Dec 27, 2011
me+ME: Lo/Alter paper retracted by authors
1. Lo/Alter paper retracted
It doesn't rain or it pours, in some conditions: The Lo/Alter paper that found MLVs now has been retracted as well. The most informed comment is here, by professor Racaniello on his Virology blog, that I linked to yesterday:
Today, you find under it another incarnation of V99, that calls itself now Hone-5kl, and is as demented, ignorant and prejudiced as ever.
There also is a clear and short article by David Tuller on it, in the New York Times:
Here is a quote from it, that seems fair and sensible to me:
There also is an article by CAA "President & CEO" K. Kimberley McCleary - "has served as the Association’s chief staff executive since 1991" - on Research1st:
From this I quote another quotation of the authors of the retraction:
There are more links to other reactions in the article, and Ms McCleary herself says:
This seems to me to be a correct appraisal of the situation, that indeed may err a little on the positive side, for if the Lipkin study does provide credible positive evidence that, after all, there is a retrovirus involved in some people with a diagnosis of ME/CFS - which I myself believe to be quite unlikely, but which is a logical possibility - the whole situation as regards funding becomes very fuzzy and far from clear.
Then again, I believe the same sort of thing in the quite improbable eventuality that dr Lipkin would provide credible positive evidence for a retrovirus: I'd take that as evidence that persons thus infected have something other than ME/CFS, since the whole process of diagnosing someone as having ME/CFS is quite fuzzy and far from clear, as it is essentially a diagnosis based on the failure of diagnosing another known disease as (part of) the cause for the patients symptoms, and as the criteria by which people are diagnosed with ME/CFS differ widely, which makes it very likely a sizable group of those who have the diagnosis, or who think they should have the diagnosis, may well have been misdiagnosed.
2. What I think about the demise of XMRV
In case it might
be unclear, here is my own position on the demise of
Second, since clearly many retrovirologists have felt similarly, which has motivated quite a few to do work related to XMRV, and since I believe they are real scientists and not liars or fakers, I believe their assertions - and see e.g. professor Racaniello on his Virology blog:
Third, completely unlike psychiatrists who love fuzzy diagnoses, because that allows them to pontificate freely, and saves them from ever being refuted, I want sharp diagnoses and research findings and precise, clear and unambiguous scientific hypotheses, for only definite unambiguous and clear statements can be definitely and clearly verified or falsified.
Fourth, it's not at all the end of the world, nor the end of research into ME/CFS: Although the XMRV hypothesis did not work out scientifically, it did work socially, to a considerable extent, in both good and bad ways: It worked out as good for patients with ME/CFS, in that it gave rather a lot of - positive and negative, informed and uninformed - media-attention to the disease; it worked out as not so good for the same group in that the patients who spoke for the patients rather often were not scientifically qualified and made quite a few immoral or irrational claims. On balance, I'd guess that the exposure of ME/CFS as a serious disease for which there is very little research money, and that little mostly misspent on pseudoscientific shrinks, is positive, also because, in fairness, it is difficult to blame patients for protesting that they are mistreated, or for failing to know science.
But then there are a few exceptions:
3. What I think about bullies who can't think rationally
Here are the thoughts of some on peoplewithme on the subject of the retraction of the Lo/Alter paper:
O what a lovely thought! O what a rational mind! This is followed by a similar moral thought by V99 (meanwhile restored to her alias: I wonder whether it has anything to do with what I wrote):
It's bastardly to treat ill people as ill, y'all understand! And here is the bright Polly - who differs from the others cited in this section in meaning well, or so I think:
As to the first paragraph: Yes, many times. That's what science is about: Forming hypotheses and trying to refute them, while sticking only with what is rationally testable, empirically tested and repeatedly not refuted. And I agree this may be quite upsetting to people whose hypotheses are overthrown, and to patients who developed a fond overbelief in something that gets shot down by the scientific process of logical criticism and empirical testing.
As to the second paragraph: Well, be rational, Polly: I agree "there are scientists and doctors out there who can see through all", and in fact there are now far more capable retrovirologists, medical scientists and bio-chemists, who all have no personal interest in XMRV (MLV/HGRV/PMRV/XAND) being or not being the cause of ME/CFS, and who do believe that XMRV (etc.) is, given the evidence collected the last two years, not (part of) the cause of ME/CFS, nor is it correlated with it, nor is it dangerous.
Why would all of them lie, and only Judy Mikovits and Max Pfost speak the truth, about the cause or correlates of XMRV/MLV/HGRV/PMRV/XAND?
But then indeed that is what V99 thinks - or pretends to think, for in practical effect she might be Wessely's right hand, making many not so very well-informed persons think that V99 is like most ME/CFS-patients, which she definitely is not:
I suppose it's a well-known fact, in V99's mental world, to be sure, that the nazi's slaughtered the Jews by providing them with dole and by abusing them with psychotherapy.
Here is, just for V99, the "closest thing" to V99s present treatment by the English authorities:
What do I think, then? Polly probably means well; the other two work for Wessely or need help, and probably - I do have the degrees - the latter.
4. Splitting up yesterday's Nederlog
I decided already yesterday - too tired to do it then - that it was better to split up yesterday's original single Nederlog into two Nederlogs: One about the horror that calls itself Bob - the V99 of Phoenix-Rising, as much of a bully but more hypocritical, and just as crassly ignorant, stupid and clueless - and one about the evidence pertaining to dr. Mikovits's cases, who stands accused of various things, by various parties.
The main reason is that I am writing quite angrily in the first part, while I am (I guess) not read by a majority of people who know as much about satire and satirists as I do, and indeed many patients feel upset - or at least claim they do - if they read an effective dressing down of an idiot, since they have hardly an inkling of real satire. (**)
Also, I am not pleading my own cause: I will not, as Maarten Maartensz, become a member of any patients forum where anonymous non-entities are free to bullshit and bully others, while pretending a knowledge of science they clearly do not have, and pretending to serve the interests of "our community", while they are only indulging their egos or their perversions, anonymously, on websites or weblogs others took the trouble to put together.
But it's a fact that I have seen - I think, at least - several tens of people who, in my opinion, were intelligent, informed, honest, and of good will, being driven away from forums for ME/CFS-patients by insane or stupid anonymous relentless bullying in the style of V99 (harsh, ugly, stupid, ignorant) or Bob (hypocritical, ugly, stupid, ignorant). Each of those driven out was far more capable, far better writing, far better educated, and far more reasonable, than the assholes that drove them out, and indeed they were driven out by the assholes precisely because they excelled the assholes intellectually, morally, scientifically and humanly, but alas not numerically, nor in the amount of sheer nastiness, offensiveness, craziness and unreason thrown at them.
See here for what only one or two sickos lording over one forum managed, within 1 1/2 months:
It's for these and similar folks that I speak, since I have since 15 years a large site of my own, that is mostly not about ME/CFS, and mostly not read by ill people, but by persons interested in philosophy or literature, and because I have meanwhile decided, approaching 62, that it is much better for me if I do more philosophy, rather than waste more time, energy and good will on Bobs or V99s: These horrors can only be shut up by making some reasonable demands on anonymous members of forums, such as stating their age and level of education, so that they can be found out if they lie, instead of being ordered by moderators who only cater to dummies or bullies, to respectfully - Respectfully, RESPECTFULLY - lick the ass of creeps and nutcases like Bob or V99. But then again, I can understand if those who desire to make a career out of owning a forum may expect more personal benefit from advertisers than from patients, and it's also true that the Bobs and V99s are easier to manipulate than really intelligent really educated people.
And thus it is in societies and communities as it is with money: The bad drive out the good, while the ignorant masses stand by and gawk and do nothing.
I will be quite amazed to learn of a plausible cause of ME/CFS before I die, what with "patients" like Patricia Carter aka Wildaisy, CFS_since_1998, Bob and V99 to coordinate the patients' efforts, and what with the economy going down, and the DSM-5 coming up, that may kill many, not just with ME/CFS, before it and psychiatry are kicked out of real science.
Then again, I hope I am mistaken, but with "patients" like those I mentioned, any real scientific explanation or treatment must come from the efforts of individual scientists, who also understand that there are only a few Wildaisys, Sinces, Bobs and V99s with ME/CFS, and many far more deserving far more rational patients, who have been silenced by the Wildaisys, Sinces, Bobs and V99s, who were helped by moderators and owners, who tolerated or protected abuse because it was styled "respect", and who tolerated bullshit because it was styled as coming "from patients".
As to ME/CFS (that I prefer to call ME):
Short descriptions of the above:
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:
7. A space-
and computer-scientist takes a look at psychology.
See also: ME -Documentation and ME - Resources
The last has many files, all on my site to keep them accessible.
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