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Oct 28, 2011      `

me+ME: News from Annette W. and from Judy M.



Yes, I am still around but didn't write anything for my site the last few days because I am trying to write some on probability these days, and I have only that much energy next to so much pain.

So I'll keep this brief as well. I could have written more on the DSM-5 - for which see Suzy Chapman's site: DSM-5 and ICD-11 Watch - and also about other themes, notably the economical crisis (see the link for the series, mostly in Dutch) or about recent developments in Dutch ME-land, or about Since's disappearance from the forum he banned me from, or indeed about yet other matters,  but instead I'll continue the - let's say - XMRV-news, because there was a recent appearance of Annette Whittemore on the Nevada News show, and a letter from Judy Mikovits, or at least her husband.

1. Annette Whittemore on Nevada News

I didn't see this, in fact, though I might have, but the transcript of it reached me first, and here is a link to it, on Khaly Castle's site:

       - Nevada Newsmakers Annette Whittemore Interview–Transcript

I think it is mostly PR-talk, but then I don't especially mind this although I am certainly no lover of PR-talk: In the circumstances, Annette Whittemore could neither remain publicly silent, nor give the undiluted truth (or what she thinks that is) to the public, many of whom wouldn't believe it if it came with God's own or even Gerwyn's personal guarantee, and so the best one could get was an exercise in public relations. I suppose the gist is in this exchange, near the end of the interview:

Sam: Alright, so I always like to ask you to tell the folks out there who are watching, literally all over the world, what your advice is to them about where everything sits at this point in time.

Annette: Well I think my best advice is to be able to remain calm, and to be reassured that the changes don’t mean that anyone’s going away, or that any way our commitment has been lessened.

The link is above, and I won't discuss the rest of it, except that to the extent of my knowledge (none that anyone else with internet could not also find), I see no reasons to distrust or dislike the Whittemores, as quite a few on the forum I am banned from seem to do, from what I have read from it (not much, for I am not interested in True Believers and their baloney), and as usual for no rational reason I can agree to.

2. Judy Mikovits on Jamie Deckoff-Jones's site

Unlike Gerwyn and V99, I don't know everything, and in particular I don't know where the following letter or mail by, about or for dr. Mikovits - I explain these circumlocutions in a moment - was first published, but to my knowledge it first appeared on dr. Deckoff Jones's site, in the comments, at October 27, 2011, 9.45 am:

Lilly Meehan said...

A letter from Dr. Judy Mikovits to all ME/CFS patients, families and advocates

Many of you have asked, "where is Dr. Judy Mikovits and what is she doing? Is she still doing research? Where can we go for testing?"

Dr Judy Mikovits remains passionately committed to the patients and to a search for treatment and a better life for all of them.

She refuses to compromise her integrity or the truth in a search for causes and treatment of disease. It is unfortunate, yet a sign of the society we live in, that politics and personal gain have interfered with science and the attempts of committed researchers to pursue the goal of scientific research.

Dr Mikovits is pursuing opportunities with a variety of new research institutions and collaborations which show promise to continue in her research and to provide patients with new resources for diagnosis and treatment.

She will make this information available on public sites for all patients to access and participate as they choose.


Dr. Mikovits is no longer with the Whittemore Peterson Institute and has no role or responsibility for any of the activities of the Institute and never had any role in the clinical laboratory (VIPdx or Unevx)

All patients or other individuals who wish to contact Dr. Mikovits may email via:

Lilly Meehan at:

LMeehan93003@aol.com

I reproduce it as I found it under the link, and have since been informed that the reason that it sounds odd and as if From On High is that the real author is dr. Mikovits's husband.

I could say various things about this, but keep it to two extended points.

First, as to this sentence:

It is unfortunate, yet a sign of the society we live in, that politics and personal gain have interfered with science and the attempts of committed researchers to pursue the goal of scientific research.

I am sorry, but I miss the evidence for that. If indeed the appeal to "the society we live in" makes sense, presumably one can trust no one or very few, which eo ipso makes this also not credible.

Next, where is the evidence "that politics and personal gain have interfered with science"? I see none: The Whittemores certainly cannot have gained much or anything by the previous two years of XMRV-brouhaha, though they might have expected to do so two years ago, but no longer today; while the Ruscettis, and maybe Mikovits herself, who seem to owe XMRV-patents they may have expected millions from, only have a very small chance to profit from these in the present circumstances, where anyone who seems really knowledgeable about retroviruses - sorry, Gerwin: not you - holds that the XMRV-findings are due to contamination.

Then again, speaking of evidence, about the logic of which I know a lot, and about XMRV and retroviruses, about which I know little, as I have said from the beginning, unlike attested geniuses like Bob and Gerwyn, who believe they know all about it, and more than such retrovirologist dumboes like professors Racaniello and Coffin and Levy and Silverman, what does strike me is especially the following.

What impressed me in October 2009 about the paper by Lombardi, Mikovits et al were three things:

1. It was a possible explanation of ME/CFS that I have, with medical diagnoses and all, since January 1, 1979, that had never struck my mind as possible and plausible at all - but then I am not a medical man nor a retrovirologist: My degrees are in psychology and philosophy.

2. It was published in Science, which is a scientific journal with a very high reputation, which made it likely it was reviewed by quite capable retrovirologists and others, and gave it a high probability it was real science.

3. It came with a highly significant finding: Some 67% of persons with ME/CFS had been shown, by the authors of the paper, to be infected with XMRV, as compared with some 4% of persons who did not have ME/CFS.

Since then, the editors of Science have partially withdrawn the paper, and seem to be bend on withdrawing all of it; the BWG (Blood Working Group, US government funded), it turns out, has been following XMRV for two years, because of the considerable dangers if indeed XMRV does cause ME/CFS and is in the blood supply, and has established - with the agreement of dr. Mikovits, who was one of the authors of the paper of Busch et al for the BWG - that dr. Mikovits and her coworkers in the WPI could not distinguish blood with XMRV from blood without it.

And therewith above points 2 and 3 are completely void, while as to point 1 nearly all retrovirologists and medical people seem convinced, from what has been found and not found over the past two years, that XMRV is probably a lab-contaminant, and there is, given the demise of the other points, and what was found, no particular reason to hold that XMRV is dangerous for human beings, nor any particular reason that it is involved with ME/CFS.

I think even dr. Mikovits agrees with most of the above, or else she wouldn't or shouldn't have signed the paper of the BWG as co-author.

For me, as a patient with ME/CFS, with a fair to good understanding of real science, but with no degrees relevant to this research, it seems over and done:

Dr. Mikovits and her group at WPI could not find XMRV in blinded samples beyond chance-level; others couldn't find it, also if they were capable retrovirologists without any co-authors with interests in not finding it; there is no special reason to hold XMRV is a plausible explanation for ME/CFS, apart from the finding that was mistaken, as indeed dr. Peterson, who does know very much about ME/CFS, has been saying for quite a while; all professors of retrovirology that I know of have come round to the view that XMRV is a lab-contaminant, even if some thought otherwise in 2009; and the editors of Science believe the paper by Mikovits and Lombardi et al should be retracted.

Of course, one can insist that XMRV (HGRV, MLV) IS the cause of ME/CFS till eternity - but what one is then saying in effect is that lots of reputable professors in retrovirology, all without any special interest in finding that XMRV is or is not the cause of ME/CFS, do not know science, nor does dr. Peterson, dr. Hyde and others know about medicine or ME/CFS, nor do the more than 20 authors of the BWG-paper know science or retrovirology (apart from dr. Mikovits, of course), and indeed one may hold till eternity that Gerwyn and V99 are the reborn Jesus and mother Mary from the MECFS-forums, and one ought to believe them, for they claim to KNOW, and they are beyond all lesser mortals in intelligence, knowledge, honesty and integrity, and you, like all their proud followers on that forum, should believe so, even if you have in fact never met them in the flesh, never talked to them, and do not know anything about them except what they divulged on public forums.

To me it seems that if this is what one thinks, one should completely give up on real science and real medicine, and start prayer-meetings. (For the faithful, anything is possible, and scientists anyway are probably from the devil.)

And to conclude my comment on the statement: It seems to me that the work of the BWG, as reported here

- PR-F: XMRV Webinair - Results of BWG
         - Q&A Video and Slides

is an example of real and good science, and indeed dr. Mikovits was part of the group of its authors, so I don't see why her husband now writes

It is unfortunate, yet a sign of the society we live in, that politics and personal gain have interfered with science and the attempts of committed researchers to pursue the goal of scientific research.

Surely, her co-authors of the BWG-paper were honest and competent, and had no expectation of political or personal gain? And if not, why did dr. Mikovits sign the BWG-paper?

Second, there are quite a few things that strike me as odd about the above mail or letter:

- Why did dr. Mikovits's husband write it?
- Why does dr. Mikovits use an ill patient's email for contact
   with the world?
- Why does dr. Mikovits imply that who disagrees with her
   is concerned with "politics and personal gain"? As to gain:
- What were the financial expectations for the XMRV-
   related patents that the Ruscetti's owe in November 2009?
- Why could the Mikovits-led group at the WPI produce no
   more than 15 samples of ME/CFS patients' blood with XMRV
   if they claim to have researched hundreds or thousands the
   last two years?

I could ask more and suggest more, but I won't: I am ill and I cannot see any reasonable hope for any rational explanation of ME/CFS in terms of XMRV (HGRV, MLV) nor any reasonable expectation that dr. Mikovits will find a position in which she can continue her research nor any decent chance she will get funding.

So XMRV is dead as a reasonable and fund-raising hypothesis for ME/CFS. It or another related similar virus may still turn out to be important to public health, but so far as I can see, the scientists in the BWG were sincere, capable, and honest, and have no personal interest to deceive, and they seem convinced that at least XMRV is not by far as dangerous as it was feared to be.

Therefore, for me the probability is that XMRV (HGRV, MLV) is just as relevant to ME/CFS as it was in 2008: Not at all, on any known grounds, for all evidence that it might be has collapsed.

And while it is still, as it was in 2008, remotely possible that some retrovirus is somehow involved with ME/CFS (or subgroups of people with that - presumed or actual - diagnosis) and may be capable of explaining it (or a subgroup of those with presumed ME/CFS), that is at present a mere and remote logical possibility without any specific good known reproducible evidence.

 


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


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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