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Nederlog
Sep 22, 2011           

Exit XMRV?


'A wise man proportions his belief to the evidence.'
  -- David Hume.

There was no Nederlog the last few days because I still am not very well - supplementing B12 seems still to help, but I also don't get enough sleep: possibly I have to experiment with dosage (*) - and also I was otherwise occupied with doing things that took rather a lot of energy.

Anyway... I am still around and able to comment, and today seems to see the exit of XMRV as the hypothetical cause for ME.

The story may not be over, and indeed the hypothesis has not been refuted, but it is in considerable difficulty, and there also has been a partial retraction by some of the authors of the original study, published in October 2009, that sparked a great amount of interest and hope in patients with ME/CFS, and generated considerable publicity about the disease and about XMRV.

Here is the main news, in abstract, as published in Science, that also published the original study in 2009. This is titled

Failure to Confirm XMRV/MLVs in the Blood of Patients with Chronic Fatigue Syndrome: A Multi-Laboratory Study

and has 21 authors, including - and I mention only those names I've mentioned in Nederlog,  that are also probably well known to patients with ME: Komaroff, Mikovits, Switzer, Lo, Alter, Coffin and Ruscetti.

Here is the

Abstract

Murine leukemia viruses (MLV), including xenotropic-MLV-related virus (XMRV), have been controversially linked to chronic fatigue syndrome (CFS). To explore this issue in greater depth, we compiled coded replicate samples of blood from 15 subjects previously reported to be XMRV/MLV-positive (14 with CFS) and from 15 healthy donors previously determined to be negative for the viruses. These samples were distributed in a blinded fashion to nine laboratories which performed assays designed to detect XMRV/MLV nucleic acid, virus replication, and antibody. Only two laboratories reported evidence of XMRV/MLVs; however, replicate sample results showed disagreement and reactivity was similar among CFS subjects and negative controls. These results indicate that current assays do not reproducibly detect XMRV/MLV in blood samples and that blood donor screening is not warranted.

It seems that this is a "multi-laboratory study" that results mostly from efforts of the US Blood Work Group, which is the probable reason for the last line in the abstract.

I have not read the complete text, since it requires registration, and I also am not that interested (having already decided in 2009 I would follow the subject, but not try to read up on biochemistry or virology), though indeed it's also true I am myself neither up nor down as a result of the news, that probably will have a depressing effect on quite a few proponents of the "ME=XMRV" school of thought among patients, that is very prominent on the forum whose owners kicked me off from it in July 2010, after I protested the sheerest Wessely-rot in a sauce of neo-nazi styled thought from someone close to the heart and mind of CFS_since_1998 and Patricia Carter, since they defended his right to slander and abuse people with ME/CFS and denied me the right to protest, or indeed to read their forum.

So I also have not read anything from that forum, for which I am not sorry.

If you want to know more about it, there is a thread on Phoenix-Rising:

UPDATE: BLOOD WORKING GROUP

There also is a partial retraction by two of the authors of the original study, namely Silverman and Das Gupta, in the Journal of Virology:

Analysis of single nucleotide polymorphisms in XMRV patient-derived integration sites reveals contamination from cell lines acutely infected by XMRV

(...)
We analyzed xenotropic murine leukemia virus-related virus (XMRV) integration site sequences previously identified from human prostate tissues for single nucleotide polymorphisms (SNPs) to discriminate between patient and potential cell line sources of the proviruses. The SNPs of two integration sites were identical to those in cell lines but not the patients, whereas the data on the remaining 12 integration sites were inconclusive. Our results provide direct evidence for contamination during analysis of XMRV integration sites.

So... while this still does not refute the hypothesis that XMRV is the cause or part of the cause or the aetiology of ME/CFS, it is strong evidence that (1) it is difficult to ascertain ME/CFS patients are infected with XMRV to a larger or a different extent than others (first abstract), and (2) at least some of the findings of the presence of XMRV are likely to be due to some form of contamination (second abstract).

The reasons this is strong evidence are that (a) it is published in reputable journals (b) on the basis of what seems to be good research, that (c) involves the cooperation of the main authors of the original study that put forward the hypothesis.

What do I think of it? It seems to me to be the end of XMRV as the hypothetical cause for ME: Too much negative evidence, and notably by good researchers and real scientists who have no personal interest in not finding it, unlike some of the shrinks, like Wessely, who also reported "not finding it", in a paper that was bullshit from start to finish.

But this is different, and seems fairly conclusive and definitive, with the usual margin of error, to be sure. ("What is certain, is not empirical; what is empirical is not certain." Einstein, attributed.)

Personally, I can't say I am much affected, but then I have never believed that I had sufficient reason to believe that XMRV is the cause of ME/CFS, nor that it is not: I believed the finding was interesting and provided hope for more good biomedical research into ME/CFS.

Many patients who invested a lot of emotion in the belief that "ME=XMRV", as many liked to put it, will feel not so good. It is true that 'A wise man proportions his belief to the evidence.' (David Hume), but then it is also true that lots of folks on the ME-forums are not wise and do not know much science, and had a strong propensity to believe more than the evidence warranted.

Also, my guess is that people involved in the XMRV-studies, such as the authors of the original 2009 study in Science; the Whittemores; Lo and Alter; and others who believed this was probably the explanation for ME/CFS, feel at least somewhat depressed.

That would be human, but then they did do the best they could, and I have no reason to doubt either their motives or their abilities. A German woman put it thus on Phoenix Rising:

I registered on PR because of the Lombardi study. So did hundreds of others. We started connecting with others from around the globe. How many blogs have been started about ME since? How many media pieces have been published? How many researchers now say "I didn't know this disease before, but it's a serious disease that very likely has immune system/viral invovlement"?

This is *all* due to one family with a sick daughter doing what nobody else wanted to do.

If that's not a reason to at least admit they've done a lot of things right I honestly don't know what would be. Let's see how others will deal with their work being subjected to the same amount of scrutiny and politcs!

Indeed - that seems to me to be a just estimate.


(*) It is just that, so far as I can see: I have felt better the last months and have used that to do more - that urgently needed doing - and in consequence, probably also tied in with not having found a good dosage of the various supplements, have too much pain to get enough sleep, and too little sleep to get less pain. 

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

Update (later on the day): BBC-report on it.




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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