did make it advantageous for some to claim a disease while not having it, and because helping me would cost the Dutch State some money, which Dutch bureaucrats and Dutch ministers rather use to raise salaries or benefits of Dutch bureaucrats.
In 1993 I finally - after many difficulties with the University of Amsterdam, from which I was removed three times for reasons not related to my health but to my opinions about post-modernism, politics, education, science and philosophy, and after having been removed from the faculty of philosophy briefly before taking my M.A. "because of your outspoken opinions" - I finally got the best possible M.A. in psychology.
It made no difference to me: I was in the dole, and the University of Amsterdam was not interested in helping brilliant or even in intelligent students, but only in helping politically correct students - who indeed got the jobs and lots of help.
For various reasons, all related to the fact that I got consistently no help whatsoever, and had to survive by my own efforts on minimal dole, my health steadily declined.
I did get over the years various written statements from medical people that I am ill, and that I have M.E., but the opinion of a medical doctor is as naught compared to the wisdom of an arbitrary Dutch bureaucrat: They refuse to believe in it, and they have the power and make the decisions.
So far for what I wrote in or before 2009. This is from 2016:
Getting a top degree in psychology made no difference to my discrimination; having an ex who has the same disease made no difference to my discrimination; that we both got ill in the first year of our university studies made no differences to my discrimination; in brief, for 37 years my ex and myself have been systematically discriminated by almost any Dutch bureaucrat who knew about us: we were not ill, they said, not knowing fuck about medicine or psychoogy, and therefore we got no help of any kind that was not also given to healthy people, and which basically consisted of minimal dole. (I have asked very many times, and was almost every time lied to by bureaucrats, who did their best not to give me any money whatsoever. Thus, I had to move five times during 37 years I was ill; I had medical testimonials that I was ill; I had an absolutely minimal income; but I got no money to move each and every time, sometimes on the basis of total lies.)
I have given up on Dutch bureaucracy.
Since my father was the only knighted communist (while the CPN existed in Holland), and since I have been called "a fascist" or "a dirty fascist" for ten years by various members of the ASVA because I was not a Marxist (!!) and without anybody ever protesting that discrimination, here is my explanation why in Holland over 100.000 Jews were arrested and murdered between 1941 and 1945: The bureaucrats then were the fathers or uncles or are in any case hardly distinguishable from the bureaucrats now, and nearly all collaborated then enthusiastically with the Nazis. (And please remember that according to Dutch laws everyone has the same value as everyone else, from sadists and drugscriminals to mayors and bureacrats.)
So far having medical specialists write that I am indeed ill and have been so, without any help, for 37 years now, has made no bureaucratic difference whatsoever: My consistent experience has been for 37 years now (in 2016) that for the likes of me there is in Holland no help whatsoever except minimal dole and bureaucrats who pretend that I am not ill, and that I am not entitled to any help or any assistance whatsoever. And each bureaucrat who thinks so is quite capable of doing a lot to deny me some money, but no bureaucrat ever did anything for me.
Happily, I have had some good medical help, and indeed I have also been blessed for 13 years with a very good G.P., without whom I very probably would not have survived, but that is about all the help I got, indeed except from my family and a few friends.
In 2009 I learned about XMRV, and became a member of Phoenix Forums, for people with ME. The brief summary is that I stopped myself being a member of Phoenix in May 2010 (after 4 months) and got removed from MEforum, I guess because I am too intelligent for many (others were also removed for the same reason: yes, they were).
I did follow the XMRV-story for two years but totally gave up after precisely two years (on October 8, 2011: an interesting and long set of reasons) and since then XMRV was admitted to be an artefact, that also may have been a fraud.
In 2012 I started a decent experiment with mB12 and folic acid, and managed to get rid of most of the pain I have had in the daytime between 1990 and 2010, but did not much increase in energy. Here is a reference to April 1, 2012, in which I explain what I took then. I also should explain that I used variants of what I took then from April 2012 till April 2016 (and later).
Also in 2012 my eyes collapsed in May-June. I was diagnosed as having "dry eyes" aka kerato-conjunctivitis sicca, which was quite painful and quite limiting from 2012 till the end of 2015. A bit earlier than my eyes collapsed my right little finger got Dupuyteren. Both complaints may be explained by reference to M.E. but the chances of developing either disease, although larger with M.E., are not very great.
It did make important changes in my life, because I could not read well for a long time and my visualization (which is - or was - extremely good) was a lot worse for over 3 years (it is rather bettter now, since 2016), and I also had to have an adjusted computer (which I still have).
There also will be made some further changes in the ME section, for I did very little with it since 2011, but this will have to wait until I have rewritten the site. Also, two additional reasons that I did not write much about ME since 2011 are that (1) medics still do hardly any medical research, and (2) I have given up on most patients with M.E. since it seems necessary to have an IQ of 100 at most. Well, I am very sorry: I got one of the best M.A.'s ever (in spite of being ill all the time and never hearing any lectures), and I am not going to pretend I am far more stupid than I am.
last update: Sep 9, 2016