ME - Experience

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.

Finally, in the spring of 2005 I learned that, meanwhile, in Amsterdam, where I live, there had been created a "Chronic Fatigue Centre", meanwhile with considerable international standing and many patients, where I was accepted as a patient in the summer, and received in writing, from medical doctors after being ill without help for nearly 27 years, that I was ill and that the diagnosis was ME/CFS. If you are Dutch and believe you might have ME, here is a link: CFSCentrumAmsterdam.

So far having medical specialists write that I am indeed ill and have been so, without any help, for 26 years, has made no bureaucratic difference whatsoever: My consistent experience has been for 26 years 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 assistance whatsoever.

Happily, I do get some medical help, and indeed I have also been blessed the last 20 years by two very good G.P.'s, without whom I very probably would not have survived.

In 2005 I started using l-carnitine prescribed by a medical specialist on M.E. in doses of 4, 6 and 8 grams a day.

The first half year this made no really noticeable difference, and I stopped experimentally with it for 6 weeks, to see whether that made a difference. It did, for it gradually grew worse, which tendency was reverted when I took it again, which I have done ever since, taking 6 grams a day.

Since then, which is a period of a year, I have been better than I have been the last 10 years, though I am far from cured.

So the brief summary is that l-carnitine has helped me and does help me some, especially as regards energy, whereas it seems to do little - so far - against my muscle aches. But it works slowly, and I still have ME, and don't know whether it will cure me or at least keep improving slowly.

Also, it is noteworthy that this is the first medicine I have been prescribed by a medical doctor, that is also refunded by the insurance (and else I couldn'ty pay it), that does help me as regards the specific effects of ME, and not some of its side-effects.

Maarten Maartensz       
last update: Nov 2, 2009