ME - Problems

There are many medical problems with ME, but the main one - supposing you survive and do not commit suicide - is that you do not get any help whatsoever, because there is no bio-chemical marker for the disease, and doctors are prone to insist that "therefore" you are not ill, are malingering, are lying, or suffer from "psychosomatic" complaints.

And the bureaucrats you'll meet most probably will insist that you are not ill and must be malingering, since not helping saves "the community" in health benefits or dole money, and all that is at stake for them is merely your life, which they don't lead, and your pain, which they don't feel.

Indeed, in the country where I live - Holland - any junk gets lots of help, varying from extra money for new teeth to free methadon and heroin, all "to help them integrate into Dutch society", and I get no help whatsoever, because junks have a problem that has a bio-chemical marker (the drugs they shoot and sniff), and I don't.

Does this sound somewhat bitter? It is somewhat bitter, and I have ME/CFS for 26 years now, since January 1, 1979, and it is only in this year, August 2005, that I have found qualified specialist medical help, namely from the CFSCentrumAmsterdam. And again, this is not help from the Dutch or Amsterdam authorities.

Before that, I was only helped by my G.P., and was lucky enough to have had really good G.P.s for the last 20 years, without whom I very probably would not have survived.

For a little more see ME - Experience, which describes my experiences with l-carnitine, that has the virtue of helping me some.

Maarten Maartensz       
last update: Sep 16 2007