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Biochemical, inhibition, inhibitor resistance studies XMRV reverse transcriptase

RustyJ

Contaminated Cell Line 'RustyJ'
Messages
1,200
Location
Mackay, 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.
 

Marco

Grrrrrrr!
Messages
2,386
Location
Near Cognac, France
One, because science is structured such that even where a high probability is suggested (in this case XMRV is not a pathogen), until the null hypothesis (in this case XMRV is a pathogen) is demonstrated to be false, scientists to accept the null hypothesis as having a degree of validity. There is a fundamental difference between saying "research on XMRV as a pathogen at this time is not an effective use of resources" and saying "XMRV is not now and never could be a pathogen". And two, because there is no way of knowing what other viral agency may be currently affecting someone with an illness of unknown aetiology, nor of what future susceptibility that individual may have, nor of what communicability any resistant organsm may have.

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.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
A discussion with patients will have quickly revealed that we do not respond well to activity (mental or physical) that is beyond our threshold. Our health crashes. Tens of thousands of doctors would have heard this story. Hundreds of researchers would have heard this story. So far as I know the first scientific study that used this patient claim, that tested it by looking at post exercise results, was in 2003, followed by 2006. Why did it take 19 (71?) years? If I were to go out there and ask doctors today what happens to patients after exercise, how many could describe it? One percent?

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.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
What has that go to do with a discussion of a scientific paper ? Either the science is being discussed or it is not - there are no sensitivities involved that's the whole point of the scientific approach, of course on forums or sub forums where the purpose is discussion of personal suffering or difficulties or whatever, civility would require acknowledgement of the pain being expressed. But suffering of itself doesn't confer expressable scientific insight, and an expression of misery does not confer scientific authority. Those who want to be 'supportive', 'kind', 'sensitive', 'empathic' and 'thoughtful' have plenty of opportunity to demonstrate those qualities in other arenas without clogging up reasoned analysis with appeals to emotion.

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.
 

SilverbladeTE

Senior Member
Messages
3,043
Location
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
Castle_bravo_crater.jpg


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.

Bravo-Fallout.jpg


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