December 20, 2010


ME+me: XMRV, ME and B12

I continue being not well, and otherwise also as before, so I cannot do much. But there is a little progress, and in my case and at present it has to do with B12. So here are some more links relating to ME, B12 and to start with news about XMRV.

1. XMRV claimed to be lab contamination
2. Good new video about ME and some useful sites about ME
3. Some more info about B12

1. XMRV claimed to be lab-contamination

Today - so was I informed privately, and indeed - there are five papers ready to be published in Retrovirology that all claim XMRV is due to lab contamination, indeed also as regards the prostate cancer link to XMRV. Here is a link to the first of these five papers:

The other four have the same link, except they are numbered 109-112 (rather than 108, as provided), and the reason to phrase it as I just did is that I found the site of Retrovirology very slow when I tried.

But in case you want to know: The abstract and pdf said to be prepublications are all there and they are free of charge (as they should be).

Here is a link to a UK based institute that seems to be named thus

Under the link (right upper corner) you find a paper with the title

"Chronic Fatigue Syndrome is not caused by XMRV
  New research shows XMRV virus is a lab contaminant"

It is quite plain and unqualified, in their reporting:

A virus previously thought to be associated with chronic fatigue syndrome is not the cause of the disease, a detailed study has shown. The research shows that cell samples used in previous research were contaminated with the virus identified as XMRV and that XMRV is present in the mouse genome.

XMRV was first linked to chronic fatigue syndrome – also known as myalgic encephalomyelitis (ME) – in a study published in October 2009, where blood samples from chronic fatigue syndrome patients were found to have traces of the virus. XMRV had also been identified previously in samples from certain prostate cancer patients.

The new study, published in Retrovirology, identifies the source of XMRV in chronic fatigue syndrome samples as being cells or mouse DNA rather than infection by XMRV. The research does not rule out a virus cause of chronic fatigue syndrome - it is simply not this virus.

The research team developed improved methods to detect XMRV against the genetic noise of other sequences and make recommendations for future study of virus causes of human disease.

“Our conclusion is quite simple: XMRV is not the cause of chronic fatigue syndrome,” says Professor Greg Towers, a Wellcome Trust Senior Research Fellow at University College London (UCL). “All our evidence shows that the sequences from the virus genome in cell culture have contaminated human chronic fatigue syndrome and prostate cancer samples.

“It is vital to understand that we are not saying chronic fatigue syndrome does not have a virus cause – we cannot answer that yet – but we know it is not this virus causing it.”

Not being a retrovirologist and never having pretended any knowledge in the field, I have since October 2009, when the relation between XMRV and ME/CFS became known through a paper in Science, kept mostly outside the debates (except when patients claimed falsely that it is known XMRV causes ME, for which see: Bloody stupid hysteria + lying and when Patricia Carter and others thought it a fine idea to infect the blood in blood banks with blood that is XMRV+, for which see: On infecting and storming blood banks).

So... what do I think? I have read but one of the five papers in Retrovirology mentioned above, but they may be right, up to a point, in that everybody who really knows about retrovirology agrees lab contamination is one possible explanation of the XMRV-findings.

On the other hand, the folks who originated the Science paper, and the Lo and Alter and co-workers who found MLV in patients with ME/CFS, also know retrovirology, while the group of Lo and Alter took much care to exclude lab contamination.

Besides, lab contamination does not explain why in the research that linked XMRV or MLV to patients with ME/CFS or prostate cancer found high presence of XMRV in patients, but around 4% presence of XMRV in their controls: If it is all due to contamination, it would seem that the rates of finding XMRV should be the same, all over the board, or else vary widely, without rhyme or reason. But repeatedly the rates of infection in patients and in controls were found to be very similar, which is a fact hard to combine with either chance or contamination. This does not exclude contamination nor chance, but the Sanger Institute surely overstates the case, on the present evidence: Even if there is contamination involved, much remains to be explained.

I am not, therefore, convinced, and indeed unkind enough to note that the Sanger Institute is UK-based, and the UK is a country whence much pseudo-science relating to ME/CFS has been produced by - provable! - scientific frauds like Wessely and White. But then my remark is not meant to defame the Sanger Institute, but only to register that it is not unlikely they are being loyal to professors Wessely and White, their dear colleagues, as also would be very human if not very scientific indeed.

Also, I note that it seems to have been quite like this in the early days of HIV (the existence and/or causal role with regards to Aids is still contested by some medically qualified folks), so that what I most expect is a protracted debate between those who found XMRV or MLV and those who did not find it.

And at the moment I am most interested in hearing from doctors Lo and Alter, who found MLV in patients with ME/CFS, and took much trouble to prevent lab contamination, and from Dr. Lipkin, who was assigned by the NIH the task to investigate the matter, and whose report was promised for this month.

In any case: I would recommend my readers with ME, or with someone they care for with ME, not to loose heart: Even if the XMRV-explanation were to be killed effectively - and I am by no means convinced it has been, or will be, though it may - the situation for patients with ME is still better than it was for the over three decades I had it, until in October 2009 the XMRV-explanation was published in Science.

2. Good new video about ME and some useful sites about ME

LaurelB, whose blog Dreams at stake I like and who made an impressive video testimony. about ME/CFS made a new video about ME which is a fine and clear summary of where it stands late in 2010:

If you are well informed about ME/CFS, you won't learn anything new, but if you are not, you get a very clear sum up in slightly over 4 minutes (that took LaurelB more than 4 months to produce: she has severe ME).

And I found the last days two useful sites about ME, both concerned with research into it:

The last seems quite well done and is new, and in Dutch, with this Dutch intro stating why it exists:

Deze website/blog is bedoeld voor sceptische M.E.(cvs)-patiënten die niet zomaar aannemen wat artsen, onderzoekers, paramedici en andere -peuten over hun aandoening en herstel vertellen.

Het is ook bedoeld voor de arts, researcher, paramedicus, -peut die durft toegeven dat zijn opleiding haar/hem ook niet alles heeft geleerd en kritisch staat t.o.v. wat de beleidsmakers, de media, de farmaceutische/diagnostische industrie voorkauwen.

Een ander doel is relevant wetenschappelijk onderzoek te initiëren.

Hier zullen (hopelijk) regelmatig nieuwe stukken te vinden zijn of relevante, ietwat oudere literatuur worden hernomen.

Having only recently found it, I can't say much about either site, but the Dutch site seems to contain quite a few (partial) translations of research written in English, and both should be interesting for those wanting to see scientific articles relating to ME/CFS.

3. Some more info about B12

I wrote the last time - Some useful links about ME+B12 - i.a. about B12 and gave quite a few references, including this long thread on PR-F:

This is 177 pages at present i.e. some 1770 posts. Over the last two days I managed to read and excerpt over 1400 of them, no doubt thanks to the B12 I take since December 1, for else I couldn't have managed and indeed wouldn't have started.

People who know me can mail me for the excerpts (600 Kb at present, so still a long read, if you want to read all of the excerpts), though I should say that most you need to get the idea and the protocol is in the first 7 pages of the above linked thread.

If you think 1770 posts is a lot to read through (it is), here is a far longer thread about B12, that is quite interesting, and contains most of the background about B12:

Note this has not a mere 1770 posts, but presently all of 27,196 - for which reason advice I read on PR-F, namely to start at the end rather than the beginning, probably is helpful. In any case, there is a great amount of information about B12 there.

Also, there is the following very useful start, for those who want to peruse the 12,196 pages with some sort of primer in their minds, of a mere 3 pages:

Also, the last two links are on a quite interesting site:

This seems to have a lot of interesting information related to medicine and - indeed - wrong diagnoses of many kinds.

There are more interesting links relating to B12, but the above links are a lot of text, and most information I found is already to be found in the links in my Some useful links about ME+B12 of the day before yesterday.

There is one thing to remark, though, which relates to what I said in the last link, and the treatment protocol freddd offers in the first pages of B-12 - The Hidden Story.

My remark is this:

Freddd's protocol is a fairly radical one, based on his own experiences, and quite a few who followed his advice, with various effects, and you should be aware that, if you have ME and want to try the protocol, there is an appreciable chance that on Freddd's protocol you start getting worse before you get better. This seems to be a consequence from the protocol Freddd favours and also seems to be reversible by stopping the protocol, or taking considerably less than it recommends.

If you want to run the risk of getting worse, then that is your privilege, but you should be aware of the risk, and be certain that you can run it, basically because you know you will be helped in case you need it.

As I have no such knowledge, I cannot run the risk, and also I like to use the clues my own body gives: If it hurts, don't do it, if you can - unless indeed you must, as when a major operation is necessary to save your life.

And as it is for me at present, it seems that I have found a supplement that is more effective than any I used so far - and I used megadoses of vitamins, especially B, C and E, because it seemed to help me, and such statistics as I gathered supported that impression quite well - and personally I want to take it carefully from there, and indeed experiment further and discuss it with my doctors, because it helps me, and is based on good basic biochemistry (*) and I should also like to have it prescribed if possible at all, so that my insurance pays it, rather than that I have to save for it from the dole I receive.

(*) Much rather than fraudulent pseudoscientific bullshit of my fellow Dutchmen the egregious Bleijenberg and Van der Meer, whose own congame is based on the fallacy of appealing to authority: 'Look you, I Am A Scientist - Believe Me that You Are A Dysfynctional Thinker: Go take psychotherapy and exercise'. I oppose my own authority: Look you frauds: I have had the same education as Bleijenberg, being educated at a Dutch university at the same time as this fraud and conman - except that my education was more scientific than his (since I found out soon enough that psychology is for the most part hardly a REAL science):

Gijs Bleijenberg is a despicable fraud, a liar, a conman, a cheat, and a betrayer of science. I can say so because I know at least as much psychology as he does, and much more science and mathematics and philosophy and methodology than this major ignoramus. Besides, I am far more intelligent and erudite than he is, older, and far more honest and far more moral - for I usually say so when I don't know something, so very much unlike scientific frauds and conmen like professor Bleijenberg, and also I did not help drive several tens of people with ME into suicide by my published fraudulent pseudo-science, as Bleijenberg did, that only served his own income, his own career and his own status, at the cost of the healths and lives and many years of pain and discrimination of untold many Dutch ill people, that according to this fraud from the Radboud University were not ill, but malingerers, or unable to think as well as he can (!!), this greatest of all impertinent and lying academic idiots I have read. What a horrible moral and intellectual creep!

P.S. Let me add here what I think is considerably more likely than not, also looking back on my own experiments with and statistics about the B-vitamins that I did take in megadoses in the 1980ies because they seemed to help me with what ailed me (which I then did not know to be ME):

It seems highly likely to me that B12-deficiency is involved in ME/CFS, and that supplementing it in a high enough dosage will help many with ME/CFS - but I do not have any dogmatic notions about its causal role in ME/CFS nor about whether supplementing B12 will eventually cure it.

As to the XMRV=Contamination issue:

-- 21.15, 20 Dec 2010: I just saw there is a good post by Neuroskeptic on the topic, who ends with the same question I formulated and, as usual, sounds quite sensible and informed:

And there are various threads on PR-F, such as this:

P.P.S. It may be I have to stop Nederlog for a while. The reason is that I am physically not well at all. I don't know yet, but if there is no Nederlog, now you know the reason.

As to ME/CFS (that I prefer to call ME):

1. Anthony Komaroff

Ten discoveries about the biology of CFS (pdf)

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

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