September 10, 2010


ME + me :  Links about the 1st XMRV-conference


    "The mild and the long-suffering may suffer forever in this world. As long as the patient will suffer, the cruel will kick."
     -- Sidney Smith

I continue being not well, for which reason I have not yet written more on the DSM-5TM  and there also was no Nederlog yesterday. I also wanted to write a bit more about psychiatry and about Cargo Cult Science and pseudoscience, but these things too have to wait till I feel a little more physically capable than I do now.

So for today there are just two links relating to the 1st XMRV-conference that took place this week, namely these

The Video-link starts the first of a series of the whole Q&A session, where the rest of the series gets started automatically.

The series in this link (all parts) come with English subtitles, which is probably quite useful for people with little or no English and people with brainfog. It's not necessary at all if your English is fair to good and you are not brainfogged, and it has the setback that in the undertitled video the speech and the speakers are not in synch, but it is good someone did take the effort, since there are more people with ME with little or no English than without.

I have seen and heard it all, and found it interesting, but if you are not at least reasonably well informed about both ME and XMRV, it'll probably be mostly very boring. I did not think so, and one reason is that I found it rewarding to see and hear a room full of mostly bio-medical scientists discuss ME/CFS as if it is a real disease.

There is much patients with ME/'CFS could say about it, but then they did, and some of is in the second link, which is the start of a long thread, that again will only interest those who are at least reasonably well informed about ME.

I have read it all, at least till today. Speaking for myself, that was mostly a waste of time, but then I do know a fair amount of science and have been at a fair amount of (supposed or real) scientific conferences. It is quite possible, indeed probable, that readers with a serious interest in ME but without my background do find some interesting remarks and clarifications in the linked thread, but if so, one has to skip through rather a lot, including some nonsense conspiracy theories that are launched from nowhere at all by somebody who probably is a well-known half-famous therefore anonymous US ME-personage, who writes on PR-F as "George" and as a dog, with enormous amounts of - what I suppose is meant to be funny - doggy language, such as "Slurp", "Slobber", "Four Paws Up" and much more, that make on this psychologist, who has been skimming this for several months now, the determined impression of being very bad style (I'm a grown-up scientist pof 60, not some 5 year old playing fames) or else quite neurotic.

In any case "George", who is a female it seems, has concluded from no evidence that "George" deigns to give, that what is really going on besides the scenes is a fight between WPI and the NIH - all under the title "A Dogs Opinion on the whole mess" and without any evidence whatsoever.

I find it pretty annoying that there is one anonymous female, apparently in the US, who is someone in ME-land, quite a few US-folks seem to know (but I don't), who (truly or falsely) pretends to scientific knowledge and to knowledge of what is going on behind the scenes, but who writes month after month after month in the persona of a dog, as if from an asylum.

It probably all is meant well, but it makes a decidedly disturbed impression on this elderly Dutch psychologist, who really knows but two good reasons for an adult to pretend for months that one is a dog.

Indeed, this is part of the reason I did not write a Nederlog yesterday: Patients with ME in the US apparently love being spoken too by an adult who pretends she is a dog - and I quote fragments that meanwhile have passed me hundreds of times: "slurp, slobber, for paws up, Mommmmmmm, I'm homeeee".

This is quite disquieting if one is oneself dogtired and in pain, but no dog and not writing under the delusion or pretension (what for?!) that one is a dog, and this is someone part of one's intended audience seems to take serious, for reasons that cannot be divulged because this would endanger this doggie, sorry, human person pretending and writing as if she is a doggie.

Tiresome, very, very tiresome, in a sane adult, and not really good pr for patients with my disease either.

Anyway... the really interesting thing about such a conference are the papers, and these so far have not been published, it seems. For which reasons I have spent part of my energy and Nederlog on but dogmatically stated doggie-originated conspiracy theories, presented without the least bit of relevant evidence.

Tiresome, very, very tiresome.

-- sep 11, 2010: I mistakenly called dr. Stoye "dr. Boyle" and have undone my mistake and some other typos, incidentally typical for my disease as the interested neurologist can also find on PR-F: On my hypothesis e.g. one's ability to speak and write grammatically depends on there being "above" the sentences and terms one writes several simultaneously ongoing "control threads" one isn't consciously aware of - some of which fall out or work intermittently only, in my case, and depending on how miserable I feel, possibly because of hypoperfusion. (Or such is my own hypothesis of some twenty years standing on my own cognitive failings with spellings and programming, that I do quite well if not PEM'd, as I usually am.)

I'm sorry, but I do find the above sketched nonsense annoying or disquieting (rather like I find loudly drunk "playful" persons in my neighbourhood the same), also having visited disturbed persons in asylums. And this is one of the things that annoys me: Having to wade through this rather mad sounding highly contrived in the end very childish "writing style", for months on end, by somebody who is supposedly adult and who claims, implicitly at least, to be scientifically quite knowledgeable, and who is treated on the PR-forums as if she (or he or it, viz. George the doggie) is someone to be taken serious in matters of science and policy.

Could you please write as if you are sane and a human, and not as if you are a dog, if you know in your mind that you are not, at least?! And since this also struck my mind: if you are a cynic - cave canem! - please have the guts for once to speak up as a human being, and explain the cynical cause(s) for this very tiresome ongoing and ongoing childishness, "slurp, slobber (grins, four paws up)".

And since I raised the topic: Do I agree to such conspiracy theories? Not at all without good evidence - and if the supposedly good evidence were presented by someone who for months has pretended in writing to be a dog, without any rational reason that I can see, and without this being humorous, funny, or witty in any way (I exclude the braindead), I could not take it serious even it were.

But perhaps I should make one serious point, having seen all of the videos about the Q&A session, in which the chairman Stoye at a certain point answers a fairly urgently phrased question by Mindy Kitei, namely to the effect that "nobody" whose research into XMRV ended with finding nothing "wanted to find a negative".

I care to differ, but I will explain in a moment why I think dr. Stoye said what he said:

It seems to me that the CDC-study, the KCL-study and the Radboud-study were set up to find negatives, and indeed each of these studies was - presumably - headed (in practice if not in theory) by main proponents of the psychiatric pseudoscience about ME/CFS, namely resp. Reeves, Wessely and Van der Meer - of which, moreover, at least the last two had declared publicly their bias (or certain-sure knowledge about their own "research") that nothing would be found. See e.g. my On the postmodern falsifications in Wessely & McClures BMJ-editorial that shows quite clearly and conclusively that professors McClure and Wessely were lying, spinning and misleading that editorial, and far from forthright, honest or scientific, as also argued in my Wessely's Cargo Cult "Science".

Now why did dr. Stoye say this, and indeed why did dr. Stoye do his best to prevent that there was in that public Q&A-session any discussion about what may be very fairly called "the politics of ME/CFS", that I addressed e.g. in Williams vs White + Feynman vs Wessely?

I think because he wanted to prevent public quarreling, and indeed possibly court cases, e.g. about reputations and future careers, between what do seem to me to be opposing groups of scientists, namely the real bio-medical ones and the psychiatric pseudo-scientists, including some psychiatrically tamed or conned retrovirologists, of far lesser reputation than e.g. dr. Alter.

And it seems to me very wise, for working scientists interested in research funding, not to quarrel in public, not even with persons they can prove, eventually, in a court, that they are scientific frauds: A real scientist - who does want to remain a real scientist - proves that real frauds are real frauds by real research, and then lets the deserved implications for reputations be drawn by others.

All that seems to me to be true and also wisely done by dr. Stoye, with one proviso:

While I admit that he could in rational fairness say little other than he said, whatever he really thought, people like me, who are scientifically qualified and have been ill too long to make a chance on a scientific career, are much more free to say publicly what they really think.

Which is the reason I did so again - while I also again reiterate that for bio-medical research scientists on the side of the WPI, or simply on the side of real science, it is quite impossible to fully and honestly discuss the politics of ME/CFS in public, and they shouldn't asked to do so either.

But for patients it is different, althought they should be aware of the situation: Only professors Reeves, Wessely, McClure, Bleijenberg etc. have an interest in provoking Dr. Mikovits or dr. Alter into saying what they really think, deep down inside, about the persons, politics or morals of the Reevesians and Wesselytes and their associates.

Dr. Mikovits and dr. Alter simply can't publicly say the things thtat I can publicly say e.g. about professor and Mrs Wessely or professor McClure, even if they were to agree with me: It is both in their interests, and indeed in my interests and the interests of anyone with ME/CFS, that the real bio-medical scientists on the side of persons with ME don't speak their minds about the persons and policies of their opponents, but instead refute their pseudoscience by real bio-medical science.

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.

Maarten Maartensz

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