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No Longer Naive in the Ways of The Beast
After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...
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Biochemical, inhibition, inhibitor resistance studies XMRV reverse transcriptase

Discussion in 'XMRV Research and Replication Studies' started by Jemal, Sep 9, 2011.

  1. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Brisbane, Aust
    Why is understanding of the disease so critical? Let's avoid the meaningless circular philosophical debates and concentrate on specifics. If researchers and clinicians don't bother to understand the disease they can't treat it. If I go into a clinic and the doctor doesn't know the difference between fatigue and PENE, I am wasting my time. It took decades for one or two researchers to grasp the difference and to begin to research PENE (as the Lights have done). Most clinicians and researchers still don't know and don't care.

    Similarly other symptoms have been either ignored or poorly researched. Eg POTS/OI or whatever you want to call it. Effects of the condition do not disappear on lying down, but persist for hours or days. Yet I have not seen this studied. It seems as poorly understood as the fatigue side of things.

    Edit: Sorry Alex, it appears (as Bob points out below) that I have reiterated a point you have already made.
  2. Marco

    Marco Old blackguard

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    Near Cognac, France
    This may well be how science is supposed to work but all the evidence suggests that adherence to the scientific method very much depends on the interests of those involved.

    The 'null hypothesis' that ME is caused by an as yet unidentified pathogen and has significant associated pathology has not been disproven beyond all doubt. In fact the balance of evidence to date suggests that the null hypothesis is valid. If science worked the way you suggest ME could not be classified by some as a psychosomatic disorder; ME patients would not be considered by some to have 'maladaptive illness beliefs' and graded exercise would not be recommended as a treatment when the extent of pathology is unknown and there is strong evidence suggesting it may cause harm.

    Of course we don't exist in this ideal world.

    The issue was the frequent warning to avoid ARVs not whether continued XMRV research is cost effective, although with regards to the latter, while the XMRV as pathogen null hypothesis remains valid, any right headed analysis could only conclude that the potential risks of not fully researching a novel human retrovirus far outweigh the costs, particularly when, as seems to be largely the case, XMRV research is not diverting funds away from existing ME/CFS research budgets.

    Which gets us back to what I and others have been saying. The numbers of ME patients taking or who may take ARVs are miniscule and the frequency and stridency of the warnings against completely out of all proportion.

    As for other viral agents; future susceptibility/transmission this is true for any member of the population yet doesn't seem to be a concern when ARVs are prescribed prophylactically - in numbers many orders of magnitude greater than the very limited numbers of ME/CFS patients.

    Is the prophylatic use of ARVs a major concern requiring repeated dire warnings?

    Methinks as regards ME/CFS that they protest too much which inevitably leads to suspicion about other motives.

    An easy way to avoid/allay such suspicions is to assume that the vast majority of patients are sensible adults and not make a major issue out of a very minor risk.
  3. Bob

    Bob

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    England, UK
    Thanks again for another helpful post Alex.
    I think that sums up much of the difficulties that our community faces really...
    For me, it distills the problems that our community faces, into one paragraph...

    I don't think enough emphasis is put on this aspect of the nature of the illness by either patients, patient organisations and researchers...
    Nearly all the emphasis is always put on 'fatigue'. I'm always hearing about fatigue and pain related issues.
    But it is the reaction to exertion (i.e. PENE) that distinguishes ME from other fatigue conditions... This is the central feature of ME that I think should always be highlighted and promoted as the core facet of ME by patient organisations.
    In some ways 'post exertional relapse' or 'post exertional reaction' might even be a better description than PENE (post exertional neuroimmune exhaustion), but at least PENE seems more helpful than PEM.
  4. Bob

    Bob

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    England, UK
    Thank you for taking the time to reply IVI.
    Much of your response makes perfect logical sense and of course you can just stick to the pure science, and not worry about how your words might affect people personally.
    But I think you are missing the central point of this forum IVI. At its heart, it is a patient forum, where scientific discussions are had. It is not fundamentally a science forum.
    There is a subtle difference, in that the science being discused directly and immediately affects people's lives in a big way.
    So I was just pointing out to you why your insensitivities to people's personal circumstances might provoke reactions, and how you might avoid such reactions.
    I can't see the difficulty of explaining your position with care and sensitivity. That would not mean a change in your opionions, or your message, but personally I just think it would be helpful on a patient forum to explain the reasons behind your opinions with more care, so that patients can understand where you are coming from, and not be offended.
    I don't always post in such a careful way either, so I shouldn't preach, but I just wanted to point out that non-scientists will not always understand your position on this forum if you don't explain it more carefully.
  5. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Classic example of why "science" isn't the perfect, "secret-God-Substitute" many want it to be:

    Castle Bravo thermonuclear weapon test.
    http://en.wikipedia.org/wiki/Castle_Bravo

    [video=youtube;kT59uo3kz98]http://www.youtube.com/watch?v=kT59uo3kz98[/video]


    the crater is 2 kilometres across
    [​IMG]

    Despite having some of the most brilliant minds of the era, they were still woefully ignorant, still woefully driven by Human urges

    this is the fallout map, if you were in the red or orange zones, you were going to die, horribly.
    Fortunately only one poor sod suffered that fate, but as you can see, the area was so vast, and did contaminate inhabited areas that, well, it was a disaster
    if that had occured in the continental United States, especially if there had been any concentraiton of metal minerals in the fireball area...yeech.

    [​IMG]

    I like science, I sometimes do not like your scientists, to paraphrase Ghandi ;)

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