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Nederlog
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

1. Backgrounds
2. An anonymous retrovirologist posts
3. Trouble in Patricia's and Since's house
4. Trouble in Cort's house

1. Backgrounds

The specific background is the recent developments around XMRV and the Lombardi, Mikovits et al. paper in Science, which I considered here:

The general 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 for 2010):

     
ME + me: Relief at last from the Phoenix Forums
      ME + me :  Animal Forum - 3: Slaughterhouse 11

It simply doesn't work for me: There are too few rational and reasonable people, and too many anonymous trolls, ignoramuses and fanatics.

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:


Groupthinking: The kind of thinking, feeling, valueing and desiring that keeps human social groups together.

Much of the thinking that goes into groupthinking is totalitarian in principle, and is made up of principles based on wishful thinking of the following kind:

- Our group is best
- Our leaders are good, noble, well-intending and wise
- Our ends are great, important, feasible and moral
- Whoever belongs to Us is better than whoever does not
- Our ideals are noble, ethical, moral and humane
- Our ideas and ideology are true, adequate and well
  thought out

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

- Whoever does not belong to Our Group is less good (perfect, humane, religiously or racially proper) than whoever does.
- Whoever opposes Our Group, Our Leaders, Our Ideologyor Our Faith is, therefore and thereby, morally or humanly or intellectually inferior.
- Whoever does not conform to the practices and principles current in Our Group is immoral or insane.

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:

     ME + me :  The tragi-comical human fundamental problem

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:


Ecoclimber 1

Good question Daffodil. Ask Mikovits or Jolicoeur. Well don't ask Jolicoeur as he doesn't know either. I suspect given the BWG results, that the WPI could not validate their XMRV positive patients as being positive which were needed for his project. The bottom line is that an agreement was broken. I told Cort many months ago to prepare the forum for negative news on XMRV. He can verify it. The WPI promised positive news and reports in August. Where are these reports?

Some of the information that I post here is actually transported to the other forum to be denigrated. Many well know retrovirologists..no not Miller or me...have gone to the other forum under different pseudonyms in the same manner as those members do when they post elsewhere. They attempted to inject some impartiality, scientific education and reasoning or enlightenment to those members only to be debase and demonize to the point that they withdrew. What it accomplish is the fact that it validates Wessely corrupt theories on ME/CFS patients as being psychosomatic paranoid delusional. The scientific community especially among retovirologist is a tight knit community. The word gets out. Now they are known as the crazies. A stigma that the ME/CFS patient community can ill afford. The WPI castigated Peterson when he left the WPI. A man who spent decades helping the ME/CFS community.

We had and I am speaking of Miller and myself a great research project that would have selected patients under the highest standards possible far exceeding the CCC definition. We were looking for ME patients that exhibit certain symptoms associated with ME/CFS. I have to speak generally as some of this information is confidential. But we felt that we could find a cause and a possible cure for these ME patients. The research project was pulled because of the adverse and negative publicity we received. They had no idea what we were trying to do and still don't. The negative publicity was unwarranted both on myself, Miller and the Fred Hutchinson Cancer Institute.

These institutions are funded by both private and public community donations. The last thing they want is negative publicity directed at their institutions on controversial research projects.

The lack of impartiality affecting research by other retrovirologists is astounding. We are all part of some great government plot designed to undermine research into ME/CFS. Mikovits, herself, said the same thing. I am not part of any government conspiracy nor are any of the retrovirologists that I know. I find that insulting. And to debunk this heresy, retrovirologist want to find another retrovirus. It is not in their own interest to disprove or cover-up that their is a retrovirus out there. It's job security for them and a huge increase in their budget if they could discover a new retrovirus. So this dog don't hunt.

According to this other group, St. Mikovits can do no wrong and to my knowledge, there is not a scintilla of criticism directed at her or the WPI. If everyone wants to put all their eggs in one basket be my guess. If they want to put their trust in Dr. Kenny de Meirleir who is not a retrovirologist, or Hemispherx Biopharma good luck. I would check their background first though.

As a result, and this is a hint, a particular organization can forget about ever applying for funding for ME/CFS research projects from many of the large foundations of which I am a member and they are substantial.

I can tell you this, that there are a number of research projects in the pipeline which I will not discuss here for fear of the negativity they will receive because they are not part of the WPI.

Hint: Silvermann in Tahoe. Maybe trapping for mice perhaps :-)

I will cease posting on here now for an interim period and will not respond to any more postings or comments.

Peace,
Eco

Maybe they will get the irony that xmrv is dead or maybe not.
http://www.youtube.com/watch?v=e6Lq771TVm4


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.


Ecoclimber 2

Since this thread and this section of the forum is to keep the patient community informed on XMRV, I will post some information on here that has just surfaced which is now coming to light. This information was known to some a few months ago but the evolution of time and additional research has highlighted this fact that cannot be ignored. I don't like being the bearer of bad news.

I also believe that it does a disservice among the patient community by giving patients a false sense of hope without any foundation of scientific data/proof or research. To make connections of XMRV with other associated diseases and now HGRV as causing ME or other associated diseases without proper scrutiny by the scientific community on their proof/data or research, is outside normal behavior on the part of the institution and the scientists involved. I believe that the WPI and Mikovits should apologize to the patient community.

There is information and an accusation made by another blogger that is indicating fraud at the worse or sloppiness at the very least. This information was given to her by an unknown source. I do not know the source of the information but heard about it circulating among several retrovirologists.

I don't like linking to posts where bloggers have a certain prejudicial and adverse view to xmrv but this cannot be ignored and if the moderators wish to take the link down that is fine with me. At the same time this is not a conspiracy, innuendos or unsubstantiated rumors but indeed a scientist who wish to disseminate the information through Erv's blog. I do not know who the person is so don't ask me. I just know some of the background information.

Since Mikovits stated after the BWG study that there is no viable assay to detect XMRV within blood,..."The conclusion of the Blood Working Group was that we don't have a reproducible assay to detect XMRVs in the blood"... I hope that the WPI will refund the costs for the lab costs for patients who submitted their blood samples for testing.

http://scienceblogs.com/erv/2011/09/...e_syndr_29.php


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,

"The conclusion of the Blood Working Group was that we don't have a reproducible assay to detect XMRVs in the blood" (dr. Mikovits)

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:


Ecoclimber 3

Sigh...throw up hands....I pointed to a link that would provide information for your evaluation that is all. Each patient can decide for themselves how relevant that information is concerning the debate on xmrv. You don't have to read the comments. This is how science works. You look at all viewpoints including opposing viewpoints in order to make an informed judgment on this.

I admit there is so much disinformation swirling around the this issue and for some it threatens their personal reality of the issues. All I ask for is an open mind and apologize if this information is discomforting for some.

You can follow another blog by Professor Vincent Racaniello that discussed the controversy surrounding xmrv etc.

http://www.virology.ws/2011/09/29/ad...you-are-wrong/

or HERE:

http://www.virology.ws/2011/09/27/tr...ot-scientists/


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 of identity.

Thus it is, and I am confident in my pessimistic guess because I have seen myself and others try, but - take heed, professor Racaniello! - "Mit der Dummheit kämpfen selbst Gőtter vergebens" (Schiller).

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):


1.  Anthony Komaroff Ten discoveries about the biology of CFS (pdf)
2.  Malcolm Hooper THE MENTAL HEALTH MOVEMENT: 
PERSECUTION OF PATIENTS?
3.  Hillary Johnson The Why
4.  Consensus of M.D.s Canadian Consensus Government Report on ME (pdf)
5.  Eleanor Stein Clinical Guidelines for Psychiatrists (pdf)
6.  William Clifford The Ethics of Belief
7.  Paul Lutus

Is Psychology a Science?

8.  Malcolm Hooper Magical Medicine (pdf)
9.
 Maarten Maartensz
ME in Amsterdam - surviving in Amsterdam with ME (Dutch)
10.
 Maarten Maartensz Myalgic Encephalomyelitis

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.
8. Malcolm Hooper puts things together status 2010.
9. I tell my story of surviving (so far) in Amsterdam/ with ME.
10. The directory on my site about ME.



See also: ME -Documentation and ME - Resources
The last has many files, all on my site to keep them accessible.
 


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