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Oct 14, 2011           

me+ME: Mostly about dr. Mikovits

As I wrote yesterday:

I am once more caught in the vicious circle of too much pain to be able to sleep (more than 4 hours or so) and too little sleep to get less pain. Been here before, since 33 years, so it's not necessarily terminal, but it is quite unpleasant.

As it happens, I did get a bit more sleep, but not much, so this will be another brief Nederlog, but not as brief as yesterday, and with four subjects:

1. Good post on PR-F
2. On dr. Mikovits latest mail (Oct 11)
3. On dr. Mikovits October 11 talk
4. Endnote

1. Good post on PR-F

Alas, I don't read that many well written scientifically informed posts on Phoenix Rising, so I am glad to provide a link to one that is, by somebody who calls him or herself "biophile" (I think it is a she, but I don't know), with the enticing title

  Are we PACE critics just a bunch of stupid angry c*nts?

It's not just about the PACE trial but also about the ERV-blog, of which the issue of September 29, with currently 1065 comments is here:

ERV Blog September 29

As I said, there are currently more than 1000 comments, of many kinds and qualities, but it makes for interesting reading, and it also seems to me that most writing there who are (retro-)virologists, indeed like Jason who was commenting of dr. Deckoff-Jones blog, and Billy. who was commenting on the MECFS-forum I am not allowed to read by the owners, who both are virologists (Jason and Billy, of course, not the owners of that forum), are quite rational and quite reasonable, and that, in Jason's and Billy's case, against rather a lot of irrational and unreasonable criticism.

Incidentally, my own take of it all is mostly here, written after precisely two years of XMRV-events:

Two years of XMRV + recent personal e-mails

2. On dr. Mikovits latest mail (Oct 11)

Here is a mail from dr. Mikovits "to the world" of October 11, last, with my comments. The text of the mail, that I give all (as I receicved it from someone who sent it to me) is in blue and indented, and my comments are in black and not indented

I am writing this note today to reassure everyone who consented into the Research program of the WPI including but not limited to the 5 year R01 pathophysiology of ME/CFS, that as Principal investigator, I have the legal right to continue that research at another institution and to take with me the samples and materials and supplies purchased for the sole purpose of that research.

So she says, and maybe so. But it is not at all clear this applies to funding for the project at WPI - in fact, according to a text about the grant I saw by way of the ERV-blog, the grant is to the institution (here: WPI) and not to the project leader (here: dr. Mikovits). Also, it doesn't seem very improbable a judge may produce an injunction that takes over the "materials and supplies", for example, because dr. Mikovits herself appeals to her "legal right", and because she has been fired by the WPI while there are many problems about the Science article of 2009.

Since the sudden closing of the WPI research program on September 30th, I have been in active discussion with several institutions who are enthusiastic about the opportunity to participate with me in this important research.

So she says, but I doubt it: Whatever the truth (1) she is damaged goods and (2) most of her nominal colleagues believe - it seems - that she's a fraud or if she is not there is no evidence for as much as a correlation between XMRV and ME/CFS, since dr. Mikovits herself and her group at the WPI were not able to distinguish positive and negative blinded samples on better than a chance-level. It follows - for anyone who is somewhat familiar with how universities and academics work - that any university would take a big risk hiring her, or even just allowing her to use a lab.

I strongly encourage you to voice your support by emailing me at jamikovits@gmail.com.

Not a good idea, even if she is blameless, since the support she will get will be described as nutters, and these will be mostly patients, quite a few of whom are emotionally fragile because of the recent events around dr. Mikovits. I suppose she wants support against the WPI, that she may start a court case against, for wrongful dismissal, but I do not think she should involve patients.

As you know, your consent form stated that you could withdraw from these studies at any time. The funding agencies need to know that you will withdraw your consent if the research is not done under my direction and thus two years of precious samples and resources will be wasted.

I don't think that is ethical. The first statement is irrelevant. The second statement is in fact an invitation to her supporters to wreck whatever research the WPI might want to do. It also may be she wants to get the samples and lab-books before others get them.

It is unethical, because if she is right about her hypothesis about XMRV/HGRV/MLV/whatever, somebody else with the requisite qualifications can bring that out as well as she. Here is Peirce's number one law for scientists and science: "Do not block the road of inquiry!". She does, for her own interests.

Emails from participants in support of me continuing my research will greatly help me.

So she says, but I don't believe it. Incidentally, I have read a little up on Wakefield, namely the Wikipedia and Brian Deer's site, the journalist who stopped him. I can't really judge it, but I do note a parallel: Wakefield took out a patent on a preparation of his own inoculating for measles, before attacking the existing inoculation-program, and seemed to have expected to make millions from it. The Ruscettis also have patents. It may be a coincidence, but it is suggestive.

I deeply appreciate not only your participation in my research but also your ecards, emails, encouragement and most importantly your trust in my integrity during this difficult time.


No doubt about that, but that is the only undoubted part of her missive, and I do not trust her integrity. I like to be wrong about that, not so much for my own or her sake, but for the sake of patients who believed in her, but I am afraid I won't get the evidence that I am wrong, since if it existed it had been produced a week ago at the latest.

3. On dr. Mikovits latest talk (Oct 11)

The previous item was from October 11, and at the same place and time dr. Mikovits is said to have written the above note, she held a talk, of which I was sent a summary, that I give a similar treatment and formatting as the note.

I should say the summary is not by dr. Mikovits

Presentation Summaries from Tullamore Conference 2011 by The Academy of Nutritional Medicine (AONM) on Tuesday, October 11, 2011
Dr. Judy Mikovits MD

I think the person writing or editing the summary confuses a Ph.D. ("Dr.") with an M.D. ("Medical doctor", not necessarily with a Ph.D.). Dr. Mikovits has a Ph.D. but no medical degree to my knowledge.

Virological and immune evidence of Human gamma retrovirus infection in M.E.
On the second anniversary of the publication Dr Judy A Mikovits presented a paper regarding evidence supporting infection of ME patients with Xenotropic MLV-related viruses at the Fibromylagia ME conference in Tullamore, Ireland. Dr  Mikovits explained the recent finding that DNA samples described in the 2009 Lombardi et al. publication were found to be contaminated

Well.... as indeed is consistent with her agreement of the BWG finding she effectively admits contamination. It follows there is no reason for patients with ME/CFS to be interested in XMRV (HGRV, MLV), for the simple reason that there is no evidence that it is in any way involved with or correlated with ME/CFS.

[...] with an XMRV virus clone named VP62. The reporting of incorrect viral sequences explains why the experiments designed to replicate the PCR data described in the Lombardi et al. paper have given negative results in many laboratories.

I doubt it virologists see it thus. In fact, quite a few who seem quite capable bitterly complain that dr. Mikovits and dr. Ruscetti for two years (1) failed to mention a chemical they used to produce their results, while (2) accusing other virologists for being incapable to find XMRV, that they found (if they found that, and not something else) as a result of using the unmentioned chemical. See e.g. "Why does 5AZA matter" on PR-F, written by Lee, who argues well and knows a lot about virology.

Dr.  Mikovits described the detection of gammaretrovirus protein directly from un-manipulated plasma, direct isolation of gamma retroviruses from blood cells of ME/CFS patients shown clearly by electron microscopy, cell-associated and cell-free transmission of virus to uninfected primary cells and cell lines, antibodies against an envelope protein derived from a murine leukemia virus in serum of CFS/ME patients.  In the 2009 work, serum from more patients than controls exhibited antibodies against the viral envelope protein.  These findings are not affected by the errors in Figure 1 and in the virus genome sequencing and in fact explain discrepancies in Figure 1 and the protein/antibody data shown in the paper.

I suppose the virologists will object that these are mere claims, about unpublished - claimed - findings.

   Individuals whose immune systems have made antibodies to a gammaretrovirus envelope protein have been exposed at some time to similar polypeptides.  The identity of the proteins that elicited in the antibodies is not presently known; all that is known is that they are highly similar to proteins known to be present in gammaretroviruses.

Which makes it metaphysics, I'd say: There may be something that is similar to gammaretroviruses - perhaps not even a virus or retrovirus, I suppose - that may play a role in the ME/CFS. But that's all old totally speculative hat.

What matters in fact and in principle is that she admits the Science paper is unfounded.

 Dr Mikovits described how XMRV has suffered from an issue of nomenclature.  Dr Mikovits and colleagues used XMRV to mean viruses with sequences similar to the virus reported by Urisman et al. in 2006 to be present in prostate cancer tissues.  However,  XMRV has come to mean only the sequence of the virus molecularly cloned (but not isolated) in 2006 and the nearly identical viruses that have been found in some cell culture lines.  In order to clarify nomencaltrue for future research on gammaretroviruses, Dr Mikovits proposes referring to gammaretroviruses detected in humans as HGRVs, human gammaretroviruses.

But that is pure speculation. And the nomenclature bit seems nonsense to me: She used the term, and admitted in the beginning that what's she used it for is not present in the way she claimed it was present.

Although it is known that a variety of gammaretroviruses can infect human cells in culture, further work is needed to determine whether one or more gammaretroviruses infect humans and whether they are associated with neuroimmune diseases including ME and Fibromylagia.

I said it is metaphysics, or if that is clearer to non-philosophers (*): science-fiction without any good evidence: As is, all of this is mere speculation, mere possibility, and only one of many possible hypotheses that would (possibly) explain ME/CFS.

Dr Mikovits research is performing serological studies that will be able to determine the proportion of the patient and healthy populations that have been exposed to gammaretroviral proteins and have mounted an immune response, even if the gammaretroviral proteins are not identical to those in the XMRV sequence, VP62.

At the very best that's a very pious purely speculative hope.

Judgments on the value of future research on gammaretroviruses in neuroimmune diseases CFS/ME and Fibromylagia must await further research utilizing uniformly collected samples from carefully chosen patients and controls.

So... back to before 2009. If she is honest.

And she probably knows a good part of the forums reads her every statement as if it were revealed religion.

4. Endnote

As I argued on the basis of the above, that seem to be mostly dr. Mikovits own words, at best - and if there was no fraudulence, no dishonesty, just some mistakes and some acrimony between virologists and quite a lot of misunderstandings by patients and others - the Science paper of 2009 that started the XMRV-hullabaloo was based on contamination, and there is no evidence for even a mere correlation between XMRV and ME/CFS.

What remains is only dr. Mikovits's speculations, if she is honest, that are not believed by most of her colleagues, who are the only ones capable of judging her work on the basis of relevant scientific knowledge.

To me, it seems the end of XMRV for patients with ME/CFS, as an interesting hypothesis for their disease, although it still seems desirable to me that dr. Lipkin's planned research will be done, to clarify things as much as possible, and come to a sensible conclusion, which must remain provisional as all empirical science ("If it is certain, it is not empiricall; if empirical, not certain." Einstein), but that also can stand as the best possible guide in the circumstances about the status of XMRV for public health.

Then again, in the circumstances it is quite possible dr. Lipkin may not be able to do his work, since dr. Mikovits has no laboratory and no job as a researcher, and there probably will follow quite a lot more of scientific, legal and moral discussions, e.g. in Science and Nature, and possibly also in court.

(*) In analytic philosophy and philosophy of science qualifying something as "metaphysics" is tantamount to saying it is unfounded and (at the moment) untestable  speculation at best, and probably false (since most unfounded speculation is false).

P.S. Corrections, if any are necessary, have to be made later. Also, this is not the text I intended to write, which may come later.

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 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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