February 22, 2011


ME: CAA, PACE-Trials and programming

I am around, but in part otherwise occupied and in part not much inclined to write Nederlog. Then again, I got a lot of hits the last days, for some reason, which suggests - what I don't really believe - that the less I write the more I am read.

Anyway... just a few brief items to keep things documented.

1. CAA
2. Pace-trials
3. Programming

1. The CAA

For those naive about ME (the disease): I don't mean the CIA but the CFIDS Association of America, which is the American patients' organisation for persons with ME/CFS, that in the US seems better known as CFS. You'll find its website under the link in this paragraph.

The CAA is neither well known nor popular. That it is not well known I just found out by googling "CAA": Not to be found by that acronym in the first three Google-pages...

By contrast, if I type in "Maarten Maartensz" I find my websites generally on top of the list, that tends to be quite long because there used to be very many persons called Maarten Maartensz in earlier ages in Holland, and as there also are lots of Dutchmen interested in genealogy, the name crops up often - and besides, there are at least two other writers who have called themselves by that name, and also an English writer of Dutch decent who called himself "Maarten Maartens".

So while I never did anything to make myself well known - for two reasons: (1) I am ill and can do little and (2) I am not a histrionic person who loves being in some public limelight - I am very much easier to find on the web than the CAA.

Then again, their website looks oldfashioned, which I personally do not mind at all if the content is interesting, or if it is a private site, but this is THE site of THE organization that is supposed to defend the interests of persons with ME who live in the US - and it does not look interesting or inviting, while the information it carries is uninteresting and all of it looks thoroughly boring (and ugly besides).

Now one possible reason that I did get rather a lot of downloads the last days is that I wrote on February 18 among other things that one of the things that needs to be done to achieve something for persons with ME is

Change of the leaders there are: The forums are ill led, and so are the charities and patients' organizations I have seen, the latter with a few exceptions and some excuses (such as the lack of strongly supported biomedical explanations from ME and the relative success of pseudoscientists, especially in getting power over governments' decisions as regards ME).

So I have arrived at the CAA. I do not know much about this, but what I do know about it does not make it seem attractive or efficient, except in keeping its staff employed and in pay - where one of the striking things is that the director of the CAA, one Kim McCleary, receives $180.000 a year for her Good Works, which as it happens is more than the Dutch PM gets.

To me, that is totally ridiculous, unless the organization for the Good Works has as its real end to keep its staff employed and very well paid indeed, in which case Miss McCleary, whose yearly human worth in US dollars is in the vicinity of the 18-fold of myself, is to be sincerely congratulated on netting this yearly salary for 20 years now, a salary that is surely also a lot more than mathematicians of undoubted genius receive to teach in a university.

And besides this truly ludicrous amount of money for a director of a patients' organization - 3.6 million dollars in 20 years - the one time I seriously dived into what information the CAA has produced to help persons with ME/CFS, I found they effectively supported the Wesselyte professor Peter Denton White, by quoting his lies on the supposed benefits of exercise - GET- with a smiling photograph included and presented as specialist on the disease : See my On 'exercise as therapy for ME' : The patients' evidence, that's anyway quite interesting, if you are interested in the subject of the title.

Quite recently, Ms McCleary let it be known that the techniques used in the PACE-Trials - for which see my ME: PACE-Trials and human degeneracy, that is, a Wesselyte combination of CBT and GET, of lies and deception, of cruelty and sadism - is what she looks forward to seeing implemented on US patients with ME.

Well... here is the beginning of CBS's response, on Phoenix Rising, who let it be known, if I recall well, that before falling ill with ME/CFS, he taught at Stanford University - which is a fine university, of which more below, in another context:

I am writing to cancel my monthly contribution to the CFIDS Association of America via the Chairman's Circle. It saddens me that things have reached this point.

Cancellation of my monthly contribution to the CAA is a vote of no confidence on Kim McCleary. I appreciate that she has been with the CAA for many years, that she has relatives with CFIDS, and that she has worked hard for the organization. Unfortunately, I feel that nothing short of the survival of the CAA is at stake as more and more patients are alienated and support of the CAA by the patient community erodes. Ms. McCleary's ineffective and misleading public responses to the recent publication of the PACE trial results and the barrage of dismissive articles in which she was quoted has been devastating. The CAA was completely unprepared to respond to a study that was no secret with controversial definitions of the disease, controversial treatments and which exaggerated the minimal amount of improvement in a minority of patients that were comprised of those who did not chose to abandon the PACE study, those who did not decline to enroll, and those who were not excluded from participating as they were too ill.

Under Ms. McCleary's direction, the CAA has repeatedly missed opportunities to educate the public, failed to highlight the dismal state of what is being passed off as science and a celebration of "significant improvement" in CFS, and side-stepped making a long over due and much needed public declaration on the important distinctions between chronic fatigue syndrome as defined by the CDC and the Canadian Consensus Diagnostic Criteria. Ms. McCleary's latest comments to the media regarding the PACE trial seemed to do nothing more than express regret that the "interventions" implemented in the PACE trial were too complicated to be made widely available in the US.

You'll find all of CBS's response in the link to Phoenix Rising, where there also are several threads on the subject, including a Poll: How do you feel about The CAA? 101 persons voted when I took this picture today (and I tweaked its appearance a bit to fit my format)

The first three votes are almost certainly of CAA-folks on Phoenix Rising, but apart from that, as polls go, this seems quite convincing. And indeed, if a patients' organization for ME has the trackrecord Kim McCleary and the CAA have, it needs changing a lot - unless, of course, the end of the organization is to provide such noble souls as Kim McCleary with excellent pay, in which case it is a most succesful organization.

Apart from that great humane and moral end: It seems to me the CAA could do considerably better with a director who is not paid twice what a Dutch professor gets, even if he or she is a genius, and more than the Dutch PM receives, who certainly is no genius, while the CAA certainly could have had a much better website (pay a pro a little of what Kim gets) with much better stuff, just as they should not have spouted all the bullshit they have spouted about GET.

And incidentally GET: Here is, from the last link, _Kim_'s (who certainly is not Kim McCleary!) excellent summary of the dangers of CBT and GET and indeed PACE, of which more in a moment (and PWC=PWME=persons with the disease known as ME or also, if misleadingly, CFS):

Cognitive Behavioral Therapy and Graded Exercise Therapy
and you cannot speak of one without addressing the other

!!! Are Dangerous !!!

There are grave risks that it will worsen symptoms for PWC
There are no means to predict who it will harm
It could be you
It could be me

For a mere 10-20% chance of improvement
You risk 100% decline

2. Pace-trials

The literature on the PACE-trials is quite depressing. My own take on it is here

with this summary

The whole PACE-rot is what one gets if one "researches" all "fatigued" individuals as if they suffer from the same disease, conveniently labelled Chronic Fatigue Syndrome, in wilfull denial of the WHO, that calls it ME since 1969, and insists it is a neurological disease, and then applies the results to a subgroup with a serious neurological disease.

This is pure fraudulence, pure pseudoscience, and it has been done and is being done on purpose. See: On natural philosophy, philosophy of science, and psychiatry, in particular the end: Psychiatry is pseudoscience since its inception, and the reason is that there just is not the requisite knowledge of the brain to support almost any of it.

There are quite a few threads on Phoenix Rising about it, some with quite good and detailed criticism (look for posts of Dolphin and Anciendaze, if you are interested), but the brief of it is as I stated it.

Here is just one brief bit by an Englishman who calls himself Wonko, and who seems to see the probable consequences for Englishman quite well: Bureaucratic murder, in my terms:

It's likely that within a few months I will be assessed at best (from my perspective) as capable of attending full or part time 'retraining' for work with a reduction of benefits (as are all pwME that have been assessed so far), and if I am unable to attend or am late then my benefits will be stopped, I will become homeless, and that will be it.

Because according to the Goverment, the health service, the DWP, the media and the general public I'm just a bit lazy and need a kick in the pants to make me better, and just to help make sure I dont have any idea's about appealing etc. the charities etc. that would previously have been able to assist me are having their funding removed or slashed.

That seems to me to be a fair assessment of the prospect, also because the English government won't care, whereas Wessely and White and their cronies will be in states of enduring orgasm, for these types don't need Viagra to keep coming, but keep coming if they see others in pain, misery, being denigrated, scolded, humiliated and destroyed - and if you are in doubt about this, you should read Jung Chang's excellent Wild Swans, especially chapters 15-24. (It is this kind of information about man's inhumanity to man and mankinds native totalitarianism, especially in ordinary men, that is behind my PACE-Trials and human degeneracy and my On a fundamental problem in ethics and morals).

Apart from violence, what needs urgently to be done, I think, indeed if one wants to prevent violence (which to me is justified when one is treated worse than pigs are in Holland) is what I wrote in the PS to my PACE-Trials and human degeneracy:

It becomes important for Englishmen with ME, at least, to come to an agreed upon document they can sign to protest being submitted, subjected, abused or defamed by psychiatric pseudoscientists, and also an agreed upon legal document that insist that any damage done to them in the name of the teachings of pseudoscientists is to be paid by the government. (If the government wants to force ill people, with brain-cancer or ME, into a program of CBT+GET "to teach them to cope with their somatoformic illusions that they are ill", let them sign a document that entitled those forced into this, or their surving family members, to large sums of money for having been made subject to physical abuse.)

3. Programming

The great mathematician Halmos (<- Wikipedia) used to joke that he was a failed philosopher, having started out majoring in philosophy, in which he failed his oral M.A. examinations (I'd guess he spoke too clearly and logically) - and here incidentally he is on the subject of mathematics:

Halmos' view of what doing mathematics means:

Don't just read it; fight it! Ask your own questions, look for your own examples, discover your own proofs. Is the hypothesis necessary? Is the converse true? What happens in the classical special case? What about the degenerate cases? Where does the proof use the hypothesis?

In several senses, I am a failed mathematician, who also failed to get an M.A. in philosophy, although that was not due to my shortcomings as a philosopher, but to the time and the place where I spoke up for real science and real philosophy, namely in the paradise for dumboes and drugsdealers that's modern Holland, and in a university full of yahoos.

In any case, I do like mathematics (especially the more algebraic subjects) and programming, where indeed I am also hampered by ME, in that I see best when I am trying to do these subjects, that apart from and next to exhaustion and muscle aches, there are also higher functions limited in me, that were far less limited before I got ME, and that relate to concentration, and indeed spelling too. (*)

As it happens I am in my third month of B12-supplements - 4*10 mg of hydroxycobalamine, in my case - and it definitely helps me to feel somewhat less horribly exhausted while allowing a bit more concentration.

And as it then happens, me being me, I dive more or less automatically into mathematical or programming subjects, simply because I like it, I am interested in it, I know quite a lot of and about it, and I get much more joy out of a good piece of mathematics than from a TV-series (which goes to explain to some extent why I don't owe a TV since 40 years: I'd rather read maths).

What I know about programming I picked up myself, without any formal education, and mostly from books, and mostly in the 1980ies and 1990ies before my ME got severe because of what happened with ME in Amsterdam, since when I could do some programming, but not much, if at all, and not for a long time anyway.

Lately, feeling a little better, I have been watching and hearing this:

Here is lecture 1 of a series of lectures by professor Jerry Cain that was put on line in full by Stanford - kudos to Stanford! - on the subject of the title.

I like it because it is well done - this is a lecturer who can (**), which I would expect at Stanford, but never got in Amsterdam - and because I formally never did more than part of a course on Lisp ca. 1980 by a guy who didn't know what he was talking about, and part of a lecture on object oriented programming ca. 1985, idem, so I learned all about programming I know by myself (which is the usual course for me anyway, but would have been different if at the time I'd found someone capable of lecturing well on programming in the UvA - who indeed may have been there, but not so as to be found by me).

So I am watching this 2008 course, at the moment in part 6 (viewers start at over 200.000 but are at 10.000 in lecture 12, which still is good for such an abstruse subject, I'd say) and sofar learned that all I learned about programming I learned correctly - which also is to say that as yet I learned nothing from the course except that I know it all, which is nice. ()

What's also fun is that the course - in 2008, at Stanford - is the old style: A guy with a bit of chalk in front of a set of blackboards - no powerpoints, no slides, etc. Just somebody writing formulas and explaining them, and indeed doing it well.

I like this, even if Powerpoint etc. may have its uses: A good lecturer is one by personality, by mental and verbal clarity and by personal presentation, which is the central thing in university lecturing anyway: intelligent folks talking intelligibly.

So... in case you are interested in programming, you might want to check this out, though I should warn you that it is not likely you'll make much sense of it if you don't know how to program at all. In case you do - I suppose you need to know some C, at least - professor Cain's lectures may help a lot.


(*) It is - and one can see that with spelling, not only my own, but also by well educated others on ME-forums - as if (subconscious or superconscious) controlthreads, that keep track of one's grammar and spelling, and one's ability to recall words, are only partially working if at all.

(**) In case you missed it: Play on "Those who can do; those who can't teach", which indeed was very well confirmed in my university education

P.S. Corrections must wait till later.
-- Feb 23, 2011: I corrected some stylistical stupidities and inserted some words at various points to clarify my meaning. There also is now a good post by Hillary Johnson on the subject of the CAA entitled, not unfairly, I think, "Hey, lazy arses!" - and I should add that Hillary Johnson knows a lot more about the CAA than I do, and indeed than most do. (Also, I did not see her post till today.)

So far this year I have kept up with Recent Changes: Summaries of relevant changes on the site.

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

Maarten Maartensz (M.A. psy, B.A. phi)

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