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  June 13, 2012                  
me+ME: Nederlog PAUSED (mostly) till July 2012 + Mikovits

I still have problems with my eyes, with which I have to take care, and decided for that reason (and some others) to pause Nederlog till July of this year, hoping things have improved by then for me.

In case there will be important developments, for me or more in general, I may write about it, which is why I put in '(mostly)'.


....the news just reached me that the criminal charges against Dr Judy Mikovits have been dismissed. The source seems to be her friend dr. Jamie Deckoff-Jones. (*)

I suppose it is true, but do not know of any reasons to dismiss these charges, though there is one that came to my mind that I have also mentioned earlier in Nederlog: That the value of the contested property - the notebooks concerning the XMRV-research at WPI - is very dubitable and probably very low at present. (**)

Here is some background in an earlier Nederlog of this year

me+ME: Mikovits vs Whittemores vs Deckoff-Jones

In any case, it seems to me to be a sensible decision, whoever made it and whatever the grounds, since there seems to be no obvious good served by prosecuting the criminal charges, while there also still are the civil charges.

Then again, I do not think either case will or would have shed any clarity on what interests me most, about the whole case about XMRV
that I myself gave  up totally on in October 2011, as a candidate for explaining ME/CFS, after reading Erv's and some other material:

me+ME: Two years of XMRV + recent personal e-mails

What is it that interests me most
, though my interest is academic? This:

What is the real reason that the paper of Dr Mikovits's group was published in Science, in October 2009?

I'll briefly explain, and assume my readers are at least somewhat acquainted with the story of the rise and fall of XMRV, Dr Mikovits and the WPI, and if not you can find out my takes on it in the Nederlogs of 2009-2012, through their indexes or summaries, and I will give my explanation with a liberal sprinkling of 'probable' and related terms.

Also, those who want to know more or refresh their memories can do so here, with a lot of background links, also to legal matters and to articles in Nature and in Science:

me+ME: Sorting through some evidence about dr. Mikovits

The above texts and its links should be able to provide the background for what follows:

It seems to me very probable, by this time, mostly because of the fine work the US Blood Work Group did (indeed with Dr Mikovits's collaboration, in the end) that XMRV was due to contamination, and does not occur in humans and is not dangerous to humans either (and therefore does not explain ME/CFS or other unexplained human diseases).

The reason that
the US Blood Work Group did so much work on  it is that until the above result was established, including the fact that Dr Mikovits and her group were not able to establish the absence or presence of XMRV beyond chance level, is that there was a genuine possibility that it was a dangerous retrovirus, which is what the original Science article also claimed, and what motivated a lot of scientific and media interest in both XMRV and ME/CFS, and also in Dr Mikovits and her group, and in the WPI where she and her group worked.

if it was contamination either this was known to Dr Mikovits and/or her group, or  it wasn't.  My own probability is that it was not known to Dr Mikovits and/or her group, and that they really originally thought they were onto something real, something important and something dangerous.

Then again, an important part of the reason
Dr Mikovits and her group managed to convince Science that they were onto something dangerous and important, is the picture Erv published in September 2011, that was produced with 5AZA, which fact was not mentioned to the editors of Science.

Here is a link to a Nederlog of October 2011 where I explain this:

me+ME: It's quite a MEss!

from which I quote part of an excellent reply by Dr Holm to a worried patient with ME/CFS:

Taken together, it is now very difficult to trust any data in the original Science paper. It appears to be a deliberate attempt to manipulate data, in a way that takes a laboratory artifact and makes it into a bona fide result. My guess is that the Mikovits group found some provocative preliminary data, as they ran some PCRs on their original samples and found (the contaminating) XMRV. They were so excited about the possible implications of this that they ignored/underestimated the possibility of contamination, and in the rush to publication they manipulated their data so as to look more robust and impressive and get the paper into Science. Everything since then has been a house of cards, built upon a very shaky foundation.

So, XMRV has nothing to do with CFS. While it is not out of the realm of possibility that some other viral illness, possibly even an endogenous human retrovirus, may have a role, any XMRV findings are likely artifactual. (And, while I am not an expert on this, the epidemiology of the disease makes a transmittable viral illness unlikely as the cause of CFS).

I know that the majority of the scientific community is sympathetic to your cause, and would like to determine the cause/origin of CFS. We are frustrated by this apparent case of scientific misconduct, and regret all of the time/energy/money wasted on this. Hopefully, one benefit of all of this will be to bring increased attention to CFS, and direct more scientific interest into actually finding the cause(s) of this disease.

This seemed to me then and seems to me now a fair summary that has the highest probability of being correct, including this bit, that is about the unrevealed addition of 5AZA to an experiment, that should have been mentioned, so as to avoid misleading Science's reviewers:

They were so excited about the possible implications of this that they ignored/underestimated the possibility of contamination, and in the rush to publication they manipulated their data so as to look more robust and impressive and get the paper into Science.

My own take is that the probability is high that this is correct, and my remaining problem is this, supposing  (as I think is very probable) this did happen:
  • Did this happen to help the patients, to cause more research, to protect the US or world population against another dangerous retrovirus, or did this happen to help the holders of XMRV-related patents, such as Dr Mikovits, Drs Ruscetti, and/or the WPI, or did this happen for both reasons?
I fear it will be very difficult to establish conclusively which of these three alternatives hold, and a court case, whether civil or criminal, is not  designed or fit to settle these kinds of questions.

The safest guess is the last alternative, which also is not really cynical (compared with the second) - though I should point out that whatever the truth is, manipulation of data is criminal in science, if not in a legal sense, then in a moral sense:

There can be no real science if scientists are free to manipulate their data, also if they do so on the pretext or with the excuse of helping something very important.
If you do that, as a scientist, you are not doing science but you are doing propaganda - which may be justified if you are right, but that you are right can be established scientifically only on the condition that the scientific research and reporting is honest fact finding, and is not a manipulative 'public relations' deception, dressed up as 'science' for profit.

Corrections, if any are necessary, have to be made later.
                             -- Jun 14, 2012: Corrected some typos, added some links, and two notes:
                             (*) It seems to have been Lily Meehan rather than Jamie Deckoff-Jones
                                  who made it public first.
                             (**) The decision is said to have been made by a Nevadan prosecutor, and
                                   can be undone. The present value of the contested property was not


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 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)
 Maarten Maartensz
ME in Amsterdam - surviving in Amsterdam with ME (Dutch)
 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 understa, but nds 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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