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Nederlog


  November
11, 2013 
me+ME: 17 years a site 
Sections
Introduction
1. me
2. ME
3.
site(s)
About ME/CFS

Introduction

This file is not about the crisis, but is as it is because today the site exists 17 years:



So this file is about that fact. As the reader sees, this is about me, about ME (the disease) and about my site(s), for there are two, in two countries, though they mirror each other, or at least should (and largely do).

Most may not be much interested, but I have said a few things that need saying in Holland, although I agree few listen. And tomorrow there will be another crisis item.

Also, I have somewhat checked for crisis news: There is not much, so you'll have to wait till tomorrow if you came for that. But since you may be here for just that purpose, here is a bit by Greenwald, quoted from today's Snowden files in the Guardian:

[Greenwald - MM] also defended the publication of Snowden's leaks, saying:

I think not publishing the leaks puts [people] in danger because when you have a system of government in which people can exercise great power in the dark, that’s what is dangerous.

Terrorists have long ago known that the US and UK governments do everything possible to monitor their communications … We didn’t tell the terrorists anything they didn’t already know. What we’ve told people that they didn’t already know, ordinary citizens all around the world, is that this spying system is directed not at the terrorists but at them.

Yes, precisely so!

1. me

As it happens, I am far from healthy, but am rather a lot better than I was a year ago.

The reason is that I got keratoconjunctivitis sicca in late May of 2012, and I got that quite badly, to the extent that my eyes felt constantly as if they were abrasions rather than eyes, and I had to spend most of the day in the dark.

This went on and on (and on and on and on) from June till November 2012, when it finally stopped growing worse, most probably due to several months of dripping with Duratears, since when it has been growing better, albeit very slowly.

I still cannot look at a white screen for a long time (that is: more than 5 - 10 minutes), and I still feel my eyes most of the time, but they definitely have improved, and they also still are improving.

Apart from that, and from two other autoimmune diseases, I still have ME, but this too has been improving some through supplementing with metafolin and methyl-B12.

The extent of the improval is rather difficult to determine in my case, firstly, because there still is no really good protocol, although I have been helped rather a lot two times, namely in the summer of 2011 and in the spring of 2012, but I did not use the proper proportions then, and had to stop both times.

Since then I have had
keratoconjunctivitis sicca, which also caused my sleeping for over a year to fall to between 3 1/2 to 4 and at most 6 1/2 hours each night, which is much too short for me, since I need 8 hours, and always did.

Then again, and completely against 34 years of experience, this did not cause any further collapse, as I had much feared, which is strong evidence that supplementing with methyl-B12 and metafolin does (at least) help me.

I am presently, after two months of being able to sleep more or less normally again, mostly because of my improving eyes, again also improving some in ME, and am certainly a bit better on average than I was from 2002 - 2010, but I am now also 63 while I am quite certain that the protocol I use may still be considerably improved. [1]

In any case, I have bought a bicycle, which I did not drive since the previous millenium,
and I can cycle about an hour a day, without serious consequences, but this also is the limit for what I can do, next to writing an NL for the site.

2. ME

I have M.E. - Myalgic Encephalomyelitis [2] - now since 1.1.1979, that is, this is my 35th year with the disease, which I got as a first-year student of philosophy and of psychology, as did the woman I then lived with, who also never lost the disease.

In both our cases, this started "the classical way", namely through an infection with Epstein-Barr, which incidentally itself is a disease that is not well-known, but that usually resolves, somehow, in 2 - 6 months.

It did not in our case, and indeed we had a lot to do that first year of our studies, that may have contributed to our not properly healing. In any case, it didn't heal properly, and within 4 months the woman I lived with was accused of having a "psychosomatic disorder" by her doctor - who was a new GP, who had just started, and who did not know anything of her, nor of me, nor of her position in life, but who had learned that anything he doesn't know or understand about disease "must" be "psychosomatic".

In fact, we were both very happy: we started living together in the summer of 1978, and firmly intended to marry and to have children, and also had both started to study psychology, and doing so was a major goal for each of us (that we also both finished, both with excellent degrees, albeit eventually, and albeit these degrees turned out to be completely useless, as even the bureaucrats of the dole refuse to use my title).

But we were both ill, if not as bad as at the start of the disease, and we would have profited a lot if we would have had some help. This we did not get, and that also - I am very firmly confirmed - is the reason for this "it-is-psychosomatic-because... we-cannot-find-anything" diagnosis: the average doctor rather pretends being omniscient than admitting that he or she doesn't know something (yes, there are exceptions - but they are exceptions) and, more importantly, once you get the label that you are in some way "mad", no one will help you, and everyone will discriminate you, and that too has its attractions for many, although they do not advertize that.

This is indeed what happened to us. We went to several tens of doctors, mostly for one of us, that differed, but no one could find anything wrong with either. At the time, no more than about half, perhaps even less, decided that "we cannot find anything and 'therefore' you are making it up" (which is what "psychosomatic" means, in practice), simply because the more intelligent doctors (which in my experience is a fairly rare specimen) could see that we were both very intelligent, and were very happy with each other, except for the disease, and that also we had absolutely nothing to gain by claiming to be ill, since we were fist-year students, who lived on loans.

However, in the end, and after more than one and a half year, we did get the offer of a student house in Amsterdam, also not far from the faculty of psychology, that we gladly accepted because until then we had lived in Diemen, which is on the border of Amsterdam, which made it very difficult to follow the practices we had to study for psychology, which all required personal attendance.

This turned out to be a deception: We lived next to a neighbor who turned out to be stark raving insane, and who soon decided he did not like us, and who kept us awake in the night, by playing opera, and who attacked me physically during the day, after relieving himself for 4 to 6 hours of screaming in the shared telephone that he would kill this one, murder that one etc.

Also, this introduced us to that great wealth of neighborly help, solidarity and assistance that the Dutch have created: Everybody for himself, no one for someone else (if not family or friends), while the municipal police refused to come tens of times, and did assure us the only time they came, that "all Amsterdammers are motherfuckers" - for the policemen came from Groningen, and you can't attack a Dutch policeman - "and we only come when the bodies are laying dead on the floor". (Yes, I have quoted.)

In the end, because the student house foundation from whom we rented the place also did not do anything whatsoever, we refused to pay the rent, and the foundation, headed by the Board of Directors of the University of Amsterdam, went to court against me, with all the more pleasure because they knew I had been asked to start a student-party, which I had done, because I was much opposed to the education I got: I thought it too simple, too unscientific and too political - in which I was completely right, except for the fact that I did not yet know that most Dutchmen agree to almost anything that the majority agrees to, and especially agree to getting academic degrees for doing virtually nothing, which is what happened in most softer studies between 1971 and 1995, when the students ruled the Dutch universities, thanks to a decision of minister Veringa in 1971, who had decided it was safer to hand it to them. (This was different from any other country.)

This court case took until May 1985 - some 3 1/2 years - to get resolved, but indeed was resolved in our interest, which saved the rent, but did little else, for the Board of Directors of the University of Amsterdam simply refused to answer my letters, and that was that.

Also, by 1985 my girlfriend and I had separated, and I had moved twice, and also had found, in 1983 in England, where I had fled to because I could not sleep at all in Amsterdam, thanks to the operas my neigbour played till 4 o'clock in the night, that vitamins helped me, in large doses, and indeed without having any belief before I started this, and also without ever finding a good explanation.

But it did improve my condition, although it did not cure, and 1984 and 1985 were two of the years I had the least trouble since 1.1.1979, in which I also was relatively happy.

Also, it was only in 1989 that I learned about M.E. and that I was first diagnosed by my GP as having "M.E./F.M.", where the second possibility, Fibromyalgia, was added because I did have rather a lot of pain, which also is and was always the main reason for not being able to sleep enough.

However, by that time Simon Wessely already had started to destroy as many lives as he could, namely by insisting that he knew what no one else knew, namely that the around 17 million people who have M.E. do not have M.E., which anyway does not exist, in his psychiatric opinion, and that everybody would clear up
by taking a grip on themselves, and by doing a goodly amount of exercises, and if they didn't, by getting stiff doses of cognitive, behavioral therapy (which is mostly an adapted form of Freudian bullshit, but with more paper and with scoring cards), and namely because they - all 17 million of them - are frauds, rather than himself and his handful of likeminded  psychiatric colleagues. In his opinion, of course.

Because these psychiatric efforts, also strongly supported by Reeves in the U.S., by Bleijenberg in Holland, and by Fink in Denmark, have one very certain outcome: they lessen costs for the health-insurances, this total
bullshit got a lot of support, and destroyed a lot of lives, namely by refusing ill, sometimes extremely ill, people any support whatsoever on the grounds that they were "mad", which made quite a few commit suicide, and which also made quite a few psychiatrists quite rich, while doing absolutely nothing for almost anyone of the 17 million with the disease, simply because it is a real disease. [3]

Meanwhile, I had been gassed by my landlord in 1988, probably because I had insisted too much that I did not want to live above the illegal drugsdealers he had rented the bottom floor of the house to that I lived in.

Well, this was Amsterdam, the great and glorious Amsterdam:

He had the chimney I had been complaining about "repaired" by collapsing it internally, which caused both me and my neighbour to be gassed, by carbon-monoxide, that we barely survived, and which needed a breaking open of the chimney at two places to remove several sacks of stones and debris - after which the municipal building-service insisted for more than 3 years that I was a liar; that the chimney had not collapsed; that there was nothing to see; and that I should move to another country if I did not love Amsterdam.

Also, the municipal police refused to do anything; the mafia-major Ed van Thijn refused to answer my letters, as did the aldermen, as did the members of the city-council, so by 1992, when my GP had succeeded in finding another house for me, I had concluded that, what turned out in 1996 to be 10 Billion euros a year of turn-over in just soft drugs in Holland (and much more if other drugs are counted) are being turned over with enormous help from the mayors, the aldermen, the bureaucracy, the police, and the district attorneys, who indeed by scoring a mere 5% of that amount, which they can very easily do using their bureaucratic apparatus, since they know where and who deal illegaly, would make a mere 500 million euros a year for them. Indeed, even 1% is 100 million euros, surely enough to corrupt very many.

But by 1992 what remained of my health was also totally destroyed, although I did get a lawyer, the landlord, and the municipal bureaucrats in the house on the day I left it, and could decide that indeed the chimney still was collapsed, since August 1988, and that it also was extremely dangerous, and was leaking smoke on all sides.

My letters about this again were again never answered: Not by any mayor, nor any alderman, not any councilmember, nor any bureaucrat, nor any policeman, nor any district-attorney. For them, it was best that I died, and I was completely without rights.

However, I also was considerably worse than I had ever been since 1979, and that basically because I had opposed being kept awake by illegal drugsdealers who were the personal friends of the mayor, whose signed "permit" to deal illegal drugs hang in their shop, and who also had excellent ties with the Amsterdam bureaucracy and the police.

And this started - so far - 25 years of increased pain and misery and even less energy:

That is: my life and such health as I had in 1985 have been intentionally destroyed by the Amsterdam mayors, aldermen, lawyers, policemen and bureaucrats who ruled Amsterdam the last 25 years at least for the benefit of the Dutch drugs-mafia, and for their own illegal profits, all because I dared to resist their degenerate impertinence, and also because I simply could not flee from the place I was because I was ill and poor.

There is much more about this (in Dutch) in ME in Amsterdam, which has been on line now since 2001, and has never been contradicted in any way. [4]

3. site(s)

As I said in the introduction, I own two sites, one in Holland, and one in Denmark.

The reason for two sites, that both show the same, is especially the service that the mock "xs4all.nl", which is in fact since some 13 years a KPN site, that exploited the name it bought in a horrible way, has not given me since 2000, and the many lies its personnel told me in the years 2001-2004, for I was then constantly told by two sadists there that my complaints could not be true, for other people did not have them either. (Literally: "No, your modem does not work at 4K, because it does not work that way for others." Well... it did, and for years, if not always.) Besides, the service was and is horrible, since it became KPN. There are not even statistics.

So therefore in 2004 I got another site, in another country that has at least a tradition of free speech, namely in Denmark, and this has been consistently a lot better, though I should also say that (i) since 2007 I never complain to the mock "xs4all.nl" except if the computer stops, and (ii) it has become a bit less awful since 2009, when I got fast internet (because I do not use a modem anymore, that often ran on 4 Kb a second).

As to the site(s):

They have grown this year from 405 MB to 492 MB, but this was mostly due to Nederlog. to my vader's brochure, to Thoreau, though the last is not much, since I skipped most of his texts, and published only his sayings with my brief notes, and to Wittgenstein, that got finally finished: the full text of the Tractatus plus my comments are now on line (and show he accomplished very little).

You probably get the best idea of the whole site, that by now has the size of some 100 to 200 books if it were printed, by browsing through the items in the directories-index, which is indeed only a list of directories, and quite long. Each directory usually gives access to many files, through which you can navigate by using the arrows on the top of the files, and sometimes also at the bottom.
------------------------------
Notes
[1] One of the reasons I am still getting angry about patients' lists is that while they are somewhat helpful about the methyl-B12-protocol + metafolin, it is extremely hard going to read through hundreds and hundreds of ill-written mails that give hardly any information, while also hardly anyone even lists his or her supplements in a clear and complete way. It is such a waste of my time and of your energy!

[2] I really reject "chronic fatigue syndrome" as a name for what ails me:

This is a name invented by the pseudoscientific psychiatrists, who since 1980 have "discovered" around 200 "disorders" that no one ever thought to be such, but all of which allowed them to drug patients with extremely expensive drugs, that often did not work, and that very regularly had bad side-effects, but which did mean, literally, billions of profits for Big Parma and their psychiatric shills.

I have a - very brilliant - M.A. in psychology, and having read the evidence since 2010, I advice anybody not to visit any psychiatrist: these are pseudoscientific frauds, at least since 1980, when the DSM-III got published, and they also very probably will not help you in any way except by prescribing all manner of expensive and dangerous medicines that probably will not help you, and that also may much damage you, because of side-effects that have been repressed by Big Pharma, that colludes witn psychiatrists, and is only out to sell their expensive medicines by hook or by crook.

Psychiatry these days consists for the most part in wilful fraudulence. They do not do science: they do pseudoscience. If you need psychotherapeutical help, a psychologist is the safe choice; if you need psychiatric drugs, your GP knows much more about you.
Besides, neither your psychologist nor your GP has been plied to the extent your psychiatrist has been plied by Big Pharma, which may run into the tenthousands of dollars each year, for which see e.g. Gwen Olsen, who started as sales representative for Big Pharma. (And Big Pharma gets it all back from the psychiatric prescriptions.)

[3] To indicate how utterly mad all psychiatric writing about what these cognitive misfits call "chronic fatigue syndrome" is: They have to my knowledge almost never clearly and experimentally posed the question how many patients do make up symptoms - they normally pretend all do, but leave even that in the dark by writing systematically about "patients", very much rather than about "80 % of the patients we researched" etc. And they pretend all do, because that is what they start from: the belief that 17 million persons rather are in the dole, exceedingly poor as that is, for decades, than work. (In case you ask: Yes, there are medical doctors, psychologists, lawyers, mathematicians, professors in history, and even psychiatrists who have the disease, but to any normal psychiatrist that is as nought: they are all insane, and do not know this, and only psychiatrists are healthy.)

[4] It also has rarely been confirmed, and the Dutch journalists much rather serve the mayor than the truth: ME in Amsterdam has been largely ignored by the Dutch, indeed just as almost no Dutchman was in the resistance when there was war, and almost every Dutchman was in the resistance as soon as the war was over. Well... my parents and grandparents were in the real communist resistance, while I, who is not a marxist or a communist, resisted the sick and illegal bastardy that rules Amsterdam, but indeed I failed because I got no help, and have no money, and no health.

And please note that the 10 Billion euros a year that are turned over on Dutch soil only in soft drugs are firmly based on the parliamentarian Van Traa report of 1996, that is also on my site, while drugs are very rarely discussed, and never honestly, since Van Traa died, also in 1996, either because he was murdered or because he got an accident.

This is quite odd, for if soft drugs would be legalized, some 10 to 20 % of tax money could be made, which would be 1 to 2
Billion a year, that in turn - 1000 to 2000 million euros a year, just by taxing formerly illegal drugs - is easily sufficient to solve most of Holland's current economic problems.

But no one sees it this way: Not the judges, not the district attorneys, not the police, not the bureaucracy, and certainly not the politicians. I think they all profit, perhaps not in a monetary way, but by being part of the corrupt system.

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)

2. Malcolm Hooper THE MENTAL HEALTH MOVEMENT:  
PERSECUTION OF PATIENTS?
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)
9.
Maarten Maartensz
Resources about ME/CFS
(more resources, by many)



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