Nederlog

 

 March 20, 2011

 

me+ME: Some speculations around ME and XMRV - part II



I am a little better today than most of last week, and use the opportunity to write out some speculations around ME and XMRV. The reason to write "speculations" is not that I make excessively wild hypotheses, for I don't, but because I know there is much I don't know.

Also, to pace myself, I have split it up in two parts, and this is part II, that follows part I of yesterday, that contains the first three sections.

Sections:

1. On XMRV's "panning out", or not
2. On some four alternative causal explanations
3. On subgroups and definitions
4. On The Big Lie
5. On psychiatry and psychotherapy
6. On the possibilities of real science

4. On The Big Lie

For more about The Big Lie, both historically and what I mean by it in the context of so called "evidence based" "research" done on so called "patients with ME/CFS" by so called "scientists" see first my

and indeed also yesterday: The British so called PACE trial, supervised by professors Peter Denton White, Michael Sharpe, and Trudie Chalder is not so much real science as real propaganda, based on a re-definition of the disease ME, a neurological disease that is explicitly not a psychiatric one, according to the World Health Organization, as if it were nothing but unexplained fatigue, that then is "researched" by "scientists" of the moral and intellectual qualities of White, Sharpe and Chalder, using "patients" who have been carefully selected to be possibly "fatigued" in some sense, possibly since a week or so, but to have no sign of any disease - after which the obtained results, again with every appearance of statistical and linguistic dishonest recooking of the data, is presented in "scientific journals" as if it were research about patients with ME, normally also without any evidence in their articles of any non-psychiatric research into ME, for these folks have these morals and practices, since many years also.

Unsurprisingly, the one main finding of White, Sharpe, Chalder, Wessely and others who have used this method systematically for over two decades now, is that they "cannot find anything medically wrong" in "the patients" they have so honestly, rationally, and morally researched (including signatures by the patients that voids the researchers from any responsibility if their condition worsened...), in any "statistical sense", which then "proves" in the same "statistical sense", they claim, these patients are not biomedically ill but simply nutters, except that they know enough about propaganda and lying to replace that term by various euphemisms, of which the presently favoured one is "somatoformers".

I have written repeatedly about this, e.g. starting here in January 2010

for indeed this is what I hold it to be, since I have the requisite degrees in psychology and philosophy to say so, and either my over 40 years of reading philosophy of science, methodology, probability theory and psychology thought me absolutely nothing at all about what real science is, for which see e.g.

or else showed me that what messrs. Reeves, Jones, Wessely, White, Van der Meer, Bleijenberg etc. ad nauseam present as science is not real science but pseudoscience, that at least they, if possibly not all those who believe in them and co-write their papers, full well know is pseudoscience. So let me turn to my next subject:

5. On psychiatry and psychotherapy

There are several interesting questions here that I shall briefly raise and try to answer, but this must remain speculative: While messrs. Reeves, Jones, Wessely, White, Van der Meer, Bleijenberg etc. pretend, by logical implication, that they know me and my mind, and insist I am a wimp, a malingerer, a liar and/or a hysteric, since they have published collectively over the past two decades tens of papers with that logical implication, all based on the techniques of pseudoscientific research exposed above and yesterday, I am myself not, as they are in majority, a pseudoscientific shrink or psychobabbler, I never made money that way, and I never met any of these gentlemen, nor corresponded with them (since the only one I tried to do with this, professor Van der Meer, rather is impolite than he is found out, and declined to answer my very polite and clear letter, and lied on and on and on).

Apart from that, I certainly do not take kindly to being defamed, discriminated, offended, lied about, or being depicted, by direct logical implication, as a madman ("somatoformer"), by what I believe I have very good reasons for, in consequence, and given my own academic expertise, to consider to be liars, frauds, cheats, and pretentious asses for money, or indeed, as I also think in several cases, by sadists for the kicks it gives to denigrate those whom they believe cannot defend themselves.

To pose the questions explicitly:

  • Why do messrs. Reeves, Jones, Wessely, White, Van der Meer, Bleijenberg etc. lie, deceive and mislead in this way, in the name of "evidence based science", as they style their own crap, in a for them typical propaganda phrase (as there is no empirical real science not based on evidence, those insisting that their tales are "evidence based science" probably are fibbing anyway)?
  • Why can they get away with it?

As to the first question(s): It probably is a mixture of motives, that have to do with the kind and level of science that are psychiatry and psychology - it is this that most of these "researchers" specialized in, for the most part - and with the personal characteristics and interests of those lying for money by way of "science".

As it happens, both psychiatry and psychology are not much of real sciences, to the present day, as are physics and chemistry for example, mostly because there is an enormous lack of relevant knowledge how the organ these sciences are really concerned with, the brain, really works.

How the human brain produces human experience is, to this day, for the greatest part a mystery - which means that much of what the providers of psychotherapies give is not based on any relevant knowledge, and all too often indeed is mostly psychobabble, fraudulent talk, and in practice a combination of synthetic sympathy offered, for money, by a self-styled authority-figure, possibly combined with tranquillizers or indeed sometimes psychofarmaca, which as it happens is the most scientific part of psychotherapeutical "science": There are some effective medications that help one sleep or grow less depressed, for example.

The main reasons psychiatrists, psychotherapists and clinical psychologists lie so much, namely about their own capacities and insight and status, about the rational and evidential basis of the theories they claim to practice, and about the effectiveness of their cures, are these six:

  1. it pays really well, for very little to no real expertise or real effort or real competence
  2. people are easily deluded, on average, especially if they have problems

  3. nearly all they find as patients lack the knowledge, brains or motives to (want to) establish fraudulence they are exposed to "in the name of science"

  4. the colleagues of psychiatrists and psychotherapists and their professional bodies all are designed and mostly exist to defend the status, incomes, and supposed integrity and morality of most of the colleagues (who play by the rules)

  5. others who know more than most of the pitiable and very poor level of very much of psychiatry or psychology, namely other medical doctors and psychologists who do not earn money by psychotherapy, generally look the other way

  6. while e.g. Freud's, Jung's and Ranke's psycho-analytical teachings are the clearest rot if you look at them from a rational scientific point of view, they also function as something inbetween literature and theology for masses of intellectuals, for whom they function as a substitute for religion, that worked quite well in this sense, ever since Freud started to make money this way.

In brief: As with other commodities, psychotherapy sells and is sold by propaganda, and gives satisfaction depending on the delusions of those who buy it, who tend to be precisely those apt to be the easiest to delude:

Incidentally, also because I do not want to be misunderstood: I do believe there are genuinely mad persons, indeed with a diseased brain (possibly poisoned, as may happen easily through alcohol or drugs); such people do need help; and quite possibly the great majority of those doing psychiatry professionally mean well and often may do well (and besides... it doesn't take a degree to treat people in a humane way: it merely requires some remaining humanity, honesty, moral decency and personal guts, after having graduated).

What I am saying is only that these are precisely the fields of medicine where fraudulence is easiest to do and the most difficult to expose; where there is least relevant knowledge (namely of the brain); and where there is much evidence that, in the past, large parts of the fields and the practitioners, especially those catering to the neurotics rather than the psychotics, to those with relatively minor problems rather than to those fit for sectioning in an asylum, simply were in the business of selling hogwash or synthetic sympathy for money, under pretense that they knew what they were doing.

The main reasons why psychiatrists, psychotherapists and clinical psychologists can get away with so much are also mostly stated above, and besides are implied by the many parallels between psychiatry, psychiatrists and psychotherapists on the one hand, and religion, priests, gurus and miracle workers on the other hand: Religions and religious leaders also have succeeded in flimflamming the vast majority of mankind for many centuries - as also the religious must agree, if talking about other religions than their own.

Finally, there is one disquieting possibility I should also mention, though it is in the nature of things one cannot find really good evidence for, since if real it is a very well protected state secret:

  • It is at least possible that some retroviral work that has been done in the United States and in England was in fact secret defense work, and there may have been  engineered retroviruses for the same reasons the neutron bomb was developed: As a weapon of war.

If true, this would explain rather a lot that seems fairly odd, such as the close ties of professor Wessely to the English military; the enormous amounts of propaganda spend to convince the public ME "must be between the ears"; the lack of available funding for the biomedical study of ME/CFS for several decades (indeed until it seemed as if XMRV might also be in bloodbanks that may infect everyone); quite a few very strange goings on in the US governmental institution CDC as regards ME/CFS and research into it, as exposed by Hillary Johnson in "Osler's Web"; and the fact that a lot of papers relating to ME have been declared State Secrets in England until 2071, i.e. a time when almost anybody having ME/CFS now will be safely dead and buried.

As I said, this manner of hypothesis is very much in the nature of things one cannot find really good evidence for, indeed especially if it is true, and I generally find it unprofitable and unwise to speculate about eventualities one can know are very hard to find any good evidence for, but since I am neither blind nor stupid, and since I can see a retrovirus that causes something like ME is, or would be, a most effective means to defeat whole armies and populations in a short while, without killing them, and without destroying their cities, factories or priced commodities, I do list it here as logical possibility.

If it is true, indeed it is very likely that mere patients suffering from it, and mere honest researchers trying to find it, will not be able to establish it, since then it will be a very well guided secret all who work for the governments harboring it will be paid to guard, even if they don't know about it themselves. (*)

6. On the possibilities of real science

As it happens, I have always been a strong propounder of real science, and any rational answers as to causes of and cures for ME/CFS must come from real science and real scientists.

And while I am a great believer in the general efficacy of real science - by which I mean mostly physics, chemistry, mathematics, and whatever is based on these - in view of the fact that the technology by which human beings live is the fruit of real science, and shows that real and practicable applicable knowledge of nature can be established, both in theory and in practice (it is the production of real effective technology that works without any faith in it that marks off real science from pseudoscience), real science also is something that tends to grow fairly slowly, and may take several generations to become practically useful and feasible - which is quite unpleasant if one has a so far incurable so far unexplained disease.

It therefore also is quite disappointing that most of the research money there is for ME/CFS has been spend on what I regard as pseudoscience or pseudoscientists, for I do not believe money spent on psychiatrists is money well spend in the interests of patients with ME/CFS.

Besides what is made available in terms of funding is very little anyway, comparatively:

NIH Budget for 2012 and Disease Prevalence

  • Multiple Sclerosis -   $135 million 500,000 Americans
  • Lupus                -   $114 million 1.5 million Americans
  • West Nile Virus    -   $46 million 3,630 Americans (2007)
  • Lyme Disease      -   $25 million 150,000 Americans (since 1992)
  • Fibromyalgia        -   $9 million 3-6 million Americans
  • CFS                   -   $6 million 1 million Americans

NIH Funding: http://report.nih.gov/rcdc/categories/

The amounts in other countries are similar and as said, the money that is made available for research into ME/CFS has been spend mostly, at least since 1988, on psychobabblers who produced reams of bullshit and also much intellectual and moral confusion.

Next, another disquieting possibility, also apart from the intellectual and moral confusion around ME/CFS, that is real and awful enough, is that likely much more of this is to follow within a few years, not only around ME/CFS, namely upon the coming into force of the DSM-5, i.e. the Diagnostic and Statistical Manual of the American Psychiatric Association, that promises to mess up much of medical science, and to declare many genuinely ill people to be "somatoformers" first and foremost, especially if they lack the money to pay expensive medical research and researchers from their own pockets, as will be true of most.

See this item for a good explanation in principle, with many links:

The first of the above four items contains many links and explanations, which are quite needed, as the DSM-5 may turn out to be very dangerous to persons with ME/CFS if by the time it comes into force - ca. 2013 - there is no widely accepted biomedical explanation for ME/CFS:

Bureaucrats, helped by the followers of Reeves and Wessely, some of whom even may be honest, will then be in a position to declare one mental, a malingerer and in need of forced labour (GET) and brainwashing (CBT), simply on strength of the facts that (i) one's complaints cannot be fully explained by medical science-as-is and (ii) the APA + editors of the DSM-5 have decided that anyone who has an ailment present medical science cannot explain, must be - therefore - mad (which is very convenient for the consciences of bureaucrats and the incomes of shrinks, and also will save a lot of money on cures, treatments and research for governments and insurances, at least for the majority of folks who are not rich and not leading politicians either).

Another major problem for the practice and efficacy of real science and real scientific research is that over the past four decades in the West major changes have taken place in education and in the universities, and the average intellectual level of academically educated and degreed persons is much less than it was up to forty years ago.

Consequently, there is less real science practised and funded, and there are fewer real scientists educated, and they must compete for academical positions and research funds with a far greater group of folks who are not really interested in real rational science, but who do have nominal scientific degrees, all thanks to the blessings of postmodern levelling of education and the destruction of nearly all objective standards over the past forty years:

Finally, there is yet another break on the application of real rational science to real problems:

There still is an economical crisis going on, if not in banks nor in the lives of bank managers, since the ordinary people of the world, that is, those who are neither bankmanagers nor politicians, and especially in the Western world, still have to pay off the many billions of loans that were made to save the banks and the bankmanagers in 2008-2009.

So there will be considerably less money available for social services, for insurances for those who have no or little money, for disability allowances, and for scientific research.

Even so, the one real and realistic hope for ill persons with an ill understood disease is real science, and personally I feel quite certain that if mankind survives (which I do not feel as certain about, what with the political leadership and masses of ordinary men I have seen in my life) there will be found a rational explanation and cure for ME/CFS.

It is true, though, that at nearly 61, being ill since I was 28, and never having received any help but minimalized dole, I am rather cynical about a cure for me, and will be quite happy if I live to read a plausible rational explanation of it with good empirical evidence for it.

- previous Part I


Note

(*) I do not think this is a profitable subject to investigate or speculate about, simply because one cannot expect to be able to find really good evidence for it if it is true, while there clearly will be no good evidence for it if it isn't.

The reason I am listing the possibility is that it is a genuine logical possibility that, if true, would explain various odd things that have happened around ME - and notably why the tame psychiatrist of the English army, none other than professor Simon Wessely, is the very one who since decades insists that ME is purely mental, and based most of his career on just that, while the man must know that is nothing better than medieval rot as an explanation in modern medical science


P.S. Corrections 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)

2. Malcolm Hooper THE MENTAL HEALTH MOVEMENT:  
PERSECUTION OF PATIENTS?
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)

        home - index - top - mail