Oct 1, 2011
me+ME: Forums, patients, scientists
And now back to ME and XMRV and the problems of and between forums, patients and scientists. I'll treat it in somewhat general terms, and in part by quotations and links
Exit XMRV? Science article "False Posi±ive"
Exit XMRV? On Science article "False Posi±ive" and other articles
background about forums for/with ME-patients, as far as I am concerned,
since I gave up on them as a member in May and August 2010, is here
(and there is more - see Nederlog index
On the positive side: Forums work to find information. On the negative side: Forums do not work as a place for advocacy or rational argument - and the last doesn't work because most members do not know any or much science, but judge everything from judging who - they believe, with or without good grounds - is or writes for or against - what they believe, with or without good grounds - their interests.
I have analyzed it here in general terms, in my Philosophical Dictionary:
Usually the members of groups are hardly aware that their membership is to a large extent emotionally and intellectually based on principles such as the above, even though it is very easy to see these principles at work in the mental make-up or the behavior of members of other groups - political parties, religious organizations, soccer supporters, but also firms, schools, universities etc., for one way the human animal is social is by actively belonging to groups and by supporting the ideas, ideals, morals and practices that constitute, regulate or support these groups.
Also, it is noteworthy that the above principles involved in most group-thinking are relatively innocuous, and that most groups also practice such principles as
Most groupthinking involves prejudice of all kinds, and the best excuse for this seems to be that, since human beings are social animals, there is an instinctual motivation to wish to belong to and to support a human group.
And I have analysed it here in particular terms, at least as regards its main source:
2. An anonymous retrovirologist posts
Well... on to Phoenix Rising, on which I found the following recent items, here reproduced with links, and all by a member of that forum who call himself or herself Ecoclimber, but who seems to be a retrovirologist:
This sounds fair enough, and the last link is Monty Python's Dead Parrot sketch, and it is encouraging to see that some retrovirologists have attempted to talk some sense into the majority of the members of the MECFS-forum I am not even allowed to read by its owners. They are to be commended for trying, but I am not amazed it doesn't work: It can't, in an anonymous virtual "community" engaged on groupthink, where most members simply don't know enough of science to judge science rationally, but believe they have a strong personal interest in one particular theory.
Then again, part of the reason the MECFS-Forum grew so bad and fanatic is that the majority is prejudiced or incapable of judging rationally, but not held back by any personal responsibility or accountability, for they are anonymous.
And a good part of the reason reputable scientists do not want to appear with their own name on forums is that they risk being abused, with their own name.
The result is a generally spooky anonymous virtual discussion between virtual aliases with avatars but no known human status or properties outside the context in which they write anonymously.
So it's also not certain Ecoclimber is the manner of person Ecoclimber claims Ecoclimber is, but I will be both polite and rational and say I believe him, or her.
Erv is a blogger who studies retrovirology, who said from the beginning that she didn't believe the Lombardi-Mikovits paper.
I don't think Ecoclimber's last paragraph is fair (and indeed I don't agree with all he - I shall suppose - writes), because I don't see a good reason to believe the WPI or others who offered a test offered one in bad faith, while it was clear that it was experimental.
But I agree there is little rational ground that I can see to hold that HGRV (or MLRV) is the cause of ME/CFS or a good candidate for that position, and one main reason for that is that the highly significant association between people with a ME/CFS diagnosis and XMRV (or HGRV or MLRV), based on blood tests, fell to the ground with the admission that there is no good test for XMRV in blood.
Which is to say that the correlation between XMRV (HGRV, MLRV) and persons with ME/CFS that was a main point of the Lombardi, Mikovits et al. paper fell to the ground,
so that any talk of causation is at the very best both quite speculative and without any good tool for empirical testing. This last fact also makes it an untestable hypothesis, at least until there is an agreed upon valid test to establish the presence or absence of XMRV (etc.) in blood.
Here is a last post by Ecoclimber lifted from Phoenix Rising, with the link to the original first:
The last two links are indeed to professor Racaniello's Virology blog, and provide some incisive pieces by him, followed by reams of mostly anonymous comments, that are quite often both irrational and unreasonable.
Professor Racaniello is to be much commended for being open, fair and willing to host these arguments, which he presumably also reads, which is not something I get any joy or enlightenment from, and indeed mostly did not read these comments. (But then I don't have many illusions to lose about man's inhumanity to man, if given the chance and no responsibilities exacted. And I dislike bad arguments.)
3. Trouble in Patricia's and Since's house
By the "house" in the title I refer to the MECFS-forums I was thrown out of in July 2010, for being rational and reasonable, since I have found that both forums are full of natural born sycophants who get a kick out praising Leaders and Moderators for being Leaders and Moderators, sometimes with real Stalinesque fervor as well.
The same folks are prone to argueing that whoever disagrees with the current policies, fashions or prejudices on a forum is befouling The Owner's House, and fondly engage in further similar verbal asslicking as if that is the right way to behave to Owners, Leaders and Moderators. (It is - if you want to be loved by them: Yes, I do know. See above. I just don't approve of hypocrisy.)
Anyway... not having personal access to these forums I know little about them, and sleep the better for that, but I am sometimes informed about them, and lately have been told Since and Patricia - the Owners - have a quarrel, and so does Patricia with most of her erstwhile followers, and that because Patricia may believe that e.g. professor Racaniello might be right, and her former Scientific Leader Gerwyn Morris might be mistaken.
I write "former", because Gerwyn - a true believer in XMRV, HGRV, MLRV etc., but not necessarily a bad chap - took exception and left that forum, it seems in a huff, leaving it leaderless as regards science or at least as regards "science". (I can't say, not having read that forum for over a year, but I can say that Gerwyn and I do not agree on XMRV etc. Then again, unlike many of the folks on MECFS-forum - it would seem - I don't hold that against him.)
So... maybe that forum will split or break up or get into infights. As far as I know - which by now is not far - things have not at all been going as the majority of the folks there hoped and believed. Then again it is most like a True Believers Community - the flat-earthers of ME-land. It probably can't be helped, which is a great pity, as they seem to have irritated quite a lot of retrovirologists of good will, for one thing.
And in the end it are real scientists such as retrovirologists who must do the necessary science to find the cause of ME/CFS, so it is best to treat them with care and politeness - which again is made more difficult if they are anonymous, which in turn seems necessary to save them from abuse by a few of the most benighted or fanatic or desperate.
"So it goes..." (round and round in circles of cultivated irresponsability).
4. Trouble in Cort's house
By "Cort's house" - not my invention, but that of his proud followers - I mean Phoenix Rising. That too has its trouble, and it is called Dainty: An anonymous person with a bunch of anonymous friends who has or have Cort's agreement to Dainty's "exciting vision" on moderating - which is that some sort of secret police is being instituted on Phoenix Rising:
Anonymous moderators, all "responsible" - their term, my quotemarks - to the anonymous Dainty-person, who is the sort of person that loves editing posts of others that she finds "inappropriate", so far as I could see on no cogent grounds whatsoever. (But that only makes it more fun, to some.)
A secret policeman's ball, all as ever "in the interests of Our Community".
Being a psychologist, I can stick my own appropriate labels on people who love correcting people, especially when covered by authorities, and with a license to do it anonymously. And it may be - who knows? - that lots of folks in Cort's house like bondage & discipline, especially if it is called by "appropriate" euphemistic names and obfuscations. (If they don't there will be trouble.)
Anyway - "Sigh...throw up hands...." - I am glad not to be even a virtual "member" of these virtual "communities".
I am out of either
of them for about 1 1/2 year now, and I don't feel the worse for it at
all. Also, I do follow Phoenix Rising,
more or less, and selectively. And no - it won't get any better, is my
confident guess, and it probably is
not possible to make a much better ME-forum if the members are
anonymous and are freely admitted, without selection and without proof
And I can better spend such time and health as I have mostly on philosophy and logic and other matters in which I have a real personal or intellectual interest rather than on writing a lot about and around ME.
P.S. Corrections, if any are necessary, have to be made later.
-- Oct 2, 2011: Made a few corrections, mostly missing words.
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.
|home - index - top - mail|