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Oct 4, 2011           

me+ME: It's quite a MEss!


Continuing from yesterday, entitled "Exit dr. Mikovits?" I can add that dr. Mikovits was fired from the WPI. Here's the ostensible reason, as given by the WPI:

'The Whittemore Peterson Institute is announcing the departure of Dr. Judy Mikovits from WPI. We wish to thank her for her previous work and commitment. The WPI remains committed to a comprehensive research program. Our research team and program remains active, and our lab open to authorized employees. We will continue the critical work of finding answers to M.E. and related diseases. We will use the opportunity created by the departure of Dr. Mikovits to do a full evaluation of our research lab and current research projects. WPI is dedicated to the highest standards in research and patient care, and to advocating for the patients, families and caregivers we exist to serve.'

This doesn't clarify anything much, but at least it is a public statement by the WPI that dr. Mikovits doesn't work anymore for them, nor indeed speak for them.

Otherwise, there are - so far, today - two pieces of news, both messy, or messing up the Lombardi, Mikovits et. al. article in Science of two years ago. Neither source is much liked by ME patients, who don't like the aspersions on their character and illness from these sources, I think with some justice, but that doesn't necessarily mean they are mistaken, nor does it mean that they are right, indeed.

The first source is Trine Tsouderos, who is a journalist writing for the Chicago Tribune, with little sympathy for Judy Mikovits, and with this title, the original given by the link in the title

Manipulation alleged in paper linking virus, chronic fatigue syndrome

Here are the first four paragraphs, under a photography of dr. Mikovits, smiling at the camera in 2009, dressed in a white lab coat:

The journal that published a high-profile paper linking chronic fatigue syndrome to a retrovirus is now investigating alle- gations that a figure in that report was manipulated.

The appearance in Science of the 2009 paper caused an immediate sensation among patients who have yearned for an explanation for their condition. Its authors said they had found evidence of a retrovirus called XMRV in the blood of people with chronic fatigue syndrome more frequently than in the blood of their healthy peers.

The report included a figure purporting to depict lab test results from seven blood samples, including two from chronic fatigue syndrome patients whose blood appears to show evidence of XMRV and five from healthy people whose blood does not.

But the leader of the team that authored the 2009 paper, researcher Judy Mikovits, apparently presented the same figure -- carrying different labels and supporting a different point -- in a talk given at a conference on Sept. 23 in Ot-tawa.

And here we have arrived at the second source, in that the last paragraph was found by a virology-student (for the Ph.D.) who calls herself 'Erv', who has a blog, from which she has been attacking dr. Mikovits and the WPI ever since the publication of the 2009 Science paper, and possibly before.

The last I don't know about, and it seems that 'Erv' (or maybe someone who backs her) has some long-standing feud with dr. Mikovits, in view of the language 'Erv' has recourse to, such as "a gigantic fucking cunt", for dr. Mikovits. (Is this a frustrated lesbian ex-lover, perhaps? I mean: it's pretty emotional language, from a Ph.D. student, also, about a considerably senior colleague.)

Then again, facts are facts and what 'Erv' seems to have uncovered is that a talk of dr. Mikovits last September, and possibly also the Science article, present the same picture in two - possibly even three - totally different roles, with totally different consequences.

There are pictures of these pictures at various places on the internet, and indeed to me they seem to be copies - but then again I do not know who produced the pictures of these pictures, nor do I know the science to understand what they are supposed to prove or support.

Supposing the pictures of these pictures are the pictures of the original pictures (I said it was MEssy in the title!), then indeed dr. Mikovits produced the same slide in evidence of two (maybe three) completely different points that - it seems - that same slide can't support all.

This then either happened by accident or by design. As far as I can see - not very far, but I know about lecturing and slides, if indeed I also do not know much about retrovirology and the precise import of related pictures - it may have been an accident.

Then again, some might say dr. Mikovits has been hit by quite a few of accidents that should not have happened - and "some" includes Cort Johnson, who owns Phoenix Rising and has followed the XMRV-story in considerable detail ever since it broke, and who also personally met many of the participants. Here he is on Phoenix Rising, with the link to the original in the name:

Cort Johnson (Oct 3, 2011): I can't imagine this is all about the cell lines. I believe this was the tip of the iceberg - the straw that broke the camels back - Dr. Mikovits has made a long series of mistakes....I have heard that she refused to share data in the team, she was apparently the one that refused to have Dr. Peterson's name on the original paper, her many statements that had no backing behind them, her aspersions against other researchers - all of this must have added up. In my opinion Dr. Mikovits torpedoed the WPI and damaged its credibility probably irrevocably.

In one of the science articles she talked about what sounded like 100's of healthy controls that had tested negative for XMRV - which was obviously in retrospect not true. You can go on and on - the statements that the problems were caused by storage issues, then it was freezing the samples, before that it was culturing, then it was the antibody tests.....when last I talked to her - the BWG samples had been compromised by people taking antiviral and immunomodulators......

I think the WPI had to do this to survive honestly

This seems like a fair and informed sum up, though indeed it is also fair to add that most would not be considered against dr. Mikovits if several reputable researchers had confirmed her statements in the Science article, for then it all would have been passed over as 'personal style', is my guess.

So...was the 2009 Science article:

(1) an honest mistake,
(2) was it a fraud, or
(3) is there really something to XMRV, in medicine, if not in ME/CFS?

I think it is too early to say, but here are a few relevant quotations from the many comments on 'Erv's blog - 351, when I last looked - that incidentally differ a lot in quality, in style and in scientific education of the writers, but also are nearly all anonymous, which I find a bit odd, if also human-all-too-human, at least in supposedly reputable scientists, or - to be fair - in anonymous commenters many of whom do insist they are in fact real retrovirologists or medical scientists.

But the following is mostly quite sensible and polite, and in fact - it would seem - by an anonymous virologist or two, and an also anonymous patient.

I start with the virologist, whose alias is ghholm (*), who seems to know a fair amount about ME/CFS and dr. Mikovits - and the numbers with which my quotations start are links to 'Erv's blog, where they appear with that number - and part of the following comment refers back to the issue about the pictures:

277 (ghholm, Oct 3, 11):

Holy shiznit...
(...)

But even still, I never imagined it would be that outrageous. What a total debacle! No way whatsoever for Mikovits to dig herself out of this hole.

Thanks so much, ERV, for your coverage on this! I had my students read the Science paper and follow the ensuing controversy in my Virology class last year, and have a bunch of students eagerly following the story, but I never thought it would end up here! You (and the anonymous tipster) have done a great service to the virology community for latching on to this issue and helping to bring it to light. Well done!

Then by the same writer, fair and decent enough:

278 (ghholm, Oct 3, 11):

No matter how many times we say it, (and I think that it gets lost in all the vitriol and anger), the real tragedy is still for the ME/CFS patients that got so excited about a possible cause/cure for their illness, and who got essentially suckered in by Mikovits and VIP Dx. There should be restitution for those people, who have already suffered enough. As a scientist and educator, it saddens me to see the scientific process so sullied by greed and ego, but in this day where "translational science" is all the rage, and the time from bench to clinic is so short, I forsee this happening more and more in the future

I don't know about the restitution, since it can be said the patients took a risk as adults, and could have known it might not hold up as they hoped it would. Besides, it seems probable the responsibility is spread over quite a few, most of whom acted in good faith.

Next, a sensible post by a patient, seeking scientific information:

301 (Faye, Oct 4, 11):

A patient here. I read over the blog and all the comments, but still am not sure what (beyond the idea that Mikovits clearly seems to have used the same slide in presentations purporting to be about two different studies) you're suggesting here.

Is it possible that the whole thing was purposely fabricated fro the start rather than a result of contamination? Wouldn't that be hard to do, since multiple labs were involved? How many people would have to be participating in such a fraud for it to work?

Or is it that you're suggesting that the original paper was contamination, but Mikovits was so vested that she then started making things up? Or something else that I'm not understanding? What's the worst case scenario here?

And in simple language please -- it might go a long way to making patients get through this if they knew clearly what the possibilities are.

Also briefly -- even if this was a total fraud, I hope that scientists don't give up on this disease. People are really suffering, not everyone who has it is wacko, and it's unfair to punish the patients further for having been taken advantage of.

Thanks very much for any help with explanations that folks can provide.

This was answered by one person with at least some knowledge of virology:

307. RMM Oct 3, 2011):

@Faye

I'd put my money on your second option. I guess most fraudulent scientists don't make up everything. They usually find something that is wrong, become convinced it is right but then cannot produce the additional data in support of their finding.

That is when they start to make things up - because they "know" they're right and they believe the doctored results are actually true and further research will confirm this, they are confident the fraud will not see the light of day.

I know that as an European leftie I shouldn't get all political, but I guess it's a bit like making up evidence in support of Iraq owning WMD's in order to justify an invasion. They thought they would find them anyway, in which case nobody would have questioned the incorrect evidence.

This may well be true, although it is, as yet, only a plausible guess. Finally, here is the virologist again, with what seems a good explanation in principle:

310: (ghholm, Oct 4, 2011)

Faye:

Here is a (hopefully clear) summary of the recent events in XMRV:

1) XMRV itself was found to be a laboratory artifact; a virus made when human prostate cancer cells were repeatedly inoculated into different mice. It does not exist in nature, and did not exist at all prior to the early 1990s.

2) Some of the analysis (the PCR experiments) in the original Science paper were found to be the result of contamination of some of the samples with an artificial plasmid DNA encoding XMRV. The source of the contamination is not clear, but given the circumstances and the extreme care that the Silverman group went through to reduce contamination, it is likely that the contamination originated at WPI. Why this contamination was only found in "patient" samples and not in normal controls is unknown, but highly suspicious.

3) Multiple other groups, including the Blood Working Group, have found no evidence of XMRV in any of the samples. Even the groups trying to link XMRV to CFS can't get a positive signal if they are blinded to the origin of the samples (that is, they don't know which sample is which).

4) Now, it seems as though some of the other data in the Science paper is fraudulent. The immunoblot that was shown in Fig. 2C is actually an image of a completely different experiment, one that artificially manipulated the samples in a way that would induce expression of endogenous retroviral proteins.

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 seems fair and balanced, but the writer has more relevant knowledge than I have, and it may also be that dr. Mikovits has plausible rebuttals. Then again, Mrs. Annette Whittemore seems to have given up on that possibility, which is one reason for me to reproduce the above.

As my title says, on the moment it is quite a MEss - but then again most of this will pass, without anyone being much the worse for it, except perhaps Mikovits, the WPI and some of the more fanatic patients mostly at MECFS-F. For the rest of the world it is an obscure squabble about something hardly relevant to them.

(*) Correction on Oct 5, 2011: It seems that gmholm is not an alias but is the real name of a(n assisant) professor of biology, which I only found out at Oct 5. (But I like it real scientists use their real names.)

 


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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