October 4, 2012

ME: Ending Nederlog| Last words - Laatste woorden| My eyes and M.E.


1.  Ending Nederlog

2.  Last words | Laatste woorden
3. M.E. and my eyes

PHILOSOPHY: But what's your job? There's no harm in asking that.
LUCIAN: I'm an anti-cheatist, an anti-quackist, an anti-liarist, and an anti-inflated-egoist. I'm anti all the revolting types like that - and there are plenty of them, as you know.
PHILOSOPHY [smiling]: Well, well! You're quite an anti-body, aren't you?
LUCIAN: I certainly am. You can see why I've got myself aso much disliked, and why I'm in such a dangerous situation. Not that I'm not an expert pro-body too. I'm a pro-truthist, a pro-beautician, a pro-sinceritist, and a pro-everything that's pro-worthy. But I don't find much scope for exercisting my talents in that direction, whereas thousands of people are always queuing up for the anti-treatment. In fact I'm so out of practice as a probody, that I dare say I have lost the knack of it by now - but I'm a real expert at the other part of my profession.
PHILOSOPHY [seriously]: That's bad. They're opposite sides of a coin, as it were. So don't specialize in one at the expense of the other. They should merely be different aspects of the same fundamental attitude.
LUCIAN: Well, you know best, Philosophy. But I'm so constituted that I can't help hating bad types and liking good ones.
(From: Lucian Fishing for phonies, in de Turner-vertaling, p. 177-8)


I leave the above quotation standing for the moment, since I like it a lot, and it also describes me - or an aspect of me. (See my Spiegeloog-column, for one example.)

As I suggested in the previous Nederlog, I will - for the time  being, at least - end Nederlog and replace it by something simpler, and this is mostly because of my eyes.

Here is the summary of how, when and why:

This will probably happen at October 8, after some 8 years of Nedernieuws and Nederlog, one year after my definitely giving up on XMRV as a possible tenable hypothesis or correlate of ME/CFS (<- link to my M.E. Resources, with much scientific  information) and three years after learning about the article in Science, by Lombardi, Mikovits, Ruscetti et al. that started it all.

Before that I had in fact not paid much attention to ME/CFS in medicine, psychiatry or psychology, because I did not have fast internet until the summer of 2009.

Besides, from 1988, when I first learned about ME, ten years after getting it, and also was first medically diagnosed with it, I had read and heard what I considered mostly nonsense or prejudice or pretense from medical and psychological people (which I can judge fairly because I am a psychologist and a philosopher of science), and indeed also from patients, and my own position until learning about XMRV and ME/CFS in the Science paper had been that it was better for me to wait until real scientists had puzzled it out, and spend such health as remains on things I know a lot more about, such as philosophy and logic.

What I learned from 2009 onwards left mostly a bitter impression.

From 1988 onwards psychiatrist and clinical psychologists had been systematically lying about ME/CFS, pretending to know that they can explain any unexplained disease: That is all madness - "neurasthenia", "somatoforming", "hypochondria", "dysfunctional belief systems"  according to these liars and frauds, who are in fact hunting for patients' money using pseudoscience and bullshit and PR-techniques instead of real science, harming patients on the "primum nocere" principle, to further their own financial and career interests, while the patients mostly claimed to know better - which I admit they do in the sense of really having an unexplained disease, especially if they fit the Canada Criterions and started with EBV, as my ex-wife and I did, in the first year of our university studies - but often supported that with prejudice or nonsense, and also quite often pretended knowledge of science they did not have. (There were and are exceptions, of course.)

On the bright side, I learned to know a few quite amazing persons; on the dark side, I learned there is probably little hope for me to learn the cause and get treatment, unless I get very old, and it is likely, especially if the socio-economic crisis lasts or gets worse, that many patiens who are genuinely ill with ME/CFS or FM (Fibromyalgia) - and there are millions of these in the world, even by conservative estimates - will have to face extreme difficulties, especially with the bureaucracies of the dole and the state, and with psychiatrists and psychologistsn and the DSM-5 (for which also see Suzy Chapman's excellent site Dx Revision Watch).

Here is a more extensive exposition, with quite a few links, about Nederlog and the reasons for ending it:


1.  Ending Nederlog
I intend to end Nederlog because of my eyes: It is too much of a strain on my eyes and my health, because with my eyes - keratoconjunctivitis sicca, possibly as part of Sjoegren's Syndrome - it is hard to look long at a computer screen with much white or light colors, and having sore eyes makes me sleep even less than I do anyway, even with sleeping pills.

Let me say a little in this section about what Nederlog was, and indeed is, but will be discontinued soon, probably October 8, and in the next section say some abou what I will do instead.

Nederlog started in January 2006, and continued Nedernieuws, that started in August 2004. The purpose of Nedernieuws was to write about the Dutch news for my brother (who doesn't live in Holland) and anyone else who might be interested.

Nedernieuws was mainly about Dutch politics, including the murder of Theo van Gogh, who I had known personally (for Dutchies see the interview I published with him), and about Dutch events that were for some reason of interest to me. It was all in Dutch, and often not a little satirical. Parts of it still get read regularly by quite a few readers, and indeed I have a quite original point of view and way of phrasing it.

Nederlog came about because I felt too much constrained by writing about Dutch things: I wanted to write about anything that interested or concerned me, and did so, mostly in Dutch but sometimes in English, from 2006 till the beginning of 2010.

It had quite a few more subjects than Nedernieuws, and was rather often not a little satirical, but more often serious. There are a lot of them in Dutch - more than a 1000 - and they give a fair representation of me talking about things that interest me, because I like them, dislike them, or concern me in some way.

Nederlog was also meant as a place to defend myself against especially the Amsterdam bureaucracy, that has maltreated me and denied and destroyed my human rights for various reasons - but as I said, it could and did branch in many directions and covered many subjects, mostly in Dutch.

In the beginning of 2010, having learned October 9, 2009 about the Science article by Lombardi, Mikovits, Ruscetti et al. that there was a correlation between XMRV and ME/CFS, I switched to writing Nederlogs mostly in English, mostly about ME/CFS in various aspects, since I had mostly avoided reading about it since about 1994, having been thoroughly disgusted by reading the Ph.D. thesis of Bleijenberg (also a psychologist, like I am, in terms of academic degrees), which I thought and think utter rot: Scientifically, morally, stylistically, humanly.

As I did not have fast internet, but only a slow telephone modem, I could not use internet effectively until the summer of 2009, when I did get fast internet. This enabled me to find out a great lot about ME/CFS and about the politics around it, that I had not known before.

Initially the Nederlogs were also meant for "the patient community" on Phoenix Rising, but I left that forum in May 2010, disgusted by the bad moderation and the trolls its owner Cort Johnson allowed and protected, and not wanting my name and site somehow associated with it as if I supported it, and also soon was thrown out of mecfsforums, because I disagreed with an insane person who tied a rightwing philosophy together with neurasthenia as the cause for ME/CFS.

The real reason was probably that the owners of these forums wanted to get rid of a real psychologist and a real philosopher of science, to do or allow their own kinds of trolling, misinformation and manipulation for their own interests.

Much of that was health-politics, which is about power and money, which is what a lot of medicine and pharmacology is really about: There is an enormous amount of money to be made from sick people or their insurances, if one has little or no conscience, and is willing to use propaganda and PR (Public Relations), including trolls and intentional misinformation and disinformation, as happpened a lot on patient forums, and as is also, as I found to my initial amazement, the core of the DSM-5 and much of psychiatry (which is not a real science but a pseudoscience, even if there are psychiatrists who mean well and do well, as is also the case - but not because of the science they know: See the series on the DSM-5 I wrote in this context).

One of the subjects Nederlog since 2010 was about, if not the most, was XMRV, since I initially believed that the Science study was real and honest, and had established good evidence for a correlation between XMRV and ME/CFS.

It was immediately clear to me - my main interests in life have been philosophy of science and mathematical logic, and general philosophy, in which I am a scientific realist - indeed as it was not to many patients with ME/CFS that a correlation is not at all a causal explanation (as I wrote also immediately in Nederlog, to little avail), but I did believe it strongly merited more scientific research.

What was also immediately clear to me, having my interests and a lot of knowledge in those fields, that it made no sense for me to read up on XMRV or virology, simply because virology is a real science about which I knew (and know) very little, because it never had interested me.

This kept me from taking part in many discussions of patients and trolls on forums, where the position was pushed that XMRV was the cause of ME/CFS, which I knew to be nonsense, and quite a few patients-or-trolls did an enormous amount of posturing that they understood everything that merited knowing about XMRV, and that those who disagreed with them were "using inappropriate language" at best.

My reason was that I knew that I did not know, and that I had neither the taste nor the health to read up on either XMRV or virology: I thought real scientists should settle what was the case, and that I was not qualified to pronounce on virological matters.

I did punch holes in one of the first "studies" that claimed XMRV did not exist, by Wessely and McClure, but did so, quite correctly also, on logical and methodological grounds, since they far overplaid their hand: They claimed non-existence on what was effectively a small study that failed to support the findings of the Science paper, and on the basis of "patients with ME/CFS" produced by Wessely, that in my estimate were very unlikely to have what I have (and I myself have three medical diagmoses of ME/FM and have the disease since or not long after I got EBV on January 1, 1979).

Also, I did not follow most of the discussions among virologists about XMRV, such as happened quite often and in quite a lot of detail on ERV's site - in fact by a Ph.D. student virology, Abbie Smith, who disbelieved the Science paper from the very beginning, and was not afraid to say so, in sharp language also.

My reasons were again that I knew virtually nothing about virology; that I was ill; that I had other interests; and that it was a matter virologists and real medical scientists should settle, to which I had nothing to contribute, with one exception: I can rationally weigh and judge logical, methodological, statistical and probabilistic reasoning.

After the fact, it is likely that (1) had I read ERV's site sooner than I eventually did, in the beginning of October 2011, then I had earlier doubted the XMRV - ME/CFS correlation, but as likely that (2) my own opinion had made no effective difference, for the sound reason that virology is not my specialism at all.

In any case: Eventually I did read ERV's site precisely a year ago now, in the first days of October 2011, and very quickly concluded, indeed like many virologists had by then concluded, that the Science paper by Lombardi, Mikovits, Ruscetti et al. was no good science, and that there was no correlation between XMRV and ME/CFS.

This I wrote out in Nederlogs of October 4 - October 8, giving most of my reasons in the last one. Since then a year passed in which the paper was retracted, by the editors of Science, other papers were retracted, the Blood Work Group's strong negative result was published, the Lipkin study was done and published, and the end result is that XMRV is laboratory contamination and has nothing to do with ME/CFS, and also not with other diseases it was linked to,  such as autism, notably by dr. Judy Mikovits.

After October 2011, my main interest in things related to ME/CFS shifted to psychiatry and the DSM-5, for which see my 
series on the DSM-5.

Then in May-June of 2012, meanwhile aged 62, I started to get serious trouble with my eyes, which now have ended any realistic chance of maintaining Nederlog as I did since its inception, even if I wanted, which I also do not really do, given the health I have, which is not good, and given my real interests, which are not journalistic but philosophical and logical, and given also that personally I have no chances to fear more trouble with the Amsterdam dole bureaucrats, having a legally useful letter to that effect, and being of pensionable age in 2 1/2 years.

Also, I have meanwhile lost any belief - one I anyway never had seriously - that any "patient community", as long as it is open to anyone who is anonymous, can do anything much useful for patients with ME other than as a place to make social contacts with such people. The rest is - Hume's phrase - sophistry and illusion:
"When we run over libraries, persuaded of these principles, what havoc must we make? If we take in our hand any volume; of divinity or school metaphysics, for instance; let us ask, Does it contain any abstract reasoning concerning quantity or number? No. Does it contain any experimental reasoning concerning matter of fact and existence? No. Commit it then to the flames: For it can contain nothing but sophistry and illusion. " [N35]
Collectively, these are good reasons to stop Nederlog, though the main reason is the practical one that I do not have the eyes to be able to continue as I have done, even if I shifted subjects.

Therefore my intention is to terminate it around October 8, which is 1 year after I gave up on XMRV and 3 years after I first learned about its purported correlation with ME/CFS, and only add a couple of things relating to the demise of XMRV.

So then what?
2.  Last words | Laatste woorden

The plan I have, what with the eyes I have, is two-fold:

A. To mostly freeze my site(s) as is

My sites, as they are published, are about 400 MB, mostly text in html, with thousands of files and thousands of hits every day. The main subjects, since the beginning on November 11, 1996, are
- Philosophy
- Logic
- Computing
- Myalgic Encephalomyelitis (aka ME/CFS: See ME Resources)
Most of the site is text, in html, and most of the text is mine, though a considerable part of that is html-formatting. Even so, I wrote a lot, and could do so because I always could write very easily and very fast.

Since 2009 I have not spend much time on the rest of the site, and presently I lack the eyes to do so, for which reason I will freeze it: I will not add anything, except perhaps, if my eyes permit it, better formatting to the Philosophical Dictionary, because that is, taken together, a good survey of many of my philosophical positions.

This also applies to Nederlog and Nedernieuws, as outlined in the previous section.

B. To initiate Last words | Laatste woorden

This will be a replacement for Nederlog, that is: about anything that interests or concerns me, with two or three differences:
(1) The formatting will be simpler and different, because of my eyes: If I write at all for my site, as long as my eyes are not a lot better than they are, I need to do it in simple html with a dark background.

(2) It will only be added to if and when I fairly can or feel I have to - and the last eventuality covers only legal difficulties or important events.

(3) It will be in both Dutch and English, like Nederlog, but it is quite likely I will mostly return to Dutch, since I am Dutch.
The last is still somewhat of an open decision for me, but the likelihood is that I will write more Dutch. The reasons I did not after 2009 were mostly that (i) I wanted to reach more people with ME/CFS and (ii) most of the things that happen in Holland, politically and in the media, are not at all to my liking, but then again, I do have a fair amount of Dutch readers, who do read my Nederlog and Nedernieuws, also of years ago, or my Multatuli-section, and I do not dislike writing in Dutch. Besides, I do not know of any Dutchman who did and wrote as I did and wrote, with the possible exception of Multatuli but then he was not ill, nor did he set out to be a logical philosopher when he was 18-20, as I did.

The name of the new item on my site is a bit of a pun, namely on the fact that I am getting older and that it will effectively be the last words that I do add to the site (especially if my eyes don't get  much better).

If I can help it, and if my health doesn't get worse, and also if the political situation doesn't get worse, I do intend to live on, and to read and write quite a lot more than I have done so far, for I think there is much I can write that will be interesting or useful to some, and there is much to read and to ponder.

But one important reason for me to end Nederlog is psychological:

As Nederlog evolved - and note that on my hard disk it covers nearly 7500 items, taking 160 MB, although I should add that what's on the site is probably in the order of 5000 items and 110 MB, most but not all html - it got to be a habit to want to write one each day if I could.

If I write I always write fast and easily, being always able to enter "the flow" but with my health, also with good eyes, it often was difficult to do, and something of a felt pressure, that I now want to get rid of: I want to break the habit, to help my eyes.

Another important reason for me to end Nederlog is the format of Nederlog:

It is html, and has evolved through quite a few WYSIWYG html editors, without my ever taking the time and trouble to regulate it with style sheets, and it is anyway not as good html as it should be, nor easy to maintain even if one has good eyes and good health.

And what I need with such eyes as I have is basic html that takes minimal trouble to maintain.

So that is the end, although I do not know what form it will take. There will be a link and transition to LAST, as I will probably call it, from the last Nederlog, and this then, for the time being, will be the only part of the site I will add to, keeping the rest of the site as is, until my eyes get better. (There is some hope and chance they will improve, since they have been improving some, but the condition is to do only a rather small percentage with a computer screen of what I have been used to since 1987.)

3. My eyes and my M.E.
This is mostly as the last time, and I repeat it to support the above; because it may be useful to those who have similar problems (there are bound to be some, with ME/CFS also); and because I like to repeat that what enabled me to write this, and to write the last month on a computer, is Ubuntu 12.04, that allows me to have most of my screen black, which is very helpful:

My  eyes are a bit better - though indeed far from good - probably for two reasons:
(1) I found a better way to administer Duratears
which is "the appropriate medicine" for what I have, but quite hard to properly administer to oneself, which is what I am forced to do, living alone, and having been denied all help for decades now, in spite of asking.

Incidentally: If one searches the subject, one finds pretty authoritarian prose by some of its suppliers. As a patient you must do this, and you mustn't do that, and so on for a long list, that in fact are all quite difficult to do, especially if one lives alone, but also if not. I think it is mainly for legal purposes: It is not to help the patient, but to help the pharmaceutical suppliers.

Indeed, if these wanted to do so, they would supply the plastic bottle with an U-shapped dropper that fitted on top of it, to make administration of the drops easier. As is, one may only hope one's chemist sells these items.
(2) Ubuntu allows me to have most of the screen mostly black most of the time.
This I have explained before, and should be of help for people with eye problems like mine, so I link it again: , as I explained in on Sep 17 (check it out if you have my type of complaint!).

This feature of Ubuntu really is a _great_ help for me, and I could not have written this, or anything the last month, without this possibility, which does NOT exist on MS Windows in any version, and not by a large margin either.



Maarten Maartensz

P.S. My eye problems

                  PS: Any necessary corrections have to be made later.