August 29, 2010


ME + me :  Meditation on me & ME + National Archives (British)

As before, I continue being not well, and indeed am pretty PEM'd - exhausted - so for the moment this is just a fairly brief piece. ("I do as I can, not as I want.")


1. Meditation on me & ME
2. National Archives (British)

1. Meditation on me & ME

Yesterday I ended my Nederlog with a very irritated disquisition on the very irritating Awol, who writes since May on both Phoenix-Rising (PR-F) and the MECFS-list the owners of which, CFS since 1998 and Patricia Carter, block me completely from seeing any of their site, clearly because they have much to hide, and ended the whole Nederlog thus:

Finally, my reason to write this out, tired as I am, is that I want to insist, as a person with 32 years of ME, with a diagnosis by medical specialists, with the best possible MA in psychology and an excellent degree in philosophy, that an ME-forum like Phoenix Rising, and a forum like ME-F, and persons like Awol, V99, CFS since 1998, Patricia Carter and Lansbergen do NOT speak for this patient AT ALL, and indeed cannot and should not be taken as speaking, writing or acting for any rational, reasonable well-educated person with ME, especially not with Awols and other trolls vomiting their verbal bitchshit daily over them on public lists for persons with ME, and in the face of anyone reading them.

Well... somewhat to my amazement Cort Johnson, the owner of PR-F, decided to ban Awol's eager assistant V99 from his forum, but did not ban Awol. You'll find Cort's reasons under the last link, and it is true he was considerably more pestered by V99, unfairly also, than by Awol, although V99 very probably only followed Awol's instructions and example.

Since I wrote yesterday about it, here is a little meditation on me & ME:

It so happens that I can see things others can't see, because I am a highly gifted man, with a lot of knowledge, a considerable part of which is relevant to ME/CFS as well, since my academic degrees are in psychology and philosophy, and I also am 60, having had this disease now since I was 28.

It also so happens that I dare to say and write and do things others don't dare to say, write or do, which has been so since I was 7.

For at that age, being the highly gifted son of poor communist much discriminated but very heroic parents, not having much idea that I myself differed rather a lot from the average, like my parents did, I first stood up in school to protest that school was too stupid for me, and proceeded to walk out, with dignity also, which I did some five times, because that's what I really thought and felt.

Since then I have been almost thrown out from the German Democratic Republic in 1964, when I was 14, for protesting there it was a "fascist bullshit" set up ("eine fascistische Schweinerei"), which I also refused to withdraw because I really thought so, and have been removed three times, while being ill with ME, for protesting the politicized, unscientific, levelled, postmodern "academic" "education" supplied at the University of Amsterdam since 1971. To enliven things, in spite of my personal background as sketched, that I kept secret, I was for more than 10 years enthusiastically called "a fascist" and "a terrorist" (sometimes with "verbal" inserted: I can argue really well) by my opponents and indeed by quite a few students who believed my ideas and values merited that, because I dared to insist, in a Dutch university of all places, that truth exists, that not all morals are equally good or equally relative, and that not all human beings - from Einstein to Eichmann - are equals in any useful sense. At the time I dared to uphold this, being ill with ME also, like my then wife, almost everyone else, physically quite healthy also, did not dare to do so - "Holland is a free and democratic country" - but did dare to call me, an individual or a studentleader of a minority student movement, "a fascist" and "a terrorist", which were also the reasons I was removed in 1988 by the Board of Directors of the university: According to them, a man who dares to ask 39 Questions as linked, which I did publicly, while being ill with ME, in the faculty for philosophy, as an invited speaker also, must be "a fascist" and "a terrorist". Judge for yourself!

This gives me considerable leeway in the propaganda on this site against Dutch, English and American pseudo-scientists, as time will show, if I live (for what I have been, am and will be doing is dangerous for persons with a lot of personal power in Amsterdam and no morality whatsoever, while possessed of great cruelty and no control whatsoever), and has also moved me to a number of very radical and unusual conclusions - especially in universally levelled Holland - about human beings, that are for the moment best written out in my "On a fundamental problem in ethics and morals"

So virtually all my life I have myself stood out as uncommonly intelligent and willing and capable of running risks and taking chances very few dared to take, although many of my generation claimed to be Genuine Revolutionaries (and lied), while I am the son and grandson of parents who dared to be members of the Dutch communist resistance against the Nazis, for which my father and grandfather indeed were arrested and sent to a concentration-camp for, where my grandfarther was murdered.

It's about as simple as that, and undoubtedly genetical: My parents and grandparents were in the Dutch Resistance and real - credible, sincere - revolutionaries. And besides, that's also one of the reasons to feel aristocratic not only intellectually, but also as regards activism and morality:

I've been born to proven heroic activists, who dared to do what very few in their generations dared to do, though nearly all claimed when it was too late they should have. And while it so turned out that I myself am much more of a theoretician by inclination, this background is what easily allowed me to be a student leader and also leader of a large softdrugs place in Amsterdam, and also a leader of some other things.

Hence in the end I am singularly unimpressed, and indeed quite a bit disgusted, by most of the quite hysterical activism calls I have seen the last couple of months on ME-forums, as explained by me in my "On infecting and storming blood banks", in Unsere ME-Fuehrerinnen und ME-Fuehrers, in Bloody stupid hysteria + lying and in Alter study and LP nonsense.

Also, I feel quite justified in assuming that quite a few of these calls were either by trolls or by persons with ME duped by trolls, and I get rather irritated at having to see and hear the prose of suddenly radicalized and revolutionized legalese halfwits like Patricia Carter, a type of person my truly heroic and revolutionary father dismissed as "headless chickens from suddenly radicalized petit bourgeoisie".

So that is in considerable part what my function and lot has been and is in the life I am forced to lead:

Speak and write the truth as I see it, even if I am the only one to see or dare it; use my capacities for rational argument and satirical writing where necessary, and as I can find the energy to exercise them; not be as uninformed, as stupid, as ill writing, as fallaciously reasoning, as wishfully thinking as the vast majority; and also try to write out some decent philosophy and logic, since I have thought a lot, and have arrived at quite a few results, ideas, values and formulations that ought to be much wider known than they are.

I also take the liberty now and then to diagnose persons, especially such as are as impolite and neurotic as - e.g. - Awol is: In my considered opinion, having waisted a lot of time on several hundreds of her posts, and having been made a subject of her strong desire to offend all comers myself (<= my On CDC-"science" of July 3) indeed after writing and explaining her very clearly, politely and extensively, which was punished, like anyone who approaches Awol with something that she might look upon as possibly critical of her, with a snub, and a snide comment that I should learn to read better.

Why Awol is like that I cannot start to analyse, though I have a few guesses, but indeed it is my considered grandfatherly opinion she needs to see some capable psy-doctor of some kind, if she is not a troll, given especially that she all the time repeats the same pattern to all, because us psys know that as A Prominent Neurotic Symptom, and my advice is wholly gratis as well. (*)

2. National Archives (British)

If you are intelligent and seriously interested in ME, included the politicking around it, you should read ME agenda's site. It does not look sensational, and the information it has is hardly fun or well-written, but none of that is ME agenda's fault - namely: Most of the documents she gives are not well-written, nor are they about intrinsically interesting subjects, while she writes quite well and clearly, but there is not much of her text - and she has invested a tremendous amount of work and time to collect a great amount of data that is very interesting for those interested in almost any aspect of ME/CFS, while she also has taken the trouble to lay it out well and provide lots of context, links and helpful information. (**)

Therefore, being both intelligent and seriously interested in ME, I regularly go to ME agenda's site, also because it is far too large to read in one or a few sittings and because it is almost daily updated. And today one can find this there (the title is a link to it):

Accessing a copy of MRC National Archives material via PDF


     What is certain is, that when one reviews the postviral
     fatigue syndrome with its epidemic and endemic data, clinical
     features and laboratory results, it becomes plain that this is an
     organic illness in which muscle metabolism is severely affected.
     The latest developments lead us to hope that the agent, if it has
     not been already, then soon will be, identified.

P.S.  As I said, I have only skimmed it for the moment, but I have both noticed and heard that the Behans do discuss psychiatric symtoms in persons with ME. Well... I will look into it, but here and now am quite content to say that (1) they hardly could avoid the topic (2) someone who is ill with ME for a long time and without any help is bound to get some problems and misgivings, e.g. about the goodness or honesty of bureacrats or medical doctors either type may feel pleased to meet by "but if you think that you must be crazy" and (3) the Behans conclusion seems to me to be quite correct, and indeed the correct medical attitude is that one must diagnose and solve the underlying problem and help with all others to the best of one's abilities.

P.P.S. It may be I have to stop Nederlog for a while. The reason is that I am physically not well at all. I don't know yet, but if there is no Nederlog, now you know the reason.


As to ME/CFS (that I prefer to call ME):

1. Anthony Komaroff

Ten discoveries about the biology of CFS (pdf)

3. Hillary Johnson

The Why

4. Consensus (many M.D.s) Canadian Consensus Government Report on ME (pdf)
5. Eleanor Stein

Clinical Guidelines for Psychiatrists (pdf)

6. William Clifford The Ethics of Belief
7. Paul Lutus

Is Psychology a Science?

8. Malcolm Hooper Magical Medicine (pdf)

Short descriptions:

1. Ten reasons why ME/CFS is a real disease by a professor of medicine of Harvard.
2. Long essay by a professor emeritus of medical chemistry about maltreatment of ME.
3. Explanation of what's happening around ME by an investigative journalist.
4. Report to Canadian Government on ME, by many medical experts.
5. Advice to psychiatrist by a psychiatrist who understands ME is an organic disease
6. English mathematical genius on one's responsibilities in the matter of one's beliefs:
   "it is wrong always, everywhere, and for anyone, to believe anything upon
     insufficient evidence
7. A space- and computer-scientist takes a look at psychology.
8. Malcolm Hooper puts things together status 2010.

    "Ah me! alas, pain, pain ever, forever!

No change, no pause, no hope! Yet I endure.
I ask the Earth, have not the mountains felt?
I ask yon Heaven, the all-beholding Sun,
Has it not seen? The Sea, in storm or calm,
Heaven's ever-changing Shadow, spread below,
Have its deaf waves not heard my agony?
Ah me! alas, pain, pain ever, forever!
     - (Shelley, "Prometheus Unbound") 

    "It was from this time that I developed my way of judging the Chinese by dividing them into two kinds: one humane and one not. "
     - (Jung Chang)


See also: ME -Documentation and ME - Resources

P.P.S. ME - Resources needs is a Work In Progress that hasn't progressed today.

(*) To make this clear as well: Personally, I don't mind being criticized, and I have been called publicly, and often, much worse things than almost anybody on ME-forums. Indeed, a person who does get angry about some moral point often has my sympathy, even if I cannot agree with them rationally and factually, because I am disgusted by the common spinelessness of the vast majority of men and women - which to me is not reprehensible in a totalitarian country with a torturing police, but which to me is reprehensible in countries where civilians do not run such risks for daring to say publicly what only a minority agrees with, or even is capable of seeing. But I do mind being verbally vomited neurotically in the face by someone who could be my granddaughter, and who has pretensions and illusions far beyond her intellectual and moral capacities, while being systematically rude and fallacious in reasoning.

(**) ME agenda was one of those extra-ordinarily rudely and neurotically criticized by Awol on ME-F, as is usual there with the active permission of CFS since 1998 (can I really believe that?!) and the former legalese eagle, presently grandmother located in living hell, Patricia Carter: Awol insisted that ME agenda has no place on ME-forums. Apparently CFS since 1998 and Patricia Carter feel just the same, just as they o so sincerely, bravely and rationally feel that a person like me must be blocked access to any view of all they desire to do and write there "for the sake of persons with ME/CFS", if you believe that.

Well... persons like CFS since 1998 and Patricia Carter, who want me not to witness their writing, have much to hide, for which reasons I find it very hard to believe they have ME/CFS or that they mean well for persons with ME/CFS, whereas I am positive they have done nothing of any value for any person with ME/CFS that I am aware of.

Even the forums they now are the dictators of (an Awolese term the admins must love) were not created by them and would have gotten nowhere without _Kim_, whom I still believe to have been treacherously and meanly ditched by CFS Since 1998 between May 28 and June 5, and whose health since seems to be worse than it was before. Finally, I have never read any by either of these admins, who shouldn't be admins and who quite possibly have no ME nor CFS, that I considered intellectually, stylistically, scientifically, or morally of any positive quality.

So once more: CFS Since 1998 and Wildaisy aka Patricia Carter: You can't do it; you are not fit for what you are doing as "owners of an ME-forum"; you could be having far more fun not doing it; so why not hand over the ownership to a couple of people who are capable, and who have shown themselves, unlike either of you, to be able to write? There are, on "your very own forum", quite a few US-citizens who I am firmly convinced could do better than you. Thanks for doing the right thing, guys!

Maarten Maartensz

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