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  Mar 17, 2012                  

me+ME: PR, groupthinking and Goffman + Mach on HGRV


"Orwell marked this passage in a copy he gave to Geoffrey Gorer, telling him that it was the key passage" and that "all the pigs were in agreement on this point, even Snowball and Napoleon:"

'Comrades!' he cried. 'You do not imagine, I hope that we pigs are doing this in a spirit of selfishness and privilege? Many of us actually dislike milk and apples. I dislike them myself. Our sole object in taking these things is to preserve our health. Milk and apples (this has been proved by Science, comrades) contain substances absolutely necessary to the well-being of a pig. We pigs are brain-workers. The whole management and organization of this farm depend on us. Day and night we are watching over your welfare. It is for your sake that we drink that milk and eat those apples.'

"War is peace. Freedom is slavery. Ignorance is strength."
-- George Orwell (§)

Here is a little more on things related to ME: The first part gives some background on PR and on Goffman, and the second has some background on HGRV compiled by Tony (not: Ernst) Mach.


1. On PR, groupthinking and Goffman
2. Mach on HGRV

1. On PR, groupthinking and Goffman

Yesterday I considered, next to the latest on ERV on XMRV, the WPI's Annual Report, which I think I considered fairly, namely by indicating that it is PR (Public Relations), that one cannot avoid in contexts in which the WPI figures, for which reason I was not really satirizing it (if you think I did, read a bit more on my site), but which I cannot take seriously, simply because posturing and misleading are its essence, for which reason I concentrated explicitly on one of its most enticing subliminal arguments (for straight males, mostly).

Today, a little more on PR and groupthinking - and I give mostly but not only links to relevant Wikipedia articles.

My reason to compile the above list of links is that I believe these subjects are far more important to patients than they think, or indeed would like to think, and that most patients are so frightfully naive about this and about real science that "the community of patients" (itself a PR term for a fiction) can be played by the professionals - and by their carefully anonymized o so very nice and kind and correct and respecftul and "our community"-praising sock puppets - that are operating on and around health markets, for money and a career, like so many fools. (*)

And my reason to include a better-than-real image of comrade Stalin is that I was brought up in a communist family, where Stalin counted as the Leader Of Progressive Mankind and as Genius Among Geniuses until 1956. In fact, my first disenchantment with socialism dates from those years: I did not approve that Our Beloved Leader seemed to love to see his own picture everywhere. Also, it balances yesterday's illustration. (**)

2. Mach on HGRV

If you know a little of physics or philosophy of science, you know some about Ernst Mach, who was an Austrian physicist who influenced Einstein and the rise of logical positivism (and who also much annoyed Lenin, but that's an aside).

This is not about him, but about Tony Mach, who seems to be German and to have ME/CFS, and who has a blog called Parakoch, on which he writes about ME/CFS.

The blog is interesting, at least in case you have ME/CFS and are interested in science and thinking for yourself. Mr Mach is and does, and that last feature has not contributed to his popularity on several ME/CFS-forums.

Lately, in January and February mostly, he did something I have never done myself: He dived into the XMRV/XAND/MLV/HGRV story and publications, to try to find out what is the case.

If you go to Parakoch, you find a table called HGRV Post-Mortem with at the bottom

The Study

and rather a lot more, such as (among others)

5-AZA and the 100% Peak-Shift
Mikovits' Slide of Shame
"I wonder how it got through review"

The last also gives a link to a site of a Dutch female scientist, who tried to unriddle the XMRV-problem in April 2010, and who did so quite reasonably, also in view of what later was found. The writer calls herself "LaikaSpoetnik" (or also "Jacqueline") - which in fact suggests a communist background like mine, but this I don't know: I remark it because few in Holland will recall the Sputniks, that put the Soviet-Russians in space before the US, or Laika, a female dog with the questionable privilege of being the first earthly animal to go into space, and to die there - and I give the link to the relevant article on her blog, because it is well done:

Laika's MedLib Log

Back to Tony Mach.

There's a lot more on his blog on XMRV- and ME-related themes (check the months January and February 2012).

I did not myself dive deeply into XMRV-related stuff, mostly because I am ill and because I never read about virology before October 2009 (other than in dailies, in relation to HIV). So I decided in 2009 it was pretty pointless for me - ill and mostly clueless - to try to dive into it, given that real virologists had already done so.  I therefore cannot really rationally judge much of this, but then Mr Mach did rather a lot of work and rather a lot of reading, and he seems to have quite a lot of quite good arguments next to a number of strong convictions.

Then again, from what I saw from his site, few - say, such would be HGRV-luminaries as Bob, V99, Gerwyn or Angela Kennedy: All not to be found where and when I looked - have taken him up for factually contradicting them in many ways, which I think they should do if they seriously are concerned in finding the truth, rather than in ceaselessly pretending they know science while those who disagree with them, professors in virology or not, do not.

There are rather a lot of texts and subjects on his blog-site and he clearly is an ME/CFS-patient with a real interest in science. If you have ME/CFS, or think you have, and if you are really interest in science and have some intellectual competence, I think you should at least have a look, because chances are - whether or not you agree with Mr Mach - that you find things relating to ME/CFS that you did not already know. (***)


(§) As quoted on the Orwell-site of O. Dag: Dialectical truths from "1984". In the real 1984 I learned this in the University of Amsterdam:

  • "Everybody knows that truth does not exist"
  • "Everybody knows that all morality is relative"
  • "Everybody knows that all men are equivalent"

And when I posed Questions about this in public I was removed from the University of Amsterdam because of "the ideas you uttered", and "in spite of the seriousness of your disease" (for the Board of Directors were and are sadists, who wanted to make sure it hurt as much as they could: I had rightly complained, in public, that some of them, notably Sybolt Noorda and Bob de Hon, had helped make some 60 million guilders "disappear").

(*) This is also why I get less and less interested in ME/CFS, just as I grew disinterested in politics: The mass of mankind is almost continuously duped by smart rotters, and the few individuals who more or less understand what is happening and dare to speak out often are abused, mistreated, discriminated and locked out by the solid democratic majority of deluded fools:

Folly parades as a goddess, offspring of Plutus, the god of wealth and a nymph, Freshness. She was nursed by two other nymphs Inebriation and Ignorance, her faithful companions include Philautia (self-love), Kolakia (flattery), Lethe (oblivion), Misoponia (laziness), Hedone (pleasure), Anoia (madness), Tryphe (wantonness) and two gods Komos (intemperance) and Eegretos Hypnos (dead sleep)."

It is also why I have mostly given up on the hope of finding a cure or a rational explanation for what ailed me so long before I die: There are too many patients eagerly willing to be taken by the nose by trolls, frauds, or false flatterers, and also far too eagerly willing - "Our Community! Our Community!" - to discriminate others for having other ideas or values than the solid democratic majority of the neither highly gifted nor highly educated love to enjoy and impose on others, in the names of appropriateness, correctness and "Our Community":

Human beings are rationalizing animals, ideological apes - or so they would be, if they had not, by the good grace of our dear Lord, a rational soul. It is by means of this rational soul that men find what small measure of happiness is allotted to them, since it enables them to move their attention from solving real problems to indulging in the sweetest of dreams and delusions, thereby greatly contributing to their felicity if not their well-being.

(**) Then again that was merely a moral judgment or perhaps a judgment of taste. In 1964, age 14, I was barely not removed from the German Democratic Republic as an undesirable alien, because I kept insisting that the Socialist Pioneer Camp in which I was (supposed to be) holidaying seemed "fascist bullshit" to me. I did so because of the incessant very stupid and totalitarian propaganda and the military style of behavior inflicted on young children. (Seven year olds who, standing in military formation, after greeting the flag, were supposed to praise the genius of Brehznev, the Russian leader.) I was not removed as an undesirable alien mostly because my father had survived a German concentration-camp with East-German ministers of state, and also because I got blood-poisoning and had to be hospitalized.

(***) Mr Mach also repeatedly mentioned and quoted me, which is nice, but not a sufficient reason for me to write about him or his site. What I like about his site is that he really cares for science and really tries to find out things by reasoning and by such evidence as he found, and also that he doesn't waffle: He writes clearly, and generally one knows that he means and where he stands, which is in these days filled with PR not by far so common as one might think or as it should be.

Corrections, if any are necessary, have to be made later.


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 of 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)
 Maarten Maartensz
ME in Amsterdam - surviving in Amsterdam with ME (Dutch)
 Maarten Maartensz Myalgic Encephalomyelitis

Short descriptions of the above:                

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 understa, but nds ME is an organic disease
6. English mathematical genius on one's responsibilities in the matter of one's beliefs:

7. A space- and computer-scientist takes a look at psychology.
8. Malcolm Hooper puts things together status 2010.
9. I tell my story of surviving (so far) in Amsterdam/ with ME.
10. The directory on my site about ME.

See also: ME -Documentation and ME - Resources
The last has many files, all on my site to keep them accessible.

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