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Nederlog

September 18, 2012

XMRV is dead | Tuller in NYT | What is the yield?



Introduction:

This is a copy from the orginal to NOTEBOOK. I insert the copy here for ease of reference - the idea being that Nederlog 1012 continues after August with NOTEBOOK, which is easier to maintain for me, because of the problems with my eyes that started in May 2012.



Sections

1. XMRV is dead
2. David Tuller's article in the NYT
3. What is the yield?

     P.S.

Reformatted Sep 19, 2012: Yes, I DO have problems with my eyes...but doing a little better than before I reformatted this file and the opening pages. Also, I made a few small corrections in this flle.

And there is a new note at the end explaining why part of my site looks pretty awful, for which I am sorry: It's not done on purpose, and it is also not easy to see.


1. XMRV is dead

As I surmised and argued, most completely nearly a year ago, which was exactly two years ago after having read the news XMRV is dead. 

There was a press conference today, and Dr. Ian Lipkin gave it the coup de grace, indeed with the consent of dr. Judy Mikovits, who started it all.

The brief summary comes to this:

- There is no relation between XMRV and ME/CFS
- The spurious cause in the 2009 Science paper by Lombardi, Mikovits et al. was lab-contamination
- Judy Mikovits Ph.D. agrees:

Quote from Judy Mikovits Ph.D.:

"Statement from Dr. Mikovits, the author of the Science paper wherein XMRV was first linked to CFS: "I greatly appreciated the opportunity to fully participate in this unprecedented study. Unprecedented because of the level of collaboration, the integrity of the investigators, and the commitment of the NIH to provide its considerable resources to the CFS community for this important study. Although I am disappointed that we found no association of XMRV/pMLV to CFS, the silver lining is that our 2009 Science report resulted in global awareness of this crippling disease and has sparked new interest in CFS research. I am dedicated to continuing to work with leaders in the field of pathogen discovery in the effort to determine the etiologic agent for CFS."
 Quote from professor Ian Lipkin Ph.D.:
"Although the once promising XMRV and pMLV hypotheses have been excluded, the consequences of the early reports linking these viruses to disease are that new resources and investigators have been recruited to address the challenge of the CFS/ME", said W. Ian Lipkin, MD, director of the multi-site study and John Snow Professor of Epidemiology in the Mailman School of Public Health of Columbia University. "We are confident that these investments will yield insights into the causes, prevention and treatment of CFS/ME."

2. David Tuller's article in the NYT

What can I add to that? I add David  Tuller's article in Tne New York Times of today, as usual with him clear and to the point, except for the title, that I guess is not his:
"
Chronic Fatigue Syndrome Back to Square 1

Chronic fatigue syndrome is not caused by a mouse retrovirus, according to a study initiated by the National Institutes of Health to settle what had become a contentious scientific question.

The long-awaited results, posted online Tuesday in the journal mBio, found no link between the illness, also called myalgic encephalomyelitis, and mouse leukemia retroviruses, including one called XMRV. Two earlier studies had identified higher levels of the viruses in patients with chronic fatigue syndrome. Later research did not confirm the finding, and scientists blamed laboratory contamination for the earlier results.

The N.I.H. asked Dr. Ian Lipkin, a virologist at Columbia, to investigate. Dr. Lipkin recruited in the effort scientists who initially reported the link to mouse retroviruses, and they serve as authors on the mBio paper.

In the study, none of the researchers reported finding mouse leukemia viruses in any of 293 blood samples, half from people with chronic fatigue syndrome and half from those without it.

An estimated one million people in the United States have the condition; many are severely disabled and homebound.

Dr. Lipkin said that he viewed chronic fatigue syndrome as a major illness and intended to use blood samples he had obtained to investigate the causes.

A version of this article appeared in print on 09/18/2012, on page D6 of the NewYork edition with the headline: Vital Signs | Risks: Chronic Fatigue Syndrome Back to Square 1.
"
3. What is the yield?

I'd say this:
  1. As to the media:

    ME/CFS got a considerable amount of media exposure mostly due to the Science article in 2009
  2. Appraisak of the media exposure

    It is difficult to say what good that did: It put ME/CFS on the map in the media, but after the repeated failures to conifrm the link and the repeated - let's say - not very rational or polite reactions of quite a few patients what might have been positive soon turned sour

    Maybe on balance it is positive - on the somewhat cynical view that to get media exposture is better to be known somehow than to have been never heard of

  3. As to the science:

    First, scientifically speaking this is definite progress: Science proceeds by conjectures and refutations, as Sir Karl Raimund  Popper - one of the few philosophers (of science) to get knighted because of philosophy - never got tired insisting. Besides:

  4. Second, Dr. Lipkin succeeded in putting together a database with- I think several hundreds of files with - medical data of  patients with ME/CFS, which is bound to be very useful for scientific research (while it is odd nobody did this before, in the last thirty years, as M.E. aka Myalgic Encephalomyelitis has been a disease recognized by the World Health Organization since some 40 uears now, and notably not at the U.S. CDC, that wasted tens of millions of dollars in furthering the late Bill Reeves antics and defamations and denigrations of patient with ME/CFS, without doing anything useful that would have contributed to real science or would have been of help to the patients with M.E. ("First do harm", seems to have been Bill Reeves basic principle of medical ethics)

  5. As to the patients:

    Many patients initially were elated that what they naively and mistakenly assumed to be a scientific causal explanation for ME/CFS had been found by Lombardi, Mikovits et al. In fact, all that was in fact found also if it had not been contamination (as Judy Mikovits Ph.F. now agrees is the real cause of the findings she got published and defended for nearly 3 years) was a correlation (as indeed I myself insisted since October 2009).

    Quiite a few patients defended, argued and mailed the media and researchers with scientifically unsound ideas that the cause had been found, and behaved quiite unreasonably - that may be explained by their  having been discriminated for years or decades as mad or as malingerers by such worthies as the malicious Bill Reeves Ph.D. of the U.S. CDC, and by psychiatrists such as Simon Wessely and Michael Sharpe, who claim - totally illogically, dishonestly and immorally - that psychiatry can explain unexplained medical diseases, namely as follows: If current medical science has no complete explanation for a disease - multiple sclerosis or peptic ulcers come to mind, about which psychiatrists have argued likewise, thereby contributing enormous amounts of suffering and discrimation to millions of genuinely ill honest people - then .... there is  no disease and those who claim to be ill must be mad or malingering and therefore should start paying a ... psychiatrist to get cured from their delusions that they are physically ill by (forced) physical exercises and cognitive behavioral therapy to teach them to think and behave properly, as psychiatry defines that.

    And while this line of argument - there are estimated to be 17 million people with M.E./CFS in the world - is of very great benefit to psychiatric incomes AND totally in contradiction with the World Health Organization's classification of M.E./C.F.S. all psychiatrists and clinical psychologists I have read who perpetrate this cruel scam decline to discuss their own financial interest in this pseudoscientific medical fraudulence and also succeed in never as much as
    mentioning the following two facts - and I quote (from Sophia and me, an impressive site about the life and death of Sophia Mirza, a patient with M.E. who was severally and cruelly abused by British psychiatists and medical doctors):

    "WORLD HEALTH ORGANISATION (W.H.O.) DEFINITION OF M.E.

    ME/CFS is an acquired organic, pathophysiological, multi-systemic illness that occurs in both sporadic and epidemic forms. Myalgic Encephalomyelitis (ICD 10 G93.3), which includes CFS, is classified as a neurological disease in the World Health Organization's International Classification of Diseases (ICD). Chronic fatigue must not be confused with ME/CFS because the "fatigue" of ME/CFS represents pathophysiological exhaustion and is only one of many symptoms. Compelling research evidence of physiological and biochemical abnormalities identifies ME/CFS as a distinct, biological clinical disorder.".

    What these same psychiatric pseudoscientist and frauds never mention to the governments and institutions they do - falsely and dishonestly - advice about M.E. is this fact:
  6. Clarification by the World Health Organization

    Dr. B. Saraceno of the WHO had clarified the classification in writing on October 16, 2001.


    “I wish to clarify the situation regarding the classification of neurasthenia, fatigue syndrome, post-viral fatigue syndrome and benign myalgic encephalomyelitis. Let me state clearly that the World Health Organisation (WHO) has not changed its position on these disorders since the publication of the International Classification of Diseases, 10th Edition in 1992 and version of it during later years.”


    “Post-viral fatigue syndrome remains under the diseases of nervous system as G93.3. Benign myalgic encephalomyelitis is included within this category.”

    “Neurasthenia remains under mental and behavioural disorders as F48.0 and fatigue syndrome (note: not THE CHRONIC FATIGUE SYNDROME) is included in this category. However, post-viral fatigue syndrome is explicitly excluded from F48.0.”


    Further Clarification


    Andre l’Hours of the WHO headquarters provided further written clarification on January 23, 2004.


    “This is to confirm that according to the taxonomic principles governing the Tenth Revision of the World Health Organization’s International Statistical Classification of Diseases and Related Health Problems (ICD-10), it is not permitted for the same condition to be classified to more than one rubric as this would mean that the individual categories and subcategories were no longer mutually exclusive.”


    Mr. L’Hours stated that any country that accepts the WHO Regulations for nomenclature is obligated to accept the ICD classification.

  7. For more on M.E., the abuse of patients and the scientifically established facts about M.E. see:

    - See also The Hummingbird Foundation for M.E.'s  ME The Medical Facts: Summary and these items on my site:

1. Anthony Komarof

Ten discoveries about the biology of CFS(pdf)

2. Malcolm Hooper THE MENTAL HEALTH MOVEMENT:  
PERSECUTION OF PATIENTS?
3. Hillary Johnson

The Why  (currently not available)

4. Consensus (many M.D.s) Canadian Consensus Government Report on ME (pdf - version 2003)
5. Consensus (many M.D.s) Canadian Consensus Government Report on ME (pdf - version 2011)
6. Eleanor Stein

Clinical Guidelines for Psychiatrists (pdf)

7. William Clifford The Ethics of Belief
8. Malcolm Hooper Magical Medicine (pdf)
9.
Maarten Maartensz
Resources about ME/CFS
(more resources, by many)



Note of September 19, 2012 about the appearance of the site

The problems with my eyes have now been ongoing for me since the middle of May of 2012. Lately, there is some relief thanks to Duratears, but it is by no means over. Meanwhile, I have been trying to keep my site updated, which is far from easy anyway.

The site's appearance at various places got slowly worse because of a combination of factors

(1) I am on Linux Ubuntu, that I much prefer over MS Windows, for many reasons, but that has some shortcomings, such as no really good WYSIWYG html-editor. This also is the case for MS Windows (if you can't afford to pay lots of money, which holds for me), and I have used various editors until I was presented with a legal copy of MS Frontpage in 2002, that I mostly used for the site till 2011. This was less bad than the rest, but not really good. Also, that runs only on the 32 bits machine I have, that is itself flaky and quite slow, especially with Frontpage.
(2) The best I could find on Ubuntu for the site that I have - thousands of html files put together mostly since 1996, when my site started, comprising at the moment 395 MB is a combination of KompoZer and of SeaMonkey's editor Composer, from which the former was derived. Unfortunately, KompoZer is seriously bugged in various ways. One can write a decent bit of html in it, but when it comes to maintaining a site like mine, its bugs get easily in the way. SeaMonkey does not have most of the bugs of KompoZer, but is more limited in its capacities.
(3) Having problems with my eyes, and doing most of my reading of texts on a computer through a browser, preferably either Firefox or Seamonkey, since I very much dislke MS I.E., and anyway am limited to Ubuntu for most things, I tweaked the browsers I use to avoid problems with my eyes. Notably, I tweaked the size of texts. Unfortunately, that depends on at least 2 parameters, apart from fonts, and these parameters are differently handled by different editors and by different browsers.
(4) The effect of different sizes of fonts again can be overridden to some extent by increasing the size of the text with the browser, which again can happen in various ways, that mostly amount to one's not seeing the original sizes...

So that's how it happened that I managed to screw up the appearance of parts of my site - especially in Nederlog, my Philosophical Dictionary, and the opening of the site, without really seeing it. Besides, what I did see I could not undo with such eyes as I had through the summer of 2012, that I spent for a good part in the dark.

Anyway... there still is rather lot to improve, and with the eyes and the health I have I can make no promises whatsoever, but at least you have an explanation.


---

Maarten Maartensz


Note of 23 nov 2012: This has been edited back from earlier versions that did not display well. I think the text is the same as was, but the table about M.E. is a better version than was in the original, though most items are the same.

                  PS: Any necessary corrections have to be made later.