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July 28, 2011           

me+ME: XMRV, scientific publishing and the name for ME

 

These are three short pieces on XMRV, scientific publishing and the name for the disease called ME.

Sections

1. A bit more on XMRV
2. On scientific publishing
3. On the name for ME

1. A bit more on XMRV

I last wrote with "XMRV" in the title on June 1, in More on XMRV and Science and have little to add to that in principle, but I found earlier today on Phoenix Rising a reference to this paper:

The link to Phoenix Rising on the subject is here

I have read it all, and don't need to review it because it is well reviewed by one alex3619 on the PR-Forums in the last link, who makes most of the points I wanted to make, including the following on the concluding statement of the paper - and the blue part is that last statement, and the black alex3619's comment:

"It transpires that XMRV is not a new human tumor virus after all, but rather the latest example of a “rumor” virus"

They can argue that it is more probable, but "is" sounds like dogma. This is as much spin as science. If they were to argue that the balance of published evidence indicates the likelihood that XMRV is associated with CFS (can I call it ME?) is now lower, then it would be a much better conclusion.

This paper is probably accurate on the facts from what I have read, but it is definitely an opinion piece aimed at supporting a particular view, and not showing anything in the way of balanced argument. For example, there is no discussion of the very different results in patient samples and controls. There is nothing new, which is why it is being published in the commentaries section.

Indeed. Alex3619 also remarks on something else that struck me similarly, with the same conventions:

"Despite all warnings that the link between CFS and XMRV could not be confirmed, many patients suffering from this debilitating disease and desperately hoping for a cure started taking anti-retroviral drugs."

The small number of patients, who are being treated by a small number of doctors, are suddenly "many". Can we multiple our dismal research funds that way? How many patients can afford this treatment? How many have medical practitioners who are willing to prescribe the drugs at this point? Not many.

Yes - "many" is the wrong word on this place in a scientific publication, both logically and morally. The authors can save themselves - postmodernistically - by making all sort of provisos of what they meant to say, such as we "we meant 'too many for our refined and sensitive moralities', and anyway everything is relative, you see ", or such, but the word they used is grossly misleading, and it also suggests the authors have numerical data on the number of patients who did this, and since I know nothing about such data, I think that is a false and dishonest suggestion.

Furthermore, the only two persons I feel certain of that they do use anti-retroviral drugs are Dr. Deckoff-Jones, and Dr. Snyderman, both ill with ME|CFS (see section 3 for "ME|CFS"), and it seems to me not quite honest in what purports to be a scientific publication not to mention that, while insisting that "many patients suffering from this debilitating disease and desperately hoping for a cure started taking anti-retroviral drugs": Under the quite informed semantics I and other rational people use for the term "many" this is simply false and misleading.

My reasons for this statement are that in fact no one knows how "many", in a counting sense, and in all likelihood, there are few, in a counting sense, who tried, because these medicines are expensive and not easy to get.

Also, I am meanwhile getting to be quite fed up with healthy well-paid "scientific researchers" who moralize against patients with ME, without ever having the guts to say clearly that the "research" and the "scientific publications" of the psychiatrists and clinical psychologists who insist ME|CFS "is all in the mind" is the sheerest unscientific rot and an extra-ordinary and criminally immoral way of acting in any medical doctor. But the authors stand by and watch and smile, and say nothing.

Finally, the reason that patients with ME|CFS are "desperately hoping for a cure" is that many of them, like me, have been told, in public, for decades, that according to evident moral rotters and pseudoscientists, persons with ME|CFS are mad or malingering, while seeing that these evident moral rotters and pseudoscientists from psychiatry and clinical psychology have also succeeded in pirating most of the research money that should have gone into real biomedical research, and in factually driving several people to horrible deaths and probably driving hundreds to suicide, in the UK alone.

Why not mention these deaths, these "many" deaths caused by psychiatric pseudoscience, lies, defamations and slander of MILLIONS of "patients suffering from this debilitating disease"?!

The authors of the piece are Oliver Hohn and Norman Bannert, and while they may conceivably be right about XMRV - I don't know and have never believed or said XMRV is the cause of ME|CFS -  I find their writing up of their opinion not properly scientific, but biased and partial and wilfully blind, just as in the case in the fable where everyone but the small boy saw the emperor was naked, but pretended he was not, because that was so much better for their own careers.

And I say so not as a believer in XMRV, but as a psychologist and philosopher, now ill for 33rd year, and noting that it has given me an explanation for Nazism and Communism: The 'democratic majority' or ordinary men - including tenured academics pretending to be objective scientists - are not capable or not willing to extend common humanity to those who are not of their kind, group, class, ethnicity, race, religion or ideology: They are ideological apes:

If mankind had wished for what is right, they might have had it long ago. The theory is plain enough; but they are prone to mischief, "to every good work reprobate."
-- William Hazlitt

Here we have messrs Hohn and Bannert exercising their solidarity and group-thinking, namely for a few of their very own beloved kind or retrovirologists, quite possibly personal friends, I presume, and conveniently "forgetting" what real medical science is for, and taking a moral stance against a few ill doctors who have the courage to experiment on themselves, and who have both the illness and knowledge to do so, while conveniently "forgetting" to speak out against evident psychiatric pseudoscience or indeed speaking out against tenured academics who might help them make a career or hinder them if they show individual moral courage.

Brave of you, o so very moral gentlemen: very, very brave! (*)

2. On scientific publishing

I grumbled some two days ago in

about scientific publishing, which I know quite a bit about, having worked for a medical scientific publisher, and being involved in university-government and politics, from both of which I know that universities have paid for many decades enormous amounts of money to a few already stinkingly rich scientific publishing houses to have copies of scientific journals. What I wrote was

Scientific publications in fact made for the most part by academic researchers who get their incomes in the end from the taxes should be made freely available to the public (and not, as the horrible Springer and other commercial publishers do, be allowed to be kept behind a ban that's lifted only after one has paid $37 to a commercial publishing company - for what may also happen to be the most atrocious rot once one can see it, such as prof. Simon Wessely on wine, for that gentleman writes on anything, for money, and also on what I surmise is one of his addictions).

The internet changed all that, except that Springer is one of the companies that still tries to impose the old traditions on people who want to read stuff Springer published: First pay $37 per article, and then see whether you were frauded.

To me, that is theft, and so I am glad to be able to say that, first, the above not so good paper on XMRV was in fact published in a journal that is free and open access, whose editors also insists that they want it to be free and open - which is also as it should be, for the reason given: Scientists working in a university, at least in Europe, generally are paid from the taxes - as are their universities, their staff, the scientific apparatuses, computers and laboratories they use, and it is utterly ridiculous and immoral that after that some commercial firm makes huge profits on that by selling its journals at extortionate prices, as happened for many decades.

And second, I was sent today the following, that is very nice to read:


Announcement

Myalgic Encehalomyelitis:
International ConsensusCriteria (ICC)

We are pleased to announce that the International Consensus Criteria paper, which is presently in accepted preprint format online in the Journal of Internal Medicine, will be available free online when it is assigned an issue.

The initiative for and development of the ICC for ME was done outside any organization without any financial or other assistance or sponsorship.

We would like to thank all members of the international panel, representing 13 countries, for graciously volunteering their time and expertise without recompense and working together to bring the International Consensus Criteria for Myalgic Encephalomyelitis to fruition.

We all hope the International Consensus Criteria will improve recognition of Myalgic Encephalomyelitis, promote consistency in diagnosis internationally, and lead to appropriate treatment in a timely fashion.

Myalgic Encephalomyelitis:
International Consensus Criteria

Co-editors

Bruce Carruthers, MD, CM, FRCPC

Marj van de Sande, B Ed, Grad Dip Ed


Indeed, and I thank Mr Carruthers, Ms van de Sande and all other others for their contributions, which I much appreciate, and the more so as they managed doing it "outside any organization without any financial or other assistance or sponsorship."

Finally in the last link above and here: On versions of CCC and ICCC you can find good pdf copies of the relevant publications, which have been popular downloads the last two days from my site.

I do recommend all patients with ME|CFS to try to read through the ICC; to mail it to their GPs; and to take it up with patients' organizations, and insist this is the best representation of the disease they have, and this contains the standards and criteria by which they ought to be judged and treated, and ought both in the scientific medical sense, and in the moral sense.

3. On the name for ME

As far as I know - which does not cover e.g. Facebook, that I do not want to take part in, except perhaps in very extreme cases - there are ongoing discussions among patients with ME about what to call the disease: ME, CFS, ME/CFS, CFS/ME or what?

Personally, I prefer ME ever since learning of its existence, when I had the disease for ten years, and learned about it on the BBC-WS, in a program called "Healthmatters" or indeed "Health matters", where it also was called "ME" or "Myalgic Encephalomyelitis".

Since then, messrs Reeves, Jones, Wessely, White, Bleijenberg, Van der Meer and other pseudoscientists have insisted for decades, very well supported by tax money, that the disease is and should be called "Chronic Fatigue" or "Chronic Fatigue Syndrome".

They succeeded - having so much tax money to fund dishonest pseudoscientific propaganda - in making that name well-known with the public and medical scientists, which is very unfortunate, because it tends to pooh-poohing the disease ("We're all fatigued: brace yourself a bit! Do some exercise! Get some doses of psychotherapy!") and anyway has nothing to do with real biomedical science, which the same pseudoscientists for all these decades have normally not even mentioned exists in their own pseudoscientific publications, in their own pseudoscientific journals, approved by their own peers in pseudoscience, that is, psychiatrists, clinical psychologists, or medical doctors bought by governments or pharmaceutical companies to do their bidding.

What is to be done? Especially since the

insists "ME" is the far more correct name, which is a good idea for various reasons among which is this: As a patient one can now say - as can one's lawyers - that there are two schools of thought about the disease one has: One is a pseudo-scientific psychiatric and clinical psychologic one, that insists, in the interests of psychiatrists and clinical psychologists financial betterment, that there is no real disease, and that it's all dysfunctional beliefs, and it should be called "CFS"; another is a medical scientific one, supported by all good and honest doctors, that insists, in the interests of patients, honesty, integrity, fairness, and without slandering or defaming ill people, that it is a real, serious, debilitating and painful disease, and should be called "ME".

Of course, I agree with the latter, and the above link has the criteria, but since it is also true that in the US, and also in the UK, it seems "ME" is far less widely know and used than is "CFS", it may be necessary to also use "CFS", if only because many who have been thus stigmatized may not know any better.

For these reasons, I prefer using "ME" or "M.E." as the preferred abbreviation of the name of the disease, and "ME|CFS" as a label that allows people who have only heard of CFS to find information.

As it happens, in mathematical logic the pipe symbol "|" is often used as an abbreviation for "either ... or --- but not both" aka "exclusive disjunction" aka "xor", which is why I used it here.


(*) Let me refer you two very moral and very brave German gentlemen - isn't it? - to the site of Sophia Mirza's mother, where your fellow German Martin Niemoeller is quoted, who incidentally survived one of the same concentration-camps as my father did, namely Sachsenhausen:

"First they came for the Communists, and I didn't speak  up, because I wasn't a Communist.
Then they came for the sick, the so-called  incurables, and I didn't speak up, because I wasn't mentally ill.
Then they came for the Jews, and I didn't speak up, because I wasn't a Jew.
Then they came for me, and by that time there was  no one left to speak up for me."


P.S. 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)
2.  Malcolm Hooper THE MENTAL HEALTH MOVEMENT: 
PERSECUTION OF PATIENTS?
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)
9.
 Maarten Maartensz ME in Amsterdam - surviving in Amsterdam with ME (Dutch)
10.  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 understands 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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