May 23, 2013
me+ME: On my brother Geert and having M.E. for 35 years
1.  My brother Geert
2My M.E.
3What one learns, in 35 years of being only "ill"
4.  Have I been lucky in any way?
5.  What did I do wrong?
6.  What advice do I have?
About ME/CFS


I am still somewhat paying back my walk of 4 weeks ago, so I am still not feeling very well. But it may be improving some.

My brother Geert

This is actually quite useless, except for me: Today my brother Geert would have become 60 - except that he died, barely 6 years old.

So very probably I am the only person alive who recalls him.

The reason to write it down is that I recall him quite well, and recall his dying: He drowned in the Amsterdam Jan van Galenbad, after being pushed into the deep, by some unknown boys, while the bathing master was occupied looking at young women.

So much is clear, and that is about it, except for what followed it:

My mother was devastated, and we moved soon to another place, having lived 9 years in the Amsterdam Borgerstraat 203 ', which changed my life rather a lot, since I had to go to a decidedly much worse school, with a headmistress, also my teacher in the last year, who had been a Nazi during WW II, and hated communists, as my parents were.

This is again why I was not allowed - as my other brother was, who went to another school - to go to the grammar school ("gymnasium"). Also, since my parents had very little money, I had to go to the 3-yearly HBS, in fact like my mother also had done, which was quite below my real level.

And this, finally, made me only start studying when I was 28, because I finished those 3 years without doing any homework; got into regular verbal fights with the - idiot - director of the school, who lost these; but who got his revenge when I asked permission, that I needed, to get to the 5-yearly HBS, which gave access to the university: "Maarten is intelligent enough, but too lazy, so... I won't give him my permission".

And that's why I got working, and then quickly got taken up in the events of The Sixties in Amsterdam, after which I fell in love first with an English and then a Norwegian woman, which moved me first to England, and then to Norway.

I did read an enormous amount between age 16 and age 28, so that when I finally did arrive in the university, I easily had enough knowledge required for 3 or 4 M.A.s, but was not clear about that fact, and also fell ill with M.E. at 28, after half a year of studying - which never got better, and never was allowed to exist, except for the first ten years, when I did not know I had it.

Then when I finally got diagnosed, aged 39, Mr. Wessely had started writing on M.E., and declared it to be - essentially - a fake, a nonsense, an illusion, which again I did not know until late 2009, when I was 59, because I only then got fast internet access, and because M.E. then had become a news topic, due to its association with XMRV, that turned out to be due to contamination...

2. My M.E.

Also, I should add that the first 10 years of my disease were milder than the 25 years since, and that the first 10 years, during four of which I studied, I had some hopes of getting rid of it, though that never happened.

But in 1988, when I had started studying again, I was thrown from the faculty of philosophy - also having led a student-party in the early eighties, after which I had stopped studying having two B.A.'s and little health - and furthermore in that for me quite disastrous year the chimney in the house I lived in collapsed, which was not repaired by my landlord, in spite of - or rather: because of - the fact that he made a huge  amount of money exploiting an illegal coffee-shop, that stlll thrives, in 2013, selling marijuana and hashish, and that was semi-legalized by personal permission of the mayor of Amsterdam, Ed van Thijn, who had allowed its creation in 1987 in the house where I lived, without asking my permission, or anyone else's.

Also around 1987 there arrived two cafetarias straight opposite to me, while there was already one 10 meters to the right from where I lived, which meant, since all three had terraces, as did the coffee-shop on the bottom floor, that I could only sleep from April till October between 2 o'clock, when the drunk terraces- populations had finally gone home, and 7.30, when there often were deliveries of beer to one of the three cafées, in iron crates, that were thrown onto the street.

Nobody allowed any blame: My landlord did exactly nothing, from Agust 28 1988 till February 10, 1992, when I finally left. The city of Amsterdam, including mayor Ed van Thijn, who knew my parents superficially, since my father had been knighted in 1980 in the town hall, while my mother had worked in the resistance in Noordbrabant where Van Thijn was in hiding, being Jewish, did not even answer any of my personally delivered letters. The district attorney Teeven, presently a corrupt secretary of state, at the time protected the corrupt drugs-landlord, and only wrote me a leter of one sentence, stating that he would do nothing.

So I suffered and hardly slept decently for some 3 1/2 years - after which, at long last, I got another house, mostly because I did have a very good G.P. That house again was bothered by junkies, besides being very small, so I had to reside with my mother, while I was then aged 42 - which did get me another house, after more than a year, where I have lived ever since, always much worse than I had been till 1988.

3. What one learns, in 35 years of being only "ill"

Meanwhile, I have been in the dole since 1984 i.e. for 29 years. Officially, I am still not ill, though in 2011, aged 61 , I did get an official paper which says that till May 1, 2015, I will not be bothered with anything - and then I will be virtually 65 and will be pensionable. The only reason I got that "preferential treatment", I must fear, is my site.

What I learned
was this:
  • If you have an unknown disease, you'll be declared not ill.
  • If you have a known disease, without a known explanation, you'll be declared not ill (thanks to dr. Wessely and dr. Bleijenberg, and thanks to the insurance companies: it's so much cheaper!).
  • If you are in any way abnormal, you'll get into deep trouble, especially if you are ill.
  • If you are an opponent of the deeply drugs-corrupted Amsterdam local government, you'll get huge problems.
  • If you were an opponent of the marxists in the University of Amsterdam, during the 25 years those ruled - from 1970-1995 - you would get huge problems.
  • Nobody will help you; nobody will answer your letters; nobody is to blame for anything, exept you yourself, namely for being "ill" - and especially not the deeply drugs-corrupted  Amsterdam government, that in the last 25 years helped turn over at least 250 billion in illegal drugs, nor the directors of the university, who kicked you from the university, because you asked perfectly rational questions.
Also, I should remark that I have an M.A. in psychology with only A's (an average of 9.3 from 10: very rare), and that I would have left Holland at the latest 33 years ago, circa 1980, if I had been healthy: I had 2 B.A.s by then, even while ill, and could then have finished an M.A. and Ph.D. almost anywhere, being evidently brilliant.

But in fact, even then, I could not walk much more than 500 meters a day...

4. Have I been lucky in any way?

This may seem an odd question at this point, but the answer is that I have been, and in several respects:
  • I am brilliant, with an IQ over 150, at least when I was 27 or 28, before I fell ill (but I do not believe this is very significant, at least not over 130/140: Too little research has been done, and anyway an IQ is not a very good measure of human intelligence: Richard Feynman, who was an evident genius, had an IQ of 123, while George W. Bush, an evident idiot, had an IQ of 124 - so, knowing that, one can fairly infer IQ is not what it is said to be, by psychologists, even though it is a fairly good predictor of scholarly success/failure).
  • I could not be denied Amsterdam dole, and Amsterdam dole has been, at least, considerably better than dole elsewhere (since ten years or so this changed, though it still is better than in most countries), so in spite of my not getting anything most other Dutchmen do get, I did get more money than most who were ill with ME/CFS (and I always lived quite simply, which helped a lot).
  • I was born in 1950, and have not been involved in any war (unlike my parents), and probably lived in one of the richest countries on earth for most of my life.
  • I have been able to read most of my life, and have probably read more than anyone I know of, and this has been a great joy.
Then again, my life would have been very different if I had not been ill, and very probably I would have been a lot happier, simply because all of the above would have held, plus I would have been healthy.

5.  What did I do wrong?

I did do quite a lot wrong, but most of it was due to my being ill, not knowing what I had, and being anyway different from anyone else I know, and also from  expecting the first 15-20 years of my disease to either get better or to die, and meanwhile to act as I was - which is different from the rest:
  • I should not have started a student-party, being ill, knowing full well I would be discriminated (but never counted with being discriminated to the extent I was, included being kicked from the university of Amsterdam, by a bunch of sick rotters).
  • I should not have written as much as I did do about drugs in Amsterdam, but did not believe hardly anyone would be interested, and also did not believe most journalists are as stupid, cowardly and conformist as they are.
  • I should not have written the Spiegeloog-columns, though they are quite good, because they were too much against my personal interests, and also
  • I should not have protested in 1988 against the level of education I got, though I was quite right: The vast majority, inside and outside the university, was not interested, is not interested, and also does not have the brains to be interested.
Then again, it is as I said: Being different, I acted differently from how other people with my disease acted, in the quite unsatisfied trust that I would be helped or would get better: No, I was not helped, in part because I was and am different [1], and I certainly did not get better.

6.   What advice do I have?

Actually, I have hardly any advice: Firstly, I clearly am too different from other people; secondly, I lived mostly - and that was why I was lucky - during the rich days in one of the richest countries, so that in spite of my personal poverty, and mostly through living very simply and not drinking and smoking, I could buy books, at least till 2000, and did have a somewhat tolerable if rather ill life, the last 20 years; thirdly, I am now nearly 65; and fourthly, I think the real situation has gotten much worse for everybody, except bankmanagers, who get millions,  because of the - seemingly - interminable crisis.

So what I fear are great difficulties for everybody who is considerably younger than I am and who is ill, and especially if they have ME/CFS, and live in England or the US, and have little or no money.

[1] The only exception, apart from my direct family, was prof.dr. Peter C.M. Molenaar, who about 10 years ago emigrated to the US with his family, and the woman I got ill with, and seperated from in 1983, 30 years ago, in order to save at least one of us two. Everybody else either did not (really) care, quite evidently, or betrayed me, and indeed often the Dutch laws as well:

There was no reason and no right to remove me from the university, nor was there any reason nor any right to protect the Amsterdam drugsdealers.

Both happened, the former because the University of Amsterdam was quite sick between 1970 and 1995, namely because it had been given to the students, in effect, and the latter because in Amsterdam selling illegal drugs is how the city-government survives.

About ME/CFS (that I prefer to call M.E.: The "/CFS" is added to facilitate search machines) which is a disease I have since 1.1.1979:
1. Anthony Komaroff

Ten discoveries about the biology of CFS(pdf)

3. Hillary Johnson

The Why  (currently not available)

4. Consensus (many M.D.s) Canadian Consensus Government Report on ME (pdf - version 2003)
5. Consensus (many M.D.s) Canadian Consensus Government Report on ME (pdf - version 2011)
6. Eleanor Stein

Clinical Guidelines for Psychiatrists (pdf)

7. William Clifford The Ethics of Belief
8. Malcolm Hooper Magical Medicine (pdf)
Maarten Maartensz
Resources about ME/CFS
(more resources, by many)

       home - index - summaries - mail