Nederlog

 

 May 5, 2011

 

me+ME: XMRV-news

 

There is some interesting XMRV-news - XMRV being the retrovirus that the study of Lombardi, Mikovits et. al. found in persons with ME in a study published in Science in 2009 - namely that a group of biomedical research scientists at the University of Utah, including doctors Bateman and Singh, did not find any in a considerable group of patients with ME/CFS.

Let me first provide some references - and I quote the titles of the texts as used in the originals, with links to the originals

My own last take on XMRV starts here: Some speculations around ME and XMRV - part I where you also find a link to part II.

What do I think? Well... I'd say professor Racaniello's post in his Virology Blog gives the most informed discussion, and he believes the study of dr. Singh et. al.

So do I, because (1) this was - in so far as I can judge - a really serious study that went to great length, and (2) this was a study by doctors who do take ME/CFS seriously, and insist it is a real biomedical disease, and who do not have - like quite a few authors of earlier "negative studies": Wessely, Van der Meer - a personal interest in not finding it, while (3) the study seems to have done most things well, scientifically speaking.

What does the study prove? At the very least that it is hard to find XMRV in patients with ME. It doesn't disprove the study of Lombardi, Mikovits et. al. but it does decrease its rational probability - unlike most other negative studies, that had various weaknesses listed by professor Racaniello in the above reference, probably did not even use patients with a credible diagnosis of ME/CFS, and were conducted by persons with a personal interest in not finding it.

As far as I am concerned, the jury is still out, and the Lipkin study, that still is ongoing, has the best design to try to determine the role and presence of XMRV, but this study by Singh et. al. at least makes it credible that some patients who very probably do have ME/CFS do not have an infection with XMRV.

This doesn't mean that there are not some patients who very probably do have ME/CFS who  do have an infection with XMRV, but then again there is the problem of various sub-groups and of diagnosing people, all apart from the real and genuine difficulty of establishing the presence or absence of XMRV.

There is one last point, addressed by both Singh's group and professor Racaniello, that the last mentioned summarizes as follows in his blog:

At the end of the manuscript the authors state their conclusion from this study:

Given the lack of evidence for XMRV or XMRV-like viruses in our cohort of CFS patients, as well as the lack of these viruses in a set of patients previously tested positive, we feel that that XMRV is not associated with CFS. We are forced to conclude that prescribing antiretroviral agents to CFS patients is insufficiently justified and potentially dangerous.

They also note that there is “still a wealth of prior data to encourage further research into the involvement of other infectious agents in CFS, and these efforts must continue.”

I agree with that, but with four qualifications:

I. There are some medical doctors with ME - dr. Deckoff-Jones, for example and dr. Snyderman - who use antiretroviral agents, and reported considerable improvements with it, which remains an interesting possibility, as it is evidence that - whatever the true reasons - these medicines may help some, and:
II. If medical doctors try this on themselves, also carefully monitored by others, I can only welcome that, in the circumstances such as existed so far with ME/CFS, and admire their courage.
III. I do agree that it is very unwise if one is patient with ME/CFS to try to buy these medicines on the internet and use them without objective and informed medical monitoring (though I do understand very well - being in my 33rd year of illness without help, mostly thanks to the fraudulent pseudoscience of Wessely, Reeves, Van der Meer, Bleijenberg and such - that one may feel desperate and may be very ill while getting no help).
IV. Many of the serious difficulties of patients with a diagnosis of ME/CFS - see the dreadful cases of Sophia Mirza and Lynn Gilderdale, driven to death by pseudoscientistic fraudulence and fakery - are due to the fraudulent pseudoscience of psychiatrists and psychotherapists who since 1988 have been busy falsifying science, muddying the waters, and indulging in propaganda presented as if it were 'evidence-based science'. For me, the perpetrators of this psychiatric/psychotherapeutic fraudulence are criminals who should be ousted from their professions, at the very least.


P.S. Corrections, if any are necessary, have to be made later.
-- May 5, 2011: Corrected a few typos and added a few links
 


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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