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Oct 3, 2011           

me+ME: Exit dr. Mikovits?

There was interesting news this morning in my mailbox, and it probably is not good news for patients with ME, or least not for that subset of them who invested hope or money in the WPI and in dr. Mikovits.

It's a bit difficult to say, though, since at this point in time the news comes from only one source, which is dr. Jamie Jones's blog. Here is a link to the relevant blog, dated October 2:

Square one (by Jamie Deckoff-Jones M.D. on X Rx blog)

Here are three bits from the beginning of that blog:

Breaking news. The entire WPI research program has been closed by the institute's CEO, and the facility is now locked down. It's former principle investigator, Dr. Judy Mikovits, is in active discussions concerning institutions to which she may move to continue her grant-funded research.
So now, on top of everything else, a divorce at the WPI. Yet to come are all the things that can happen in such messy situations. Meanwhile, there is no Mikovits-led research at the WPI or any research institution at the moment.
Here is the reality and the context for why I write this particular blog entry: My email inbox is filled with so much pain and confusion, as patients try to figure out what the BWG study means to them. I feel it is my obligation to both these patients and the larger community to share my opinions. I think what the BWG results mean is that all the XMRV/HGRV testing done at VIP Dx has been and is now null and void.

Note these are in the order they are in the original, but I have excised some text, as indicated by ellipses.

Also, it's none to clearly stated, while dr. Jones is a party to what she calls "a divorce at the WPI", and is personal friends with dr. Mikovits.

She also is - in case you missed that - a medical doctor who has ME/CFS, as does her daughter, who decided to use anti-retroviral medicines, in the hope this would help, and who claimed some successes with that.

Finally, at the moment dr. Deckoff-Jones is the only source for this "divorce at the WPI", and seems to act on her own.

Now let me consider the three parts I selected.

(1) The first seems to say Mrs. Annette Whittemore has stopped the research at WPI, and seems to be dismissing dr. Mikovits - or at least that seems a fair interpretation of what the first part says.

Others agree - and there are two threads about it on Phoenix Rising, of which this seems the main one:

- Square One: WPI closed down; XRx blog, 10/2/11

And meanwhile it says in that thread that the WPI's Facebook pages (that I never visited, since I dislike Facebook) have been closed "for updates/changes".

I suppose there is more behind it but one relevant consideration is that it is, at least since the recent article in Science, by Cohen and Enserink, far from easy for the WPI to attract funding for research.

(2) The second is part of my reason for interpreting the first as I did, and is unfortunately metaphorical, in that it talks of "divorce".

But it is clear in stating that dr. Mikovits stopped doing research, and I suppose the term "divorce" is used because personal relations went sour.

(3) The third sounds noble, but it would seem to me that much of the "pain and confusion" patients suffer from at the moment is mostly their own doing: They chose to believe something that probably is not so. That they chose to do so is quite understandable on a human level, but that does not make it a rational choice.

As to dr. Deckoff-Jones's

"I think what the BWG results mean is that all the XMRV/HGRV testing done at VIP Dx has been and is now null and void":

That seems to me not quite what follows from dr. Mikovits' statement about the results of the Blood Work Group she helped producing:

"The conclusion of the Blood Working Group was that we don't have a reproducible assay to detect XMRVs in the blood" (dr. Mikovits)

That is not worded as being about the tests used and sold by the VIP Dx, but seems to be worded as being about the tools used by the WPI, from which - it seems - the tests offered by the VIP Dx were derived.

Anyway... this probably will get clearer in the coming days.

One possible outcome that I hope will be avoided is that dr. Lipkin's research can't go through as planned, as I understood it, if the WPI keeps its research labs closed.

It would be nice to know what really happened, if only to squelch speculations.

Meanwhile, let me note this is from 15.20 local Dutch time, and I put in the time because I may get some more information today, that then will end up in this file later today.

Interesting times we live in - and locally the stockindex also radically fell...

Update at 21.25 local time: Update, from Amy Dockser Marcus at the Wall Street Journal:

Scientist Who Led XMRV Research Team Let Go

Here is the first paragraph:

Judy A. Mikovits, the embattled scientist who led the research team that found a possible link between the retrovirus XMRV and patients with chronic fatigue syndrome, has been terminated from her job as director of research at the Whittemore Peterson Institute for Neuro-Immune Disease in Reno, Nev.

And here the ostensible reason:

In a letter from Whittemore Peterson President Annette Whittemore to Mikovits, which was reviewed by Health Blog, Mikovits was terminated after refusing Whittemore’s direct request that cell lines be turned over to another scientist at the institute who wanted to do research on them.

In a letter of response, Mikovits said that the cells were for use in a specific NIH-funded project and that it would be inappropriate to use them for another purpose without her knowledge and consent.

As my terms "ostensible reason" and Ms. Dockser Marcus own last paragraph - not reproduced here - show, there may be more to it, and there may also be a disagreement about funding: Whether the WPI retains the government's funding for research, or whether dr. Mikovits takes it with her.


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)
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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