Nederlog

 

 March 19, 2011

 

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



I am a little better today than most of this 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, part II to follow hopefully tomorrow, and greyed out below (and link now to part II).

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

1. On XMRV's "panning out", or not

This first section is in part related by an interesting piece by ixchekali on PR-F, which you find under the underlined last link, from which I quote a part:

I hope XMRV pans out. Besides giving us a known etiology and biomarker, it would lead to treatments. I'm not giving up that hope. But I want science to give us the truth, whatever it is. Junk studies posing as science won't give us that, but well-designed studies will (eventually), even if they're negative. As long as the funding doesn't dry up, and as long as the researchers keep looking.

I quite agree with nearly all of this, but not quite with the first statement. I agree with the second statement, and indeed if XMRV is causative for ME/CFS - of which so far there is no proof, nor disproof - "a known etiology and biomarker" would be available, which would be nice to have in any case, also apart from XMRV, as would be "treatments", although it should be remarked also that if XMRV is causative for ME/CFS, it may be so for a sub-group of those who are presently diagnosed with it, or assume they have it.

Then again, if it is XMRV it is a human retrovirus, and the idea that millions may be infected with such a virus doesn't inspire me with great feelings of joy, since then also the virus has been proven to be quite dangerous. If that is what the facts are, that's what one has to accept, but to hope for it seems a bit much, because it is not something one would wish upon people (some psychiatrists, politicians and dictators excepted, perhaps).

Also, since it is an if, there are various alternative causal explanations.

2. On some four alternative causal explanations

There seem to me to be at present at least four more or less plausible possible explanations for ME/CFS: It's caused by (i) XMRV (ii) failing mitochondria (iii) some neurological malfunction (iv) something wrong in the blood or its supply.

I'll forego explaining why these seem plausible to me, but mention a few points about each of the four:

(i) XMRV:

Not proven nor refuted: It seems to me that currently XMRV is neither proven nor refuted as a causal explanation for ME/CFS - and if I write "XMRV" I mean a new human retrovirus, and do not pretend I know much about it or about retrovirology, but I also insist that in any case, also for retrovirologists, there is much more to find out about it, including establishing its presence or absence, than there is now known about it.

Not impressed by negative papers: I am not impressed by the negative papers that insist that XMRV is a laboratory contaminant rather than anything else, nor by the negative papers that couldn't find it, though I am also not at all certain XMRV is the or a cause of ME/CFS.

The contamination papers do not impress me for several reasons:

(A) It seems to me to be engineered as a group of four, combined with excessive and simply false because flagrantly overstated claims, which suggests not so much solid science as an attempt to kill the hypothesis that XMRV is the cause of ME/CFS - or indeed involved in prostate cancer, other than as a contaminant. Moreover, if you want to destroy a hypothesis as a scientist, you do not do it by a media-campaign - which is to say that, conversely, if there is a media campaign - such as the flagrant overstatements by professors Towers and Pinching - it suggests there is no solid science involved or available by which to achieve the desired destruction of a hypothesis in a rational, scientific and indeed also polite way.

The efforts to prove XMRV is due to laboratory contamination seem to me to have been mostly propaganda, though I do not suggest this is the doing of most of those who co-wrote or wrote them.

Also, it seems quite irresponsible to me, wholly apart from ME/CFS: It is important to clarify the status of XMRV in general, because another retrovirus, especially one that is denied or has unclear status, is most undesirable to have in blood in bloodbanks, for example, from whence it may hit anybody in need of blood, if it is there but unknown to be there, or because the means to establish its presence or absence do not exist.

(B) The negative papers about XMRV - those which did not find XMRV in "persons with ME/CFS" - also do not much impress me, and that for mostly three reasons:

(B1) If it was laboratory contamination, then why did it struck at WPI and NIH and not elsewhere, notably in less capable hands, which, rather than finding it through contamination, didn't find anything? Similarly, why the large differences between persons with a diagnosis of ME/CFS found infected by the WPI and NIH and the control group of healthy persons?

One plausible answer to the first question is that others did not in fact research blood from persons with ME/CFS, but blood from somehow fatigued persons, also especially screened to keep out anybody ill.

One plausible answer to the second question is similar to the one just given: The WPI and NIH used blood from persons with severe ME/CFS; other research into XMRV in "patients with ME/CFS" used patients who probably in majority have something else than ME/CFS, and indeed may have been specially selected for just that purpose - for it is interesting and typical that those with the biggest noises and with negative results are precisely the psychiatrists and psychotherapists at King's College and the Radboud University who each have a vested personal interest in its not being found, and these folks seem fraudulent to me anyway, given the utter nonsense they spouted about ME/CFS being caused by dysfunctional beliefs (which is possibly true in 1 in 10.000 very confused very stupid persons, but not in the many academically educated persons like me, who have it for decades now).

(B2) So that is an alternative explanation for the non-findings of XMRV in "patients with ME/CFS": Either the researchers - notably in England and Holland - and namely for perfectly plain human reasons of self-interest, status, and a desired continuing career, falsified either the findings, the experiments or the tests, or made it very probable that the blood tested was not of "patients with ME/CFS".

Since I personally do not believe persons who publish stuff as did Wessely, White, Sharpe, Chalder, Van der Meer or Bleijenberg can be honest, rational, and competent scientists, there is little I consider beyond them, except decency and honesty, and anyone who looks on the internet can find that a considerable percentage of so-called "scientific research" about sensitive subjects, that is mostly: on the success or failure whereof depend large financial or personal interests, is suspected to be to some extent falsified, cooked or pimped.

(B3) A third alternative explanation for the non-findings of XMRV in "patients with ME/CFS", apart from honest researchers doing honest research on the blood of persons who do not have ME/CFS and therefore not finding any (not even by lab-contamination!) is that it seems quite certain that at the existing state of knowledge and techniques the presence of XMRV is difficult to establish.

And to this one must add that, for various reasons, not necessarily with any bad intent, the methods of the WPI have never been replicated - except that professors Wessely and McClure, both of whom have repeatedly declared (Wessely since 10 years now) that they are not working anymore on matters relating to ME/CFS, today come in the news with the assertion they have replicated the WPI's methods, and found nothing.

Well... both have lied, exaggerated, distorted, and talked falsely before, and I see every reason to believe they are now, and if Myra McClure is honest, then still the patients' blood she again couldn't find anything in was produced by professor Wessely, who in my estimate is capable of many things, but not of doing honest rational science in the field of ME/CFS.

In any case, while I am myself not overly fond of the hypothesis that ME/CFS is caused by a human retrovirus, it may be, and so far only the Lipkin study seems to have the right kind of design to possibly establish what is the relation between XMRV and ME/CFS and how its existence in human can be established with rational certainty or probability.

But the Lipkin study so far has not been published - which is another reason why professors Wessely, McClure, Towers and Pinching have been indulging in propaganda and impostures to the media, motivated by their own personal career interests rather than honest desire for the truth.

(ii) Mitochondria and the citric acid cycle

The citric acid cycle, by which human beings (and very many other living things) manufacture energy, is a fascinating and very complicated series of interdependent biochemical processes, that has been clarified over the last six or seven decades, but still is not fully understood.

When I went into bio-chemistry books in 1986-1987, to try to find out what might ail my ex and me, both of whom developed the symptomatology of ME/CFS in early 1979 after EBV, and which seemed to both of us much in the way of an EBV that our bodies never managed to rid itself completely of, neither as infection nor in its consequences in terms of physical misery, exhaustion, PEM, diarrhea and night swears, I soon arrived on parts of the Krebs-cycle (other name for the citric acid cycle) and a possibility of failure in the mitochondria, that later also was arrived at by Dr. Myhill and others, independently no doubt, because I did write it out for the excellent GP I had at the time, but did not publish it, and soon fell more ill, and ever since lacked the energy to seriously dive again into biochemistry, which anyway is not my field of expertise, and which I had entered into, at that point in time, only because I had a series of data on my own state of health and had not yet heard about ME/CFS, which I only learned about in 1988 or 1989.

In any case, ever since then it seemed to me that malfunctioning mitochondria and/or a malfunctioning Krebs-cycle is a good candidate to explain why my ex and I remained ill, and still does so.

(iii) Neurological and recuperating difficulties ("bugged")

That my ex and I remained ill for such a long time - while we studied, and had absolutely no personal interest whatsoever to pretend we were ill - we also tried to explain for ourselves, after we had been ill for 4 months to half a year from EBV, by the hypothesis that something might be bugged in us (in programming terms, that combine well with being infected by EBV) in that our bodies seemed not to be able to fully recuperate from EBV.

That is, we both had a serious case of EBV for ten days to two weeks, and partially recuperated from that, but never fully, and specifically we kept sweating or having diarrhea, and kept feeling miserable and having PEM, which we both quickly decided on was the most characteristic thing that bothered us: That we had to somehow pay for every effort we made, in terms of exhaustion and a worse conditions, for possible a long time after having made a special physical effort, as we often had to, in order to do examinations or be present at some lecture or practicum on which presence was mandatory.

This still seems to me a decent explanation-in-principle, and it also accords with the WHO-version of what Myalgic Encephalomyelitis is: A neurological disease brought about by an infection of some kind. It also can be combined with the previous hypothesis.

(iv) Something wrong in the blood or its supply

This is another - admittedly vague - hypothesis my ex and I arrived at quite soon: That something might be wrong in our blood or in its supply to the cells and the brain, simply because we both had very much less energy than before we fell ill: Perhaps not enough blood, or not enough oxygen transported, or something else wrong in the blood that made it more difficult for our bodies to get food and oxygen to the cells that needed it to produce energy.

This still seems not refuted to me as a possible explanation for what ailed my ex and me, if perhaps less plausible than the other hypotheses.

Also, I should add that since I arrived at these explanations - (ii)-(iv) all dating to the late seventies or eighties, for me and my ex - there are some others that I had not arrived at that may be plausible, notably leaky gut or irritable bowel, that may be involved in my case, but in my case had no obvious symptomatology the first ten years.

3. On subgroups and definitions

What seems to me very probable by now - and did so before, but with less evidence - is that there are several subgroups with the symptoms of ME/CFS, as indeed there are also several definitions of ME/CFS, or indeed just ME or just CFS.

This means that neither the population of those having - some or all of - the symptoms of ME/CFS, according to some definition of it, nor indeed the definitions of it, are unambiguous and clear, and who has it, and what he or she has in verbal terms, are still quite unclear.

This is unfortunate, and it is in part designed, notably by the CDC in the US; Wessely's followers and co-workers in England, and Van der Meer and Bleijenberg in Holland, who all pretend "fatigue" is the distinguishing mark, whereas that is definitely false for those with moderate to severe ME, who generally seem to be left alone to rot by the medical researchers who investigate ME, except in some cases, by serious researchers.

It seems to me that the way out of this is fairly clear if to this day not often followed:

(A) For attributing ME/CFS to patients use the Canada Criterions, or clinically possibly more useful criterions derived from these by dr. Jason and co-workers, and

(B) call - at least - those patients who do satisfy such a CCC-(Canada Criterions) based definitions patients with ME rather than CFS, and finally

(C) at long last get funds for and biomedical research into those with serious cases of ME, since these suffer most and since whatever clinical signs there are to be established for marking off ME from other ailments are probably easiest to establish in those who have it seriously.

For more on this, see my Two good articles on ME - NYT and WSJ and PACE The Big Lie: It seems to me very probable that at least the research conducted in England and Holland by Wesselytes and Bleijenbergians are based on populations of patients who probably do not have ME in the sense of the Canadian Criterions, or indeed in the sense of the disease my ex and I have; that at least Wessely and Bleijenberg have contrived this, for two decades now, because (i) patients who can still walk around are easier to research (ii) they use definitions of "ME" or "CFS" which exclude those who are (a) really ill in any clear sense and (b) patients who do meet the Canadian Criterions, in order to (iii) "establish", by what they are pleased to call "evidence based medicine", that a large group of patients with no explained disease, part of which meet the Canadian Criterions, and part of which have suffered a lot, notably by being denied any help, "deserve" not to get any biomedical research into the possible causes of their suffering and "deserve" not to get help for disabilities, "because" they are malingering or insane rather than ill, and are "somatoformers" rather than physically ill, and thus what they do "deserve" is to be treated by psychiatrists and psychotherapists, by techniques designed to cure them from their delusions that they are ill (CBT), and also by suitable punishments, corrections, and forced labour, for the occasion restyled - "Arbeit macht frei!" - as "exercise therapy" (GET).

Finally, having mentioned subgroups and definitions: It seems to me that a considerable part of the findings about ME/CFS, including quite possibly the findings about XMRV and ME/CFS, are generated by the definitions used and the deliberate exclusion of patients with serious ME/CFS from research by means of biased definitions.

And that is not real rational and moral medical science, but methodological manipulation and falsification: It should be easy to find seriously ill people that satisfy the Canadian Criterions and have these investigated biomedically - but what gets funded in the US, England and Holland is mostly research of people who are not seriously ill, and whose illness does not satisfy the Canadian Criterions for ME, while the results of this "research" is then declared valid and applicable, as has been happening for over 20 years now, no doubt on purpose, to those who are seriously ill, on the basis of the fallacy that the seriously ill who are in fact not researched and the not at all seriously ill who are "researched" (by "researchers" who use definitions to guarantee the seriously ill are excluded from their "research"), both "have the same disease" because "both groups suffer from fatigue":

Next Part II -


P.S. Corrections have to be made later, and Part II (sections 3-6, greyed above) is to be made later as well.
-- Mar 20: This has been made and linked in, and in this text some corrections have been made.

The above picture is an adaptation by dr. Speedy from a Glasbergen-cartoon, that illustrates the fallacy - "you are fatigued, he is fatigued, so therefore he and you are fatigued for the same reason" - quite well, and is THE tool of trade of the 'evidence based medicine' that Reeves, Wessely, and Bleijenberg practice, honorably and morally, in their own judgments.

See also the Wikipedia:

Incidentally, here is a finding on the PACE-trials reported on Phoenix Rising, also as regards sub-groups, definitions and medical, moral and human honesty....

If one assumes the forms in the long PACE Trial document are correct (they
look very genuine to me!), for the CDC/International criteria - they only
asked about symptoms in the last week!!

=======================================

Appendix 6: Case Report Forms

A6.4 CDC

CDC

Please score whether you have had any of the following symptoms in the last
week:

Score each symptom by putting a circle round the number that most closely
resembles the frequency and intensity of that particular symptom.

Symptoms

not present at all
present a little
presence more often than not
present most of the time
present all of the time

------------

Impaired memory or Concentration

Sore throat

Tender lymph node (glands) in your neck or under your arms

Muscle pain

Joint pain in several joints without swelling or redness

New headache

Unrefreshing sleep

Feeling ill after exertion

====================================

The CDC criteria asks for symptoms over the last 6 months. People can have
temporary symptoms for all sorts of reasons e.g. Pre-Menstrual
Syndrome/similar - this would allow them satisfy these criteria.

And I'm guessing that "present a little" may have counted as having it.

Also, the "post-treatment" data for symptoms in Table 6 and in sentences
like "Postexertional malaise was lower after CBT and GET than it was after
APT and SMC" would also be based on this wording (i.e. 1 week duration).

Tom


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)

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