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Nederlog
Dec 3, 2011               
       

me+ME: Bits and pieces relating to ME and XMRV

 
  "A wise man proportions his belief to the
   evidence."
   -- David Hume
   "Never argue with an idiot".
   -- Mark Twain


There was yesterday no Nederlog because I tried to read through ERV's blog from September 2009 till now, and indeed did so, including most of the comments.

I wouldn't recommend this to most, but then I am like that, i.e. curious to know and find out, if indeed sometimes somewhat slow - but then my excuses are that (i) I do have ME/CFS in a rather serious form and (ii) I have said from the very beginning, in October 2009, that I am not competent to judge virology and biochemistry, and lacked both the health and the interest to read up on it.

Anyway... here are some findings, and there may be more later. I sorted them in sections and got them from my reading and clicking on appropriate links:

0. General introduction
1. Our Gerwyn Has A Model Our Dr Judy We TrustTM Approved
(gasp!)
2. Our Dr Judy We TrustTM "is a nutbar" (ERV-collection)
3. Loveletter from W(h)ittemore Peterson Institute to ERV
4. Cui Bono?
5. How did it come to this?

0. General introduction

There are two epigraphs I've used before at the top, and there is this immortal piece of film that is totally apt and should be seen or reviewed by all:

Necessary Viewing (MUST read/hear/see: 1 min 22 secs)

1. Our Gerwyn Has A Model Our Dr Judy We TrustTM Approved (gasp)

There is the new forum for Guru Gerwyn And His Geroupies, that I wrote about four days ago, under the link. On condition that you become a member there (not otherwise: Real Gerwynesque Science is only for The Select Few, since otherwise the heathens might mock it), you'll be able to find there A Model Of The Disease, by Gerwyn Himself, of which He says

This is a diagram of my disease model, please do not reproduce elsewhere.

Being kind, I shall not reproduce it, but I can give a description, that must have been written by a cynic, a denialist, a doubter and a very bad sort of person:

I'd said that I would comment on Gerwyn's Abstract Art. Well... that's what it is. To start with, on a superficial count, it contains about 55 entities and 55 arrows, all multi-colored, and all clearly the fruit of many an hour with a drawing program, that may indeed look quite nice as some sort of illustration, of some thing or things. But there my problem starts, with this "disease model": 

The somethings it is an illustration of (always apart from Gerwyn's Mighty Mind And Great Knowledge) consists of about 1 of 2^110 possible Models Of The Disease ME (namely, as modelled by absence or presence of entities or arrows).

Then again, it does allow us an adequate measure of the powers of Gerwyn's mighty mind, as expressed in elementary maths:

It is just 1 of a mere 1298074214633706907132624082305024 possibilities, according to the programming language I use to calculate and express it in integers. You may be inclined to give or take a few percentages, in case you were feeling skeptical or strict, but then the above should be the exact number, that I doubt has any regular English expression for it.

So... it's possibly quite nice as Abstract Fart - A True Conversation Piece - but otherwise of no rational cognitive use. Being the most humble of men, he lets his readers know that he "
constructed it in consultation with Judy"; that - in case you might have wondered - it "is colored to make it easier to present"  and also that "I have no idea whether it is accurate the hypothesis can be tested I can only say it is original."

In case you frown upon my mathematically inspired levity, I am willing to admit, that a similar treatment could be given to many diagrams appearing in medical or would be medical books - but then I should also say these tend not to be as flagrantly in conflict with Ockham's Razor as Gerwyn's Abstract Fart, that seems to have been compiled on the following principle: Let's put in ALL the terms we know, nicely coloured and shadowed, including also that most infamous Vegus Nerve, that does Our Community Of pwMEs such untold harm, and then connect the lot with arrows, but in a nice fashion, and without too many double arrows, which would increase the model in complexity to something like 1 out of 2^165 - or (and I am again counting carefully) just a mere 46768052394588893382517914646921056628989841375232 of possibilities surveyed by Our Judy And Gerwyn (who must have refuted all of them, but one: Real Science!).

This whole approach - put in a term, nicely coloured, and connect it with a pointed arrow to another nicely coloured term: Biomedical Science at its abstract best - also has the nice possibility of seeming to comprise and cover and contain every possible model involving the terms: mitochondria, NO (nitrous oxide), methylation, glucose metabolism, peroxynitrate, autoimmunity .... in brief: nobody who in the last three decades has proposed anything vaguely biomedical about ME/CFS seems to have been left out of Gerwyn's Abstract Fart, and it all starts with (drumroll......) HGRV.

If you believe it.

Anyway, if this is the best our Ger can do, maybe he should consider becoming, with Flex as male model, the new Lucian Freud.

Having done the science, modus Gerwynicus, let's continue with the ArchFiend:

2. Our Dr Judy We TrustTM "is a nutbar" (ERV-collection)

As I said, I read through ERV's blog on XMRV and indeed some other subjects from september 2009 onwards, including most of the comments, and learned quite a bit more than I knew.

In fact, Ms. Smith may offer the sort of hypothesis that  Our Dr Judy We TrustTM's very own lawyers may also tender to the court, namely that, really and truly, she did not do it, on purpose. To quote Ms Smith on the subject, she has not as many models as Gerwyn & Dr. Judy, and can make do with two, albeit it with "a spectrum" in between:

The lead PI on the "XMRV-->CFS" paper is a woman named Judy Mikovits. She is a nutbar. Everyone is out to get her, everyone is part of conspiracies to discredit her research, she consorts with anti-vaxers and snake-oil peddlers-- aka, nutbar. One of her many claims of persecution was that she has allllllllll these papers written but no one will 'let' her publish.
(...)
If I am being generous, I would say that they did not start with the right populations of patients and grossly overstated their data because they are mind blowingly incompetent.

On the other end of the spectrum is the assumption that they know damn well what they are doing, and just wanted to publish 'something' to justify selling CFS patients another expensive-say-nothing 'diagnostic test'. They mentioned in the paper they wanted to use this 'cytokine test' to assess whether antiretrovirals are working. So they could sell this test to a CFS patient, 2, 3, 4, more times a year? If I were evil, thats how I would do it.

If you click on the relevant term "nutbar", Google should produce a nicely collected sorted set of ERV's blogs on the subject, that may convince some that  Our Dr Judy We TrustTM may really have been speaking the truth, as she saw it.

I'll return to that eventuality a little later, and first consider

3. A Loveletter From W(h)ittemore Peterson Institute to ERV

This is an interesting bit of endearing prose that seems to have been sent from the IP-address of the WPI, that somewhere got misspelled. It starts of like so:

your a pig. go to school and learn to write you asshole. plus I believe this doctor judy mikovits has a higher education than you, UVA is a very difficult school and from they way you write I can't tell if you passed the middle school SOL bullshit. You can't even spell blog. fucking idiot. It's also funny that you want to fight a lady. You are a classless piece of shit, mine as well have pulled your scummy ass out of the horse shit piles at the rodeo.

Those who want more - this was about 20% of it - including lessons on spelling "W(h)ittemore, IP-numbers, and moral views can go to

Love letter

4. Cui Bono?

Next, something I had read about, namely that Doctor Judy, and the Doctors Ruscetti (husband and wife) and indeed also Doctor Lombardi, have filed patents on what they did.

Very few in Our Patient Community seem to have been interested in them, though they will or would make eventual medicines - effective or not: caveat emptor, as always - a lot more expensive and profitable, especially to the holders of the patents.

Since I am myself old, cynical, ill since over thirty years, and not very favorably impressed with much of mankind, I wanted to know, since I think that asking "Cui Bono?" often clarifies a lot, as regards politicians, mafiosi, priests, psychiatrists and indeed scientists, and two days of reading told me what I wanted to know, in outline, on a site appropriately called Free Patents On Line:

The doctors Mikovits, Lombardi and Ruscettis patents

So... Cui bono? That is: Who benefits? Well, clearly these four biomedical scientists, who all mean so very well, to start with.

It still does not prove fraud, of course, but it does prove motive for fraud, and a motive for these people's strong personal interest in their story being believed by patients, employers and colleagues. (*)

Incidentally, the file linked is a fair amount of quite technical text - 174 Kb in small letters in html and I have not read all but some - that seems, with today's knowledge, palpably false, and all seems to promise lots of wealth if these patents are awarded to them and if medicines (effective or not) are based on them, or perhaps even if just their methods were used by others.

Having provided a motive, let's end with a question:

5. How did it come to this?

Actually, there is a piece in the most recent Slate,  and namely by "Julie Rehmeyer" who "is an award-winning math and science writer who writes mathematics columns for Wired and Science News" that addresses just this very question (Ms Rehmeyer's title):

      How did the study of chronic fatigue syndrome come to this?

Ms. Rehmeyer, who wrote an interesting informed article, says among other things, including "(Disclosure: I myself have CFS.)" that

For now, itís unclear whether Mikovits is a fraud; an overambitious, careless, and irresponsible scientist; or just a researcher who temporarily lost all perspective. But itís easy to imagine how her sense of obligation to produce results quickly for desperate patients, and the polarized atmosphere around CFS research, could have greased the slide she and the institute took from cautious science into reckless overreaching.

The failings of Mikovits, Whittemore, or the patients who trusted them arenít the point, though. With a disease this debilitating and marginalized, some patients are bound to make leaps of faith; some researchers might start to believe their own press; and a mother may overextend herself in her quest to save her child. But the alienation of the patient community only arose because of the mishandling of CFS by the public agencies. The best way to avoid this kind of fiasco would be for researchers and public health officials to follow their obligation to protect public health, be faithful to the science from the beginning, and fund and pursue the many promising avenues for research on CFS that have recently emerged.

Finally, while I agree that Ms. Rehmeijer gives a fair, balanced and informed view, I should add that, speaking for myself, I incline to fraud rather than madness. I don't have proof, but I do have a proof of evidence for motive given above, and I also have a probabilistic argument:

The reasons I think a series of mistakes based on incompetence is less likely as an explanation, is that, mostly from reading the 30 issues on ERVs blog on the subject of XMRV, scientific methodology, and the morals of scientists, that Our Dear Judy has been criticized a lot by her very own colleagues, and since the beginning, and if Our Judy were honest and fair and concerned with patients' welfare and chances, and indeed also sane, she should and would have handled much of it quite differently, whereas if she were not honest nor fair nor concerned about patients interests, she would have done as she seems to have been doing for two years: bluffing it. Besides, many people want to get rich.

What most patients - at least - simply miss is that this very chance of getting very rich as a scientific researcher makes (retro-)virology, like medicine, rather different from mathematics, physics, or indeed psychology: In either of these, one's financial reward as a scientist is tenure at a university, and the status that goes with that, and little else, normally. (Physicists may invent patentable stuff, but getting a patent tends to take a lot of time and money, for what often is a gamble, namely that a financier will arise, finance the realizing of the good idea, and make a huge profit, one can share in as patent owner. With stuff that directly touches people's health, it's a bit different than having invented a better ballpoint or toaster.)

This - the huge patents and expensive medicines big pharma sells - make medicine and retrovirology really different from other sciences.

And it should make patients at least a little wary of scientists with patents who are so incredibly and miraculously Good and Moral and Helpful and Kind, that it defies belief, of the somewhat informed about science, human beings or human motives.

 

(*) There is a rather demented group of wishfully thinking patients who at this point love to scream at me and others, in caps, preferably, that "NO ONE IS GUILTY BEFORE BEING DECLARED GUILTY BY A COURT!!!". Sure: Hitler, Stalin, Mao, and Khaddafi all are perfectly innocent. (In brief, such bright people confuse a legal principle for a moral principle: Of course people are guilty before they are judged to be guilty, if they are judged guilty, and indeed are guilty, for else they could not be truly judged to be guilty. Why o why is logic so difficult for some?!)

 


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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