Oct 2, 2011
me+ME: A little more about forums and XMRV (etc)
I wrote yesterday about forums, patients and scientists and repeat a little today, limiting myself to main points
1. About forums
I have been a member of several programmers' forums - not concerned with ME/CFS at all - for over ten years now, and also have regularly visited other programmers' forums, and while I have seen a few quarrels, none were as bad as what I've seen on ME-forums.
Why is that? It's mostly a combination of things:
Groupthinking, as outlined yesterday; wishful thinking - and let me quote that for your edification, since this, together and in conjunction with groupthinking, is the main reason so many humans are effectively mistaken about so much, and also about things they could have been right about, and done something rational and reasonable about, if they only had had it in them to reason a bit better:
Note also that this is wishful thinking by ill people who have had much discriminatiion to deal with and who have an intense hope for a biomedical explanation and treatments - it's not that it is hard to understand, even if it is not easy to agree with.
To continue with the reasons why discussions on forums tend to derail:
Lack of scientific knowledge in almost all members (that alas does not lessen the urge "to contribute" to the discussions nevertheless); the presence of some trolls, who either are malicious people in it for kicks, or are anonymous members of interest groups trying to steer the forum in their interests; the nearly total anonymity of most members, combined with lack of any reliable information on nearly all of them (few have a website that allows learning some more about their views and capacities); lack of rationality and lack of reasonability in many posters, both fuelled by anonymity and absence of any serious personal sanctions; and finally bad moderation.
So forums for persons with ME, as they are, so far as I have seen them, do not work for me: There are too few rational and reasonable people on it (that I can recognize), and there are far too many anonymous trolls, ignoramuses and fanatics for my tastes, and I simply do not want to write against anonymous trolls, ignoramuses and fanatics. It is simply a loss of my time and a waste of my moral efforts.
On the positive side: ME-forums do work as places to find information about ME, and also to hang out with persons who - whoever they are, whatever one might really think of them when one were to know them better or in real life - seem to know what one is talking about when one wishes to talk about ME/CFS, and who may have something useful or interesting to tell about ME/CFS.
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 by way of judging who - they believe, with or without good grounds - is or writes for or against - what they believe, with or without good grounds, are - their own interests.
I do not see any radical changes in this happening - unless and until
With either change, there are better chances for the intelligent of good will (always a minority, usually persecuted or at least blackened by the far more common more ordinary folks).
Until then owners and moderators of forums can and will use forums and members towards their own ends and interests, precisely as happens with political parties and interest groups.
The only realistic chance for the more gifted and better educated persons with ME to be heard and read (without having to foist of attacks by dimwits and trolls much of the time) is to have one's own site, or to start a limited forum of members like oneself (which is not easy if one is ill).
2. About XMRV (etc.)
I have been reading some of the discussions on Phoenix Rising on XMRV. Here is my take:
There is little rational ground that I can see to hold that HGRV (or MLV or XMRV) is "the cause" of ME/CFS or indeed even as much as 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 MLV), based on blood tests, fell to the ground with the admission that there is no good test for XMRV in blood.
This means that the correlation between XMRV (HGRV, MLV) 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.
There is a chance that dr. Lipkin's study will establish - or rather: re-establish - the correlation, but given the results of the Blood Working Group, this chance seems not high.
Even so, it seems the XMRV-story has helped patients with ME/CFS, in that it has made their illness and their plight better known in the media.
In that sense, and on balance, it probably was positive for patients, since it is quite likely that without the publicity around XMRV the events around ME/CFS would have continued as they did before it: Little funding for real bio-medical research; much deference in the media to the psychiatric purveyors of bullshit about it; funding that mostly disappeared in psychatric charlatans' pockets; and little real progress in biomedical research or basis for hope for patients with the disease, even for as little as better funding for biomedical research into ME/CFS.
P.S. Corrections, if any are necessary, have to be made later.
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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