October 5, 2012

me+ME: New ICC primer for doctors| XMRV controversy| M.E. and my eyes


1.  New: M.E. International Consensus Primer for Medical Practioners

2.  The death of XMRV
3. M.E. and my eyes

PHILOSOPHY: But what's your job? There's no harm in asking that.
LUCIAN: I'm an anti-cheatist, an anti-quackist, an anti-liarist, and an anti-inflated-egoist. I'm anti all the revolting types like that - and there are plenty of them, as you know.
PHILOSOPHY [smiling]: Well, well! You're quite an anti-body, aren't you?
LUCIAN: I certainly am. You can see why I've got myself aso much disliked, and why I'm in such a dangerous situation. Not that I'm not an expert pro-body too. I'm a pro-truthist, a pro-beautician, a pro-sinceritist, and a pro-everything that's pro-worthy. But I don't find much scope for exercisting my talents in that direction, whereas thousands of people are always queuing up for the anti-treatment. In fact I'm so out of practice as a probody, that I dare say I have lost the knack of it by now - but I'm a real expert at the other part of my profession.
PHILOSOPHY [seriously]: That's bad. They're opposite sides of a coin, as it were. So don't specialize in one at the expense of the other. They should merely be different aspects of the same fundamental attitude.
LUCIAN: Well, you know best, Philosophy. But I'm so constituted that I can't help hating bad types and liking good ones.
(From: Lucian Fishing for phonies, in de Turner-vertaling, p. 177-8)


I leave the above quotation standing for the moment, since I like it a lot, and it also describes me - or an aspect of me. (See my Spiegeloog-column, for one example.)

Today there is good news on two fronts: There is a new booklet (pdf format) from the people who made the ICC (section 1), and my eyes seem to be improving some with a new procedure I found for administering Duratears (section 3), while there also was a fair review about the XMRV controversy (section 2).


1.  New: M.E. International Consensus Primer for Medical Practioners
There now is from the Canadian group that made the International Consensensus Criterions folks what looks like an excellent and timely follow up:

ICC Primer 2012.pdf - 2012 Oct 3 - Myalgic Encephalomyelitis International Consensus Primer for Medical Practitioners

I only give the link I downloaded it from, and will later add it to M.E.-Resources.

After a first look it looks quite good:

Not too long, quite clear lists and instructions; useful and clear; and a good reply in principle to psychiatric diagnoses, for now one can say, as a patient with (suspected M.E.) to a GP and such:
"Well look... here is a booklet compiled by a large set of medical doctors with over 500 years, collectively, of studying and treating people with M.E. If you compare this with psychiatric diagnoses, this is real science and real medicine.

Your duty is primum non nocere, and using real medical science.

I strongly suggest you use this, rather than psychiatry."

This group - 24 medical doctors all, I think, and Ms Van de Sande, who is a patient and educator, have done very well for over 10 years now, and deserve a lot of thanks: This is real medical science and is really heplful.  Thank you very much! 

It also should be quite useful to lawyers for patients with MME/CFS, especially such patients as have or have to meet with medical doctors who want to attribute a psychiatric diagnosis to them and try to force them to do follow Cognitive Behavioral Therapy and/or to do physical exercises: That is either culpable medical ignorance or willful abuse.

Also, in my opinion such doctors who nevertheless insist following the psychiatric way should be made to sign a legally binding contract that makes them financially responsible for the consequences of their treatments.

2.  XMRV controversy laid to rest
A correspondent sent me an article by David Holmes: "XMRV controversy laid to rest". This seems fair and balanced, so here it is, with my comments in between, in orange:

XMRV controversy laid to rest
David Holmes

Apart from the scandal of the now thoroughly debunked link between the
measels, mumps, and rubella (MMR) vaccine and autism, it is hard to
recall a bigger scientific controversy in recent years than that
surrounding an exotic retrovirus known as xenotropic murine leukaemia
virus-related virus (XMRV). After its initial identification and
implication in prostate cancer was reported in PLoS Pathogens in 2006,
another study in Science in 2009 linked the virus with chronic fatigue
syndrome (CFS; also known as myalgic encephalitis [ME/CFS]), and the
drama began to unfold in earnest. A solitary 2010 PNAS study apart,
the results could not be replicated, both the Science and PNAS papers
were retracted, and the brief incarceration of the primary
investigator of the 2009 study, Judy Mikowitz, lent an almost operatic
pitch to proceedings. Now, the retraction of the PLoS Pathogens paper
and publication of a definitive failure to replicate Mikowitz's
initial findings seems to have dealt the XMRV-ME/CFS hypothesis a
final, fatal blow.

Yes, I think that is true. There is no funding in XMRV, not since the Blood Work Group's Report, confirmed by Lipkin et al. Anybody who thinks otherwise doesn't know how science is done in practice.

Led by W Ian Lipkin from the Mailman School of Public Health at
Columbia University (New York, NY, USA), the study reported last week
in MBio found no evidence of XMRV or a similar retrovirus identified
by the authors of the PNAS paper known as pMLV (polytropic murine
lukaemia virus) in the blood of 147 patients with ME/CFS and 146
healthy controls. But perhaps as important as the result was the
manner in which the authors arrived at their conclusion. Unlike
earlier failures to replicate the results of the Science study, the
failure of Lipkin and colleagues' study to confirm the findings could
not be attributed to inappropriate selection of patients or sample
collection, or insensitive assays, because Lipkin's study was designed
and executed with the full participation of the authors of the Science
and PNAS papers. 'They were invested in the study from the outset and
committed to supporting publication of the results', Lipkin told TLID.
Yes, I think Lipkin did it very well, and is probably both a diplomatic and smart guy.

The multicentre study enrolled patients and controls matched for age,
sex, and geographical location from six distinct catchment regions in
the USA. Patients with ME/CFS had disease that suggested a viral
onset, the criteria governing eligibility were the same as for the
original studies, and the study was powered to detect even smaller
associations between infection with XMRV or pMLV and disease than
those reported in the initial studies. Importantly, investigators from
the Science (Mikowitz) and PNAS (Harvey Alter, of the National
Institutes of Health in Bethesda, MA, USA) studies, along with the US
Centre for Disease Control and Prevention's William Switzer, who
published one of the many negative studies, 'had free rein to do
whatever assays they wished on whatever samples they requested',
Lipkin explains. 'This is a true replication study', Mikowitz told
TLID. 'None of the [previous] negative studies were true replication
studies. Doing this was critical to answer the question of whether
XMRV was associated with ME/CFS.'
No, the last statement by Judy Mikovits Ph.D. is not quite true. What convinced me, in late September / early October 2011, were (1) ERV's site (2) the BWG result. Together these were probabilistically convincing i.e. gave the thesis that it all had been due to either contamination or fraud a far higher probability that its denial.

I was in favor of the
Lipkin et al. study because it had a good design that would be able to settle things, and I hoped he might find some alternative explanation, and because I also found it a very good idea - long overdue - to get a medical database of warranted ME/CFS patients for research.

He delivered, but found nothing I heard of, which no doubt is not his fault.

That question has now been answered with a definitive no, says Lipkin,
and in a press conference called to coincide with the publication of
the results, all the investigators publicly stated that this study
closes the book on a link between XMRV infection and ME/CFS.
Quite so.
For Mikowitz in particular, it is a chance to put the difficulties of the
past few years behind her.
Well... my personal probability - since learning about 5AZA last year - is that she and Ruscetti are frauds.

This I can't prove except on balance of evidence, but if she were a real honest scientist (1) she would not have mailed so much with patients and (2) she would not have tried to tie XMRV to most anything and (3) she would have done quite a few things differently than in fact she did.

Effectively, she did not behave as a real honest scientist would, but as someone involved in PR would.

Also, she and the Ruscettis took out patents that - so far as I know - would have been hugely profitable also if based on a false theory: Researchers would have to pay them to use their methods to research XMRV. After all, that is the point of registering a patent.

Her participation in Lipkin's study was
jeopardised briefly late last year when she was dismissed from her job
as research director at the Whittemore Peterson Institute for
Neuro-Immune Disease (Reno, NV, USA) after a disagreement over control
of laboratory samples, and was subsequently arrested after the
institute alleged that she had stolen crucial notebooks from her
former laboratory. The charges were later dropped.
It's very unlikely any patient will ever know the real truth about it. On balance of evidence, she wanted the lab books to remove incriminating stuff.
'It was personally
challenging for Dr Mikovitz and administratively challenging for us',
says Lipkin, who also led the 2008 study that comprehensively refuted
the link between MMR and autism. Nonetheless, he continues, 'the
project was only briefly delayed and there was no adverse impact on
the study design'. For her part, Mikovitz insists she has taken 'many
more positives then negatives out of the past few years', and says
that the chance to participate in the study that conclusively refuted
her original results 'confirmed for me what I had been taught that
science is self correcting. If we honour the process and participate
in appropriately powered studies with all the controls possible within
the technology, science will ultimately yield the correct answer.'
Well... yes... but....given what I was  told about the court case of the Whittemores against her - involving a claim of millions of dollars - she has a very strong personal financial interest in saying this.
However, the cause of the false positive results in the Science, PNAS,
and PLoS Pathogens papers remains a mystery.
Not for ERV and some others like gholmes, a virologist: As far as I can see these people, who have a lot of relevant knowledge I do not have, it was done with 5AZA and it was done on purpose, as it was on purpose not mentioned when handing in the paper in 2009 to Science. Had it been mentioned, Science would not have published it. And this also seems what the editors of Science came to believe, and why they retracted the paper themselves, late in 2011. (See also my me+ME: More on St. Judy and my me+ME: Sorting through some evidence about dr. Mikovits , both from December 2011. 

I think that is tge most likely explanation, as it is very likely this is what the Science editors, Racaniello and Coffin (both originally believers in the correlation of XMRV with ME/CFS), think now - but cannot explicitly say, it seems, for fear of legal consequences.

Accidental contamination
with XMRV, which may itself be a laboratory artifact generated by the
recombination of two mouse proviruses, has been touted as a possible
factor. But Mikovitz insists that 'we found positive results without
any evidence of contamination of any kind'.
I am sorry: That is far more probably a lie than an honest statement. (And is she perhaps the horrific troll or insane V99?! Who has infinite supplies of energy and always touts her position while posing as "a patient"? There is really a screw or too loose in these folks: me+ME: Eye problems + Gerwyn's Geroupies - it's all so clearly a case of Cognitive Dissonance, if indeed it is not intentional trolling.)
As for the possible causes
of ME/CFS, they remain as elusive as ever.
True, except that in cases like me and my ex it is not "psychosomatic", and quite rationally so: I never had any interest in being ill, nor did I ever have anything to gain by it, when my ex and I fell ill, and it falls within the EBV start and course that was found for many with ME/CFS before the shrinks poisoned everything, including chances for funding for real scientific research into ME/CFS.

The only reasons I did not get far more trouble than I had already with the Amsterdam dole are (1) my site since 1996 (2) my satirical and writing capacities and (3) the fact that I am a psychologist, indeed with the best possible degree, so I certainly could have made much more money than I got by way of the miserable dole had I been healthy.

What is needed now, says
Lipkin, 'is a comprehensive, interdisciplinary research programme that
investigates the syndrome with fresh ideas'.
True. And he did set up a medical database for it, which is some progress.
And Mikowitz is convinced
that against the odds, the controversy might eventually prove to have
a silver lining. 'It has already brought more people and resources to
the study of ME/CFS', she says.
False and twisted.

It did for a while, when there was a chance XMRV was involved somehow. Since that was disproved, what it caused was a smaller probability to get funding real scientific research into ME/CFS.

Also, the XMRV fiasco constituted a huge opportunity cost: The money, time and research spent on it might have been spend so much better.

As for now and the immediate future - 5, 10 years - it will probably dampen any real scientist's urge to research ME/CFS.

The only thing Mikovits can fairly claim is that the term "ME/CFS" is much better known than it was, also with journalists - but then it is now known mostly negatively.

Finally, the way St. Judy is now choosing position supports my belief she is a fraud, and was so, either from the very start, or soon after it, namely when she sidelined dr. Peterson to get published in Science, and succeeded in getting published with the 5AZA.

Dr. Peterson seems one of the minority of medical doctors who were not concerned with ME/CFS to make money, as I think most are. And indeed I don't mind they do, if they do it honestly, and on the basis of real science, but I do mind if it is based on fraud, pretense, posturing or - as seems most often the case, also with many, but not all, of the medical doctors my ex and I saw - on pretended knowledge and understanding.

Most doctors I have met just don't have any adequate idea of what ME/CFS really involves for someone having it, as regards their lives and chances - for which reason the above mentioned new ICC document is real progress.
3. My eyes and my M.E.
This is mostly as the last time: There seems to be some slow progress for me, which - I can assure you - is quite a relief.

Since the probability is that it is due to the Duratears I put in my eyes, and since this is quite difficult to do well by oneself, here is the procedure I have found to be best, and better than flat on one's back or sitting:

Procedure: I stand with my face to a wall, leaning on my elbows above my head against it, bow my head backwards, and then use the bottle to put a drop in the sack I make by pulling under the lower eyelid with a finger.
The last part is also in the documentation that comes with the droplets, but the rest isn't.


Maarten Maartensz

P.S. My eye problems

                  PS: Any necessary corrections have to be made later.