May 7, 2011


me+ME: More XMRV-news


This continues XMRV-news of May 5. There is some news and there are some new entries:

For the moment I only have some quotations and a remark:

Quotation fom the Science piece linked above, that has the most relevant and varied information from the above group of four links (and more than I quote):

Mikovits says she remains confident that the 14 CFS patients she selected for Singh's group have XMRV in their bodies. "These people are infected," says Mikovits. "This study says nothing. We have complete confidence in every bit of the results in the Science paper. We don't think any of it is wrong. There is no evidence of contamination in our lab, and we have controlled for that all along."

Mikovits notes that Singh's group did not use the identical protocols for every analysis, and stresses that discrepancies between their labs may also reflect her own finding that XMRV levels vary in patients day to day. Singh counters that although some protocol differences exist, they worked closely with Mikovits' team to replicate the original work. Singh says the fact that they didn't find XMRV in any of these patients is significant. "She [Mikovits] pointed us toward patients that she had repeatedly tested positive," says Singh. "We should have found at least one that was positive. Not all of them would have gone negative on the day when a phlebotomist met with them."

Mikovits cautions that her Science report did not assert that XMRV causes CFS but only claimed to have detected XMRV in CFS patients. But the large community of CFS patients, who often find themselves confronting a medical establishment that questions the very existence of their disease, pounced on this finding, and some even started taking antiretroviral medicine to treat their supposed XMRV infections.

Singh's lab earlier reported that antiretroviral drugs do work against XMRV in test tube studies. But she now cautions CFS patients that taking them is unwarranted and even dangerous.

Confused and confusing? Here is Dr. Lipkin's mail quoted from professor Racaniello's Virology Blog:

Dear Vince-

We have a plethora of explanations for how CFS/XMRV/MLV studies could go awry. However, we donít have evidence that they have. Absent an appropriately powered study representing blinded analyses by Mikovitz and Lo/Alter of samples from well characterized subjects using their reagents, protocols and people, all we have is more confusion.

I remain agnostic. We wonít have answers until the end of 2011.

The NIH will post something on our study today.


Quite so, though it is a pity Dr. Lipkin's study takes another half year, at least.

My remark:

I have read through all the remarks made by commenters under Professor Racaniello's blog of May 4, which is an incoherent lot by many anonymous, anonymized, partially anonymous and a few non-anonymous contributors of mixed background and motives, to the sum of which Dr. Lipkin's

all we have is more confusion

fully applies, also because it is often unclear who reacts to whom - one gets a long list of points with "Anonymous" as the main contributor(s), also rarely indicating whom or what comment they react to - and in which capacity they write (as patient, virologist, scientist, passer by) and with what capacities (degrees, subjects studied).

However... one of the main contributors next to "Anonymous" is one Flex, again present on the latest Blog by professor Racaniello, as the first contributor:

  • Flex
    Hi Vince RRM, Johan and Rob. Flex here. Take note of Lipkins words. Stick to science and the scientific method and you will eventually see the difference between a scientific discovery and non objective unproven assay with multiple changed variables.
  • I am sorry, but this anonymized person without any information on its background, is someone I recall from last year on Phoenix Rising when it tried for a long time to write a letter intended for the media and could not succeed in writing anything either stylistically, grammatically or rationally decent.

    This is just a fanatic believer without any scientific qualifications whatsoever (that I know of or can or could see), who does not speak for me, is not qualified to discuss science. I don't mind that people have beliefs I don't share; I do understand the findings about XMRV by Dr. Singh and her co-workers are disappointing many patients; and I do agree patients with ME/CFS are often in great difficulties, but this Flex persona just does not have the knowledge or intelligence to speak in the name of "science and the scientific method" or lecture real scientists on it.

    As for me: Both Dr. Mikovits and Dr. Singh seem to me to be honest and qualified and on the side of patients with ME, though being human each may be mistaken in some respects,  while their subject is truly difficult. And as I put it two days ago:

    As far as I am concerned, the jury is still out, and the Lipkin study, that still is ongoing, has the best design to try to determine the role and presence of XMRV, but this study by Singh et. al. at least makes it credible that some patients who very probably do have ME/CFS do not have an infection with XMRV.

    This doesn't mean that there are not some patients who very probably do have ME/CFS who  do have an infection with XMRV, but then again there is the problem of various sub-groups and of diagnosing people, all apart from the real and genuine difficulty of establishing the presence or absence of XMRV.

    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:  
    3. Hillary Johnson

    The Why

    4. Consensus (many 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)

    Short descriptions:

    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:
       "it is wrong always, everywhere, and for anyone, to believe anything upon insufficient evidence".
    7. A space- and computer-scientist takes a look at psychology.
    8. Malcolm Hooper puts things together status 2010.

        "Ah me! alas, pain, pain ever, forever!

    No change, no pause, no hope! Yet I endure.
    I ask the Earth, have not the mountains felt?
    I ask yon Heaven, the all-beholding Sun,
    Has it not seen? The Sea, in storm or calm,
    Heaven's ever-changing Shadow, spread below,
    Have its deaf waves not heard my agony?
    Ah me! alas, pain, pain ever, forever!
         - (Shelley, "Prometheus Unbound") 

        "It was from this time that I developed my way of judging the Chinese by dividing them into two kinds: one humane and one not. "
         - (Jung Chang)


    See also: ME -Documentation and ME - Resources

    Maarten Maartensz (M.A. psy, B.A. phi)

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