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Nov 24, 2011               

ME: WPI vs Mikovits - documents in the case: update

I have for the moment only some brief updates to yesterday's

ME: WPI vs Mikovits - documents in the case

and an interesting link to professor Racaniello's virology site.

To start with the updates.

First, I found out only today that I had not uploaded the files for yesterday's NL to my Danish site, though it was uploaded to my Dutch site. I've corrected it, and the cause is ME.

Second, the WPI have let it be known, on their Facebook site, that I never visit, because I don't like Facebook, that

"most of our property has been returned".

My source is

ERV Blog - XMRV and CFS - 30

and I would not be amazed if  this is part of a deal that belongs to the bail for dr. Mikovits, but then I am guessing, and do not have much of a clear idea about what will follow, since I know some but not much of US law, in practice and in theory. (And deals with the legal authorities are rather different in the US than in Europe and Holland.)

Third, dr. Mikovits seems quite culpable to me, both legally and morally, the last as regards patients' interests and as regards doing real scientific research, but some patients see this quite differently. For example, here is Rivka the activist, quoted from dr. Deckoff-Jones blog:

Until I know more about the situation, from what I can tell now, I agree with an earlier statement: Mikovits is our Robin Hood.

If Dr. Judy Mikovits stole the notebooks, she did so because she thought it had to be done to save the research. Research that she thinks could save our lives -- and save many many more in the general public who are not yet inflicted with our illness, but are at risk.

Rivka finds uncontestable proof that her heroine stole and lied - ergo, she reasons, that is proof her heroine is Robin Hood. Well...

Fourth, as the quotation shows, it makes sense to consider much that is currently happening around dr. Mikovits on forums for patients as a Real Life Cognitive Dissonance Experiment:

Cognitive Dissonance
When Prophecy Fails

Fifth, now that that "most of our property has been returned" to the WPI, the obvious question is:

What is in the lab books or notebooks that dr. Mikovits did not want others to see? (For it seems, again from dr. Deckoff-Jones's blog, that dr. Mikovits has said there is such stuff in it.)

It may take time to find; it may have been erased; it may not be very important, but it is an interesting question.

Sixth, having mentioned dr. Deckoff-Jones's blog: She wrote another article on it, called

Coming Clean

which I don't think she quite does. Here is its very beginning, also with a detail I mentioned above viz. there being material in the notebooks - now presumably returned to the WPI (?) - that Judy Mikovits thinks "others wouldn't want brought to light":

Let me start by saying that I did not know where the notebooks were, or even that they were missing, until the lawsuit was filed. If Judy did this, she didn't tell me. I knew how concerned she was about them and I can tell you as Judy's friend, she believed that, as the PI (principle investigator), she had a right to them. She had no legal representation until the law suit and the legal issues are very complex. There are issues with not just who owns, but who can even see the notebooks. She said to me that the notebooks documented mistakes that others wouldn't want brought to light, something she had only realized recently. In our communications, her concern was always for the research and fulfilling her promises to patients. There didn't seem to be anything she wanted or needed to hide for herself.

This is mostly the "She would say so, wouldn't she?!" variety of prose, I am afraid. I will not discuss it - believe as you will! caveat emptor! - except for noting that it seems to me disinginuous or false that dr. Deckoff-Jones believes that dr. Mikovits

believed that, as the PI (principle investigator), she had a right to

the things she stole. For clearly, if 'dr. Judy In Whom We Trust'TM really believed that, she would not have needed to steal them, unless indeed there is or was something in them she wanted to hide. And also, from what I read from people who know such things and have no reason to lie:

In the US as in Holland it is the institution that owns the research and the lab books and specimens, not its PI, and that apart from contracts between Mikovits and the WPI. So I do not believe that 'dr. Judy In Whom We Trust'TM - I quote a signitature of A True Believer on a forum, with a trademark added - believed that she has a right to own what she stole.

There is considerably more I could say about dr. Judy and/or dr. Jamie, but I won't here and now, except that it does not seem to me credible that dr. Judy stole the lab books etc. because she wanted to continue her research, as many patients seem to believe: That's about as sensible as sawing off the branch on which you're sitting. It seems much more likely that she stole the lab books etc. to hide or erase something, or else (but less likely: trying to save oneself is more common than trying to destroy others) to destroy the WPI.

Enough of dr. Judy and dr. Jamie for the moment. (*)

There is one more item I mentioned viz. professor Racaniello's virology site. He had the kindness to hand it over for a day to David Tuller, who earlier wrote good articles about ME/CFS in the New York Times, and who writes on professor Racaniello's site

Chronic Fatigue Syndrome and the CDC: A Long, Tangled Tale

The title is quite apt, but I read most of it, and mean to read all of it, and it is a good and informed exposition of the last decades around ME/CFS, especially in the US.

For persons with ME who are well-informed, it probably has little news in it, but then they also will probably will find little to disagree in it and much to agree, and it is good that the tale is on professor Racaniello's site, because it shows - among other things - how ill the CDC has been dealing with ME/CFS, how little funding there has been for good scientific research into the disease, and how that little was partially stolen or misspent by CDC-bureaucrats, and also how sorely patients with ME/CFS have been maligned, slandered, mistreated and denied help, over many years, and sometimes decades. The last may also explain why some of them can get quite unreasonable or irrational, even though it doesn't excuse it - and professor Racaniello no doubt is a more patient man than I am: He surely is another retrovirologist who deserves praise and thanks of the patients!

(*) Perhaps a note on a relevant difference: I do not know how much I believe of dr. Jamie's stories, but I do believe she and her daughter are physically ill, while dr. Judy is not physically ill, and that does make a considerable difference to me.

Corrections, if any are necessary, have to be made later.
-- Nov 25, 2011: I did add two links and corrected a few typos.

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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