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Nederlog
Oct 8, 2011           

me+ME: Two years of XMRV + recent personal EMs


Sections

1. Two years of XMRV, to the day
2.  Recent personal e-mails:
Oct 3 - 1: The Deckoff-Jones Blog
Oct 3 - 2: idem
Oct 3 - 3: The VIP Dx and WPI bloodtests
Oct 3 - 4: MECFS-Forum, Erv-blog, virologists
Oct 3 - 5: Amy Dockser Marcus writes about it
Oct 4 - 1: Erv's blog, V99, Peterson returns to WPI?
Oct 4 - 2: Tsouderos, Mikovits
Oct 4 - 3: Respect rats, moderators, Mikovits, Erv, Crippen
Oct 4 - 4: Cunts, honesty, Erv, V99
Oct 4 - 5: Erv blog, Deckoff-Jones blog

Oct 4 - 6: Erv, Mikovits
Oct 5 - 1: Science, Nature, Gardner

Oct 6 - 1: Ms Kennedy
Oct 6 - 2: Erv's blog, Gardner
Oct 6 - 3: 5AZA
Oct 7 - 1: Mrs. Whittemore Q&A as reported on Erv's blog
3.  Saturday October 8

1. Two years of XMRV, to the day

It is today two years to the day that the first news about the publication in Science of the XMRV-study reached me, and many others.

                Dramatic WPI Announcement Imminent


Just a heads up. The CFIDS Association is reporting dramatic news is imminent from the WPI. Reportedly a paper on ME/CFS is going to be published in the Journal Science. Science is not your ordinary scientific journal; it publishes on a variety of scientific topics and it's an extremely important journal and reaches a huge audience. Just the fact that the a paper on chronic fatigue syndrome is being published in Science is a big deal.

Apparently we should know more by Friday.

 __________________________________________________

2. Recent personal e-mails

It seems after precisely two years, this has ended. Here are parts of recent e-mails I exchanged with someone who is well-informed about ME/CFS, whom I shall not name nor quote, in view of the hang-ups of various anonymous posters about ME/CFS.

So what follows is either my own text as written in e-mails; a summary of something my correspondent said; or a quote from someone else, that is always identified in what follows, and usually indented and coloured to make it clear it is a quote.

The main reason to gather and upload it is my irritation with much of the prose I read on forums - which I can understand in a human way, and as a psychologist, but then indeed what I also understand is that the internet + anonymity makes many dumb or ignorant people say, claim and pretend very much more than they would do if it could be found out who really wrote that shit, with real name and real address.

Incidentally: This phenomenon of enormously rude presumption and functionally anonymous bullshitting and bullying is not limited to patients with ME/CFS: It tends to occur everywhere where ordinary men congregate and talk, and believe they can do so without being made personally accountable and responsible for what they say. Where the majority of the dumb, the cowardly, the mean and the hardly sane or educated can take things over, they do, and will hooliganize all civil discourse to pieces, often covered by moderators who are not interested in truth or morality, but in plugging their own interests, also anonymously, but sanctimoniously, "for our community", because you are not "appropriate" (and in quite a few cases I've seen because the moderated person's IQ is some 25-50 points higher than the bright light that is moderating, for lack of having anything better to do, with such a tiny brain).

Anyway... it is very annoying, and so I publish on my own site what I am not allowed to say on "public" sites moderated by hypocritical PC dimwits.

I could have started my quotations earlier or later, Monday October 3 is a convenient point in time, since up to that date things with XMRV and the WPI seemed to be going well - and in case you want background, consult the index for Nederlog.

3.1: Monday, Oct 3: When I woke up I found an e-mail by my corres-pondent, who thought I might have heard the news that the WPI had been closed down, that was to be found on the blog of dr. Deckoff-Jones, that in fact I haven't often read. Here is my reply:

Interesting, and no: You expected wrong, as I expect you expected: I am only up a brief while.

It seems not only exit XMRV but also exit dr. Mikovits, and probably exit dr. Jones.

But now I am going to read what's on PR-F.

Incidentally, "PR-F" abbreviates "Phoenix Rising Forums". This also got in NL of October 3:

me+ME: Exit dr. Mikovits

         ---------------------------------------------------------

3.2: Monday, Oct 3: My correspondent - who is quite informed about ME/CFS pointed out that in fact dr. Deckoff-Jones had left the WPI at an earlier date, and I replied:

Yes, you're right: It's dated yesterday. But I hadn't seen it, nor seen it reported on PR-F (it wasn't, last night), and anyway usually you know about things in ME-land faster than I do.

I think I read it all through (there are two threads on PR-F, and comments on Jones's Blog). It seems exit XMRV, exit Mikovits, exit Jones. Curious how "the patients' community" is going to react. Well... some are asking their money back, but then these are anonymous and may be trolls.

         ---------------------------------------------------------

3.3: Monday, Oct 3: My correspondent points out that dr. Deckoff-Jones has already left WPI several weeks ago. I replied:

There you are: You are better informed. I didn't know, and only have read her blog incidentally.

My correspondent writes about blood draws that were to be made. I replied:

It seems unlikely it will be tested, and dr. D-J makes an opposition between the VIP Dx test results and the WPI test, as if she might want to suggest the BWG did not work out as the WPI expected because in fact the VIP Dx test was used. If that is her strategy, it is another ad hoc argument to try to save the WPI's failing blood tests.

I never took much interest in blood testing. I lacked the money, the faith, and the health for having tests done.

In fact, my correspondent had arrived at a similar conclusion. My correspondent mentioned that many patients on the forums are loyal to dr. Judy Mikovits. I replied:

My guess is dr. Mikovits will be dismissed. If the WPI wants to attract any funding for any ME/CFS related research, this is probably necessary, but it also seems, from the lack of news releases, and dr. D-J's blog, that the personal relations have gone sour.

My correspondent considers it messy and mentions the WPI Facebook page seems taken off line. I replied:

Indeed it's messy. I haven't looked at the MEA-site yet (not the FB one, that I anyway don't visit unless I have to) and only looked at ERV's site twice, quite a while ago.

That the WPI Facebook site is down was on a PR-F thread, attributed to a tweet by Andrea Whittemore.

There's a mention of two threads on Phoenix Rising, and I replied:

Yes, I read both, but there's little information on either.

I am putting it in a NL, mostly because it is "an interesting development in ME-land". It's also 2 years minus 5 days I first read about the original Science-article, and one thing that seems fairly certain is that it got resolved fairly quickly, I'd say, taking the resolution to be (some may disagree) that the BWG showed that the evidence Lombardi et al supplied to relate XMRV to ME/CFS doesn't hold up, in spite of having been passed by Science.

Personally, I don't think that's a pity, because being infected with a dangerous retrovirus is not a good thing.

         ---------------------------------------------------------

3.4: Monday, Oct 3: My correspondent informs me there are also consequences on the MECFS-Forum (the owners of which deny me any and all access since July 2010) viz. that one of the directors of the International ME Association - apparently a pet project of the owners of MECFS-forum - one Keith Baker has quit the MECFS-Forum. I replied:

That's the second or third, after Gerwyn and V99, although I am not certain about the last.

I did just read through most of ERV's blog, including 143 comments. Actually, it's not so bad: The majority writes better and is more informed about science than the forums for patients, and most are polite. Then again, I find it odd to read over and again from one alias and another alias that yes, they are real scientists, yes, they know science, yes, they made plenty of Western blots or what not. I find it a bit odd, if very human, real scientists on a real scientific blog, that's indeed public, do not want to state their real names.

Also, the names "Gerwyn", "V99" and "MECFS-forum" are much despised on that ERV-blog, in the comments, apparently because of what the anonymous scientists of the forums read on the lastmentioned forum or got served by the first two on their own forums. (I read hardly any of it: I can't read the ME-F, and I have only briefly plowed through Racaniello's blog and the comments there.)
(..)
The shit will be hitting the fan if Mikovits indeed got dismissed, which seems likely, from Deckoff-Jones's blog.

In any case, the perusal of the ERV and Racaniello blogs convinced me very few retrovirologists have sympathy with Mikovits. And there now is a virology congress ongoing in Amsterdam on which Coffin is the main speaker, and I wouldn't be amazed there is press there, to query him about XMRV, as this was suggested on the ERV-blog.

         ---------------------------------------------------------

3.5: Monday, Oct 3: I notify my correspondent:

One of the rare times I may be first in finding something:

Amy Dockser Marcus writes about Mikovits leaving WPI

         ---------------------------------------------------------

4.1: Tuesday, Oct 4: My correspondent writes in reply about ERV's blog and I answer:

Again, you know more. I have only briefly looked twice before at Erv's blog, but you may well be right. One of the things that struck me on her blog this time was that she listed explicitly the research done by Wessely and by Van der Meer as early evidence against the Science paper. The problem with them, next to others, is that their patients most probably do not have ME.

Anyway... there may be and have been lots of things going on behind the scenes only the folks behind the scenes know, including prior conflicts of Judy Mikovits and erstwhile colleagues.

My correspondent mentions V99 on the MECFS-Forum I am not allowed to read, and says this person is considered very aggressive by many. I reply (remembering this cognitively challenged person from over a year ago):

And unbeloved on Erv's blog, were she was correctly diagnosed as an ignoramus in science.

Late the previous day I had found that Amy Dockser Marcus had written about the developments in the Wall Street Journal, and mentioned that in NL of October 3: Scientist Who Led XMRV Research Team Let Go, and my correspondent tells that there is more information about dr. Mikovits. I replied:

Yes, that seemed in the cards. As I said before, I think, WPI might try to come to an agreement with Peterson, whose name still is in the title.

         ---------------------------------------------------------

4.2: Tuesday, Oct 4: My correspondent writes about an article by Trine Tsouderos: Manipulation alleged in paper linking virus, chronic fatigue syndrome that I also mention in my Nederlog of October 4, and in reply I vary on the title of that Nederlog:

It's a mess, and here is a quotation from Erv's blog, since I read most of that, and you gave me some background I didn't know:

http://scienceblogs.com/erv/2011/09/xmrv_and_
chronic_fatigue_syndr_29.php

255. Hooray, hooray, the witch is dead!!!

I never thought it would happen so quickly. I could not be more delighted. Thank you so much for your work & that of the many others.

Brilliant!

Posted by: :o) | October 3, 2011 5:57 PM

That's about Judy Mikovits, also. I don't know about the slides controversy. It may have an innocuous explanation, but my guess is that some retrovirologists will want to argue the Science report itself was fraudulent. That would explain a lot, but it would have been very stupid on Mikovits' part, apart from the morality of it all.

Anyway... more to follow, undoubtedly.

         ---------------------------------------------------------

4.3: Tuesday, Oct 4: Meanwhile, the matter is also discussed on Phoenix Rising, where there also has been initiated A New Moderator Policy under one Über-Moderator that calls itself Dainty, who has secret moderators, as per the best Soviet-model of Pravda-propaganda, one of whom - it seems: one must guess about all members now whether or not they are secretly moderating also - calls itself SOC (and reminds me of Jennifer Spotila of the CAA, but I may well be mistaken). They are making moderator trouble, in the typical PR-F Nanny-style, for one Ecoclimber and for Angela Kennedy, the latter a fairly well-known ME-advocate, who posts under her own real name. Also, my favourite Phoenix Rising nincompoop has piped up, so I replied:

Yes, and just now the egregious respect rat Bob tore into Ecoclimber. My problem with the latter is that he or she doesn't write very well, so if - indeed - it is a retrovirologist he or she may have been hitting the bottle.

My correspondent mentions the craziness and systematic irresponsibility and unaccountability of secret anonymous moderating and asks whether SOC is a secret moderator, which it looks like, but that presumably also is something that mere lowly members of Phoenix Rising are clearly not fit to be told, namely who is slashing up their posts or threads, in the name of "our community". I reply:

No idea. It - possibly a she - claims to be or have been a scientific researcher. Possibly so, but personally I have gotten rather ill from claims I get no means to validate. Also, I do have a valid reason to mask my identity, and have a large site for whoever wants to check how stupid and ignorant I am, but I do not really see why (former) researchers cannot say who they are, if the worst that can happen to them is being mailed by V99.

My "valid reason" is that my former landlord, who very likely is an Amsterdam drugs-mafia boss, follows my sites and searches me,  with no kind plans and after earlier death-threats, but then, in an atmosphere where anonymous ill posters are considered to be the equivalent of terrorists, I rest my case, as an apparent mere wimp who is afraid of the Amsterdam drugsmafia, after having been threatened with murder by them, and also nearly gassed. Clearly, I should believe that is as nought to the enormous dangers that professor Wessely runs daily, from such enormously dangerous individuals as V99 and other ill women.

Anyway...back to the mails, in which my correspondent writes about XMRV, Erv and the Whittemores, and I reply:

Yes, same here. I like the Whittemores, because they do something, and indeed have a reason and the money and clout for it. I don't know the science, and have said so from the beginning, unlike most patients who wrote about it.

My own position is that I don't know the science (retrovirology) - but I do know about methodology and statistics, which are relevant - and I have seen enough scientists to know (1) there are many kinds and (2) there's a lot of infighting between colleagues.

It may be that Mikovits was and is sincere, and believed to have found a major breakthrough. If so, I don't mind her talking to the media, although a tie in with autism is supposedly risky, in view of Wakefield (which case I only know very superficially about).

Also, it may be that Mikovits was a fraud, in which case she is nuts (since you don't perpetrate such a fraud on ill people while being sane), but then again she is capable of saying anything.

My correspondent considers dr. Mikovits and I replied:

If I were her, I probably wouldn't have mailed with patients, but then I suppose, also supposing for the moment she is honest, this is mostly a matter of personality, except that my own take would also be that I don't have time to mail with many patients, and it would not be fair to mail with a few.

My correspondent mentions that Erv is considered to have a foul tongue, and that Andrea Whittemore got provoked on Erv's blog to tell Erv to "fuck off". I replied

I tend not to care much about people telling other people to fuck off. It seems to happen all the time in the US anyway, and at least it is clear and was not anonymous.

My correspondent considers the wisdom of the ways of the WPI and dr. Mikovits over the last year, and I reply:

Yes, I agree but I am also fairly tolerant of different personal takes and approaches, and I am not much into standards of professionalism. If people think - and most at the WPI did - they produced a medical breakthrough, they will talk, probably not always scientifically and precisely. I don't mind, but it is true that what matters in the end is the science and whether it stands up.

My correspondent says Erv - Abbie Smith in real life - is considered to be personally insulting. I replied:

Well, it clearly is personal between Mikovits and Smith, for some reason I don't know. It would be nice to know why, but it's clear Smith doesn't mind mudslinging.

My correspondent details that Erv has called dr. Mikovits "a gigantic cunt", and I replied:

If you detest someone, for whatever reason, and it is a she, that is not so very abnormal. It's unwise to do it in public, but has the merit of being forthright.

Incidentally, this is rather more common in the Dutch language than in the English language, but I am an adult and not a prude.

My correspondent also says Erv calls people with ME "crazies" while a dr. Crippen, who wrote in the English press, called them "loonies". I replied:

I don't think she or Crippen is entitled to call patients crazies or loonies, but I agree a few of them are, and also may not have ME. But then they should be specific. Then again, either of them can refer to Wessely and co. and say "Who are we to disagree with an authority like that?!".

I end that mail as I ended my Nederlog of that day:

As far as I can see there's something personal between Smith and Mikovits, and maybe Smith is also fuelled by someone more senior, such as her Ph.D. advisor. I don't know and I don't much care, except that it would be nice to know how valid the science in the 2009 Science paper was (was it an honest mistake, a fraud, or is there really something to XMRV, in medicine if not in ME/CFS?).

But most of this will pass, without anyone being much the worse for it, except perhaps Mikovits, the WPI and some of the more fanatic patients mostly at MECFS-F. For the rest of the world it is an obscure squabble about something hardly relevant to them.

         ---------------------------------------------------------

4.4: Tuesday, Oct 4: My correspondent, who is not Dutch, explains that to call someone "a gigantic cunt" in English is very rude and impolite, and even "cunt" is rarely mentioned in polite English, and I replied:

Indeed, and I realize there is a difference, and "cunt!" ("kut!") is a fairly normal Dutch swearword, especially amongst better educated women, usually to register disapproval. Also, for at least a 100 years in all classes "cuntwife" ("kutwijf") is spoken in anger of a woman one despises. But there are national fashions in scatology, is true.

My correspondent mentions a presentation by Mikovits and Peterson when Mikovits showed slites relating to autism and Peterson seemed a bit uncomfortable by this being discussed. I replied:

Yes, and I think you wrote about this before, and you are probably right in principle. The problem is - supposing Mikovits and Peterson to be honest - that they are human and like applause, and that as research scientists they need funding. So even if there are understandings about what one should and should not say, my guess is that, in the rare event that most scientists speak to a journalist, they will gild their wares.

My correspondent says some more about Erv and I replied:

I also looked a bit more into Erv's writings, and I can understand where she's coming from, I think, namely that part of her attitudes are due to being a scientist in a country full of born-again idiots who just know that evolution is from the devil.

Then again, she probably has protection for her blog, from people with clout in her university.

My correspondent mentions V99, who is one of the leading lights of the MECFS-forums and I replied:

I tend to mind the nastiness less than the stupidity, which is one of the exasperating things about V99 and many others, all covered by anonymity. I got rid of the dole-problems, three years ago, by naming and shaming bureaucrats who - I found - have that now referred to in their profiles on line, which won't help them, but I can't do the same with these anonymous stupid trolls.

         ---------------------------------------------------------

4.5: Tuesday, Oct 4: I looked a little around on the Erv-blog-website and concluded:

I looked a bit into it, and it's not bad, except for the language, that seems rather uncalled for, and therefore suggests something between Smith and Mikovits.

Also, I got hold of a blog by dr. Deckoff-Jones, and comment as follows:

This I find rather disingenuous.

From this point on I quote dr. Deckoff-Jones - in blue, indented - and comment myself in black, less indented. This all as in the mail, except for the colours:

Tuesday, October 4, 2011

No Good Deed Goes Unpunished

Yesterday made clear that it is going to be a circus. All that's needed is cotton candy and clowns. Annette Whittemore is still selling fairy dust

Too whom?

and the fate of humanity depends on whether Judy Mikovits was perfect or not. It's more exciting than a high wire act. The CAA, the folks at the CDC, most of the scientific community are all gleeful. They wanted to turn the iconoclast into Joan of Arc. Since she isn't a saint, the Salem Witch Trials is a better metaphor. If the scientific community had actually been impartial, they wouldn't be so happy. They say it needs to be about the science, not the scientist, but in fact, it was, and is, very personal, not about the science at all.

Well, clearly it's always about both.

I am not a lab scientist and cannot evaluate the slides written about in yesterday's Chicago Tribune. I refuse to read ERV's blog on general principles.

That seem a bit stupid: This is how prejudice works. (I got first to that when I was 16 or 17 and realized everybody in my CP-environment just 'knew' how treacherous and bad Orwell was, as a person, but no one had read him.)

Trine Tsouderos seems to be slumming for sources. And Annette Whittemore, who has no viable option but to blame Dr. Mikovits for everything that ever happened at the WPI, has turned to the journalist with an agenda. The debunker. Necessity makes strange bedfellows. Even discounting my own experience of Dr. Mikovits, which makes fraud as an explanation for an error extremely unlikely,

But not impossible?

it makes no sense that she would intentionally subject herself to the possibility of that fraud being detected by using the same slide again on purpose.

True, and a fair argument. Then again, if she is a fraud, there is joy in getting away with it. (Criminals are the same: Proud of their skill of deceiving ordinary folks.)

The only person who has a reason right now to characterize a mistake, if one was made, as fraud, is the person trying to save the WPI. And maybe ERV and her ilk. Now all that money that was just raised at Vivant and the WPI annual fund raiser can be spent on lawyers to go after Dr. Mikovits, as they try to continue to lure patients down the yellow brick road. The baby in this divorce? The grants. An institute without a chief scientist and a scientist without a lab.

Seems not very coherent. Anyway, I assume, until the contrary is established, the grant is to the institution, not the person, for a similar reason as it is in Holland: Projects in institutions are funded, rather than the persons leading it, because the leader may die or get an accident, and the point of the funding is to further scientific research rather than scientists. (Sometimes somebody gets a personal subsidy, but that also still tends to be tied to an institution, and if it is dressed up as a personal subsidy, it is of somebody with a special status.)

What's left? A lab running a bunch of tests that I can order from Quest and LabCorp, for which insurance will pay. A CEO who, when I was there, had six people working for her, including a personal assistant, while Dr. Mikovits had two, and then one.

Jamie doesn't like Annette.

A doctor working for himself. An awful lot of empty space. Less than no respect at the medical school. A post doc. A paper which looks like, one way or another, it will be completely discredited soon with everybody calling everybody a liar.

I don't see the need for that. Whether it was an honest mistake or fraud, if that is what it was, most of those who collaborated collaborated in good faith, and not in full possession of all the information.

Some GenBank sequences and related patents, which I know very little about, but which I imagine are enough to muddy the waters for everyone else, and therefore prevent work from seeing the light of day. Why would anyone want to get into this mess now? My fear is that the WPI will try to exist without substance to preserve their intellectual property. At this point, the counter on the top of the side bar is counting more lost time.

Well, she doesn't like the WPI nor Annette Whittemore.

All this in the context of: I still think a gamma retroviral hypothesis is the best one we have.

I don't think so, but then she is taking anti-retrovirals, and this is where 'cognitive dissonance', rightly applied, enters.

         ---------------------------------------------------------

4.6: Tuesday, Oct 4: My correspondent mentions Erv and dr. Mikovits and I reply:

I don't know, and as things are now, the most likely thing to happen is that Judy Mikovits gets the blame and needs to return to work in bars.

Anyway, it seems there is more going on behind the scenes than you or I know.

This is the last mail on Tuesday October 4, on which I publish the Nederlog: me+ME: It's quite a MEss!

         ---------------------------------------------------------

5.1: Wednesday, October 5: In the morning mail I find a reference to an article by Jon Cohen and Martin Enserink in Science published they day before:

Chronic Fatigue Syndrome Researcher Fired Amidst New Controversy

and find on October 5 this in Nature:

Integrity issue follows fired researcher

I also write a Nederlog about a distraught mail by the admirable - some think - prophetess of ME=XMRV Patricia Carter:

me+ME: Patricia Carter explains everything!

and mail some more with my correspondent, but meanwhile I am pretty sickened by most that I have read in this context, for which reason my Nederlog of October 6 is about something else, although it is quite relevant: Martin Gardner video

         ---------------------------------------------------------

6.1: Thursday, Oct 6: But I do write about it in e-mail, and namely about Angela Kennedy, an English ME-advocate (not herself ill, but with an ill daughter), who sometimes writes sensibly about ME and sometimes not, like now, when she is also taken to task by the moderators on Phoenix Rising, whom I shall call Yezhova and Beria, in order to avoid hurting anonymous feelings, which is enormously imporant on the respectful Phoenix Rising site, unless you irritate the moderators, for then your posts will be slashed for unstated reasons by unnamed anyway anonymous persons):

Here is AK today on another thread, to illustrate what I mean:

And from here on I quote Ms. Kennedy indented in blue, and my comments in black.

Incidentally, I should remark that Yezhova & Beria seem to be removing all posts they themselves feel should not be seen by others, so it may well be the following post, like many others, have been removed by these fine anonymous folks of the Phoenix Thought-Police:

http://phoenixrising.me/forums/showthread.php?13991-Mikowitz-accused-of-manipulating-XMRV-paper&p=210548&viewfull=1#post210548

Note the thread is about Mikovits and the original Science paper - and since I've been following the Erv-blog I can say Mikovits and Ruscetti are into heavy problems, according to many of their colleagues, so far as I can see with good factual grounds, though it is also true there is some sick bitching going on there as well.

Anyway, here is our scientific doctor AK today, apparently taking her hint from the imbecile of supposed genius Bob that she quotes in her signature to just the same effect. Hers is indented, my comments are not.

I'd like to contrast the hyperbole and self-righteous outrage about Judy Mikovits' mistake in presenting data with another case of researchers who presented discrepantly, in a published paper.

It's called 'a red herring', 'off topic', 'shifting the subject'. Also, it's begging the question: By now it may well be not a mistake but fraud, or at least conscious misrepresentation of what happened in experiments.

See how no researchers were harmed. See how easy the ride they got:

http://www.bmj.com/content/320/7233/515.2.full

This was unearthed on PR-F: A statistician who showed Wessely, Chalder et al. misrepresented "research" they did statistically - in 1999. W & C got off by saying "mistakes can happen", "gremlins", "data alaaas lost". In fact it probably was either incompetence or fraud, but then again one of the reasons I did not want to be a psychologist is that much of psychological research strikes me that way. (Besides, nearly all reported experiments are on first year students of psychology.)

Now - it is not MY logic that follows that Professors Wessely and Chalder should be accused of scientific misconduct and fraud (not at all! In fact, I'm actually only using this example because it's from the field of research I've been conducting), but it IS the logic of various posters on this forum, Abbie Smith, and all her supporters.

Well, it is my logic too, and what led to many problems already when I was a student, because "scientists" claimed otherwise. ("We all know that truth doesn't exist.") And I have been saying now quite a few times on my site Wessely is a fraud and a sadist. I am not saying AK should repeat that (dangerous and unwise), but that is what I really think and indeed I think I have the knowledge and talents to hold it up in an objective court.

And at the very least, Science and Nature should have been busy reporting this possibly 'egregious' discrepancy, BY THEIR OWN PUBLISHING LOGIC.

No, not at all. AK is here indulging in special pleading: The Mikovits-case is very different: A purported medical breakthrough, with very serious consequences for public health if true, reported prominently in one of the world's leading scientific journals, that is now being - AK's beloved term - 'critiqued' by a great many retrovirologists, for various reasons.

But see how easy and relaxed it all was. Chalder and Wessley got to blame 'gremlins' and the peer reviewers at the BMJ, say they couldn't sort it out now anyway, and the most combative thing Bland said was it should re-presented correctly because otherwise other scientists will be citing something incorrect. Even THAT reasonable request was just not met.

Yes.... but this seems the usual course, more or less, if 'mistakes' are made. In the present case, also - from the previous millenium, to be sure, speaking of herrings gone red - it is far less likely intentional falsification could be proved or made plausible than it seems at the moment in Mikovits' and Ruscetti's case. (That I take it on the moment is mostly about whether they should have reported treating part or all of their experimental samples with some chemical, as Ruscetti admitted yesterday. They didn't report it, and it seems - also to me - they should have, and if they would have, Science probably would not have published their material.)

I'm NOT claiming Chalder and Wessely be accused of scientific misconduct or fraud or 'egregious error' for this, NOT claiming people should be attacking their motives on blogs, calling them obscenities, trying to ruin their careers. NOT claiming this needs to be reported before an investigation could even be begun.

Well... I am claiming this about them, if not necessarily about that piece of false statistics: They simply are scientific frauds and incompetents, but then I am a mere psychologist and philosopher of science, and not a doctor of sociology whose critiqueing tends to uncover that all manner of things are "social constructs", and whose university education seems to have been mostly undiluted pomo, with strong doses of feminist sauce.

BUT NEITHER SHOULD THESE BE DONE TO JUDY MIKOVITS.

What is done to dr. Judy on PR-F is not relevant to what will happen to her. Besides, she was dismissed by the WPI, on grounds that were not declared, and what is declared probably was declared in view of possible litigation. She has agreed that the main piece of evidence in the original science paper, viz. that 67% of ME/CFS patients vs. 4-7% controls had XMRV in the blood, is not real evidence, for she has no reliable assay for finding XMRV in the blood.

So it seems very likely XMRV is a dead alley for research into the cause of or treatments for ME/CFS. It seems well worth it to hammer that home in the minds of "the patient community", especially as so many have been saying or suggesting ME=XMRV, even to the extent of being willing to demonstrate in the streets with Mickey Mouse ears.

Then again, if Mikovits made a mistake or two that led to the paper in Science, I'm sorry for the shit she gets, for she is done as a scientist anyway, and if it is only a mistake she meant well. If she falsified data to get a publication in Science, she deserves a lot of shit. I don't know what's the case, but the crowd at Erv's blog think the latter; most of them know the science; and none of them are afraid of being accused of slander, which anyway is the bogus argument SOC uses to try to shut people up. (It's bogus because the TV in the US is brimful of it, and e.g. Fox News thrives on it. Besides, it is often fair and justified to criticize persons, but then tiny and pomo minds don't like that, is true.)

The PACE trial, of course, needs a full investigation and for complaints to be taken seriously, though not a witch-hunt/kangaroo court to be perpetrated. I note how the outraged Mikovit detractors on this forum (and elsewhere) have stayed quiet on that. They are happy for a witch-hunt /kangaroo court on Mikovits (this campaign has qualities of both) - but they don't even care for legitimate investigation of multiple and potentially extremely serious discrepancies

Again the red herring. Also, there is no witch-hunt/kangaroo court on PR-F, except that AK likes the term. I am missing AK's outrage over A Woman Being Persecuted, though.

Anyway... I suppose AK means well, but she doesn't have a good scientific education, at the very least.

  ---------------------------------------------------------

Thursday, Oct 6: While Ms. Kennedy is busy trying to sell red herrings to the public, the discussion on Erv's blog, that I am following, continues, and my correspondent also follows it, so we discuss it, in the course of which I wrote:

Erv has been mentioned now in this connection in "Nature" and in "Science", and clearly her blog is the place retrovirologists discuss the science of Mikovits and Ruscetti. Also, she announced an experiment yesterday, related to the problematic picture, I presume seeing what would happen if she tweaked things as Ruscetti admitted doing.

One good guess is that some editor of Science mailed her. I would suppose the editors of Science now believe it was a fraud; they feel they have been used; and they want to hit back - and don't want Mikovits and Ruscetti (removed from the WPI's opening page, where there was a photograph of them) to get clues.

Another point - as Gerwyn Morris, Angela Kennedy and V99 also noticed, it seems - is that the notebooks and cell-cultures of Mikovits are now accessible to Whittemore and others, and not to Mikovits.

My correspondent quotes Erv from her blog:

To those of you waiting for an update--
Ive decided against posting any more about the science of this particular incident until it is resolved (though I will be talking about the politics). I know Judy reads this blog, and she has recently said some things that make me think she is taking cues from what she reads here. Not from me. From you all.

Maybe not, but I am unwilling to allow my commentors to be used to fashion make-shift life-rafts for anyone.

I write about this to my correspondent:

Well... it's on line. Also, she and others, such as ghholm, who is not an alias, are pretty confident they are right, which they can't really afford in the US claim culture if they are not. (It's odd the scientific wizards on PR-F don't pick this up - but perhaps it is brain fog or anyway a low intelligence, even on a bright day, when the wind is westerly.)

It would be a bummer and a scandal if it is fraudulent, but it may well be. Besides, my guess is Annette Whittemore probably also knows more than she lets on, viz. at least that Mikovits can't answer a number of questions.

In any case, if they are right on Erv's blog about the slides, Mikovits and Ruscetti falsified experimental data, at least in the sense that they did not give the full information about an experiment.

If they did, and there is something like a plausible or real proof, there will be howling in "Our Community". Mind you, if things were falsified or tweaked it still may be "honest" in a sense: They convinced themselves their theory must be right, given Silverman's (now withdrawn) findings, and that patients interests merited it, and that they would get away with it because they were right, and that they really had found something (now said to be contamination).

But if so, it remains falsified science, and if it can be proved, if only in a legal sense, Mikovits and Ruscetti, at least, will be in major trouble, because the BWG and the NIH spent a couple of millions on their ideas.

Anyway... I am not very well, and I am sick of the baloney on PR-F, though it is interesting in the context of "Cults of Unreason" of which I forgot the author but which is instructive about them, and "Fads and fallacies in the name of science" by Martin Gardner, about whom there is a nice program (45 min):

http://www.youtube.com/watch?v=R_YPQpf9Cok

It's mostly about Gardner, with quite a lot of very capable mathematicians and magicians.

   ---------------------------------------------------------

Thursday, Oct 6: Meanwhile on PR-F an interesting and well-written post appeared, and I report it to my correspondent:

This just appeared on PR-F and explains clearly what I had meanwhile picked up from Erv's blog:

http://forums.phoenixrising.me/
showthread.php?14060-Why-does-5AZA-matter

   ---------------------------------------------------------

7.1:   My correspondent and I discuss Erv's blog, of which I indent the quotes, which I also make blue, with my own e-mail texts in black - and please note that most that is quoted is from a Q&A-session by Mrs. Whittemore:

I indent the originals, and comment some unindented:

740. (...) I see Annette is taking questions on Facebook. Last I looked it wasn't going well. About time the federal agencies got involved with it if you ask me - but there we go...

This may well happen, indeed, if there gets anything like a prima facie case for fraud, I suppose, in view of the money spent by the US government.

'Although human gamma retroviral studies have presented many complicated challenges, we feel it is important to continue this line of research for now.'

Well... I am interested in the Lipkin-study, but the problem as it stands is that there is no reason to believe there is any special correlation between XMRV, HGRV, MLV and ME/CFS, because Mikovits has admitted there is no reliable test. So the status of the HGRV-hypothesis is pretty metaphysical: No empirical test; no empirical reason it may be causal except on very general principles; probably no chance for funding for research into HGRV... 

And this is all completely apart from all criticism of the Science paper of the last days, and what is in PR-F by Ecoclimber who suggested but did not clearly state Coffin will block all funding for such research, apparently because he had a bellyfull of V99-mails or RivkaRivka mails, or whatever. (This would irritate me too, and considerably as well, but he must be smart enough to handle a spam-filter.)

'Many of you have questions regarding the blood working group. The purpose of this phase of the BWG study was to determine if current assays could reproducibly detect XMRV/MLV in blood samples.

"They concluded that these results indicate that current assays do not reproducibly detect XMRV/MLV in blood samples and that blood donor screening is not warranted."

It is important to note that the results reported in the blood working were not based on the testing methods that are used in the clinical laboratory.'

WTF?!

I suppose only the "WTF?" is by the poster. It seems justified to me, for things like these have only been said very recently: If that is so, they should have said so.

741. Continued:

'regarding the Lipkin study: We're currently in discussions with Dr. Lipkin and our team of researchers to determine the best way to move forward.'

I bet you are...

Well, that is plausible, since Lipkin's design of his study probably presumed Mikovits and Ruscetti and the rest of the team(s) would be available to do his blinded test-run.

I wouldn't be amazed if Lipkin now says: Sorry, can't do - I settle for the BWG-results, at least for the time being.

'Regarding XMRV testing at VIP Dx. All tests offered by VIP Dx laboratory are clinically validated. '

That doesn't really say anything. My own problem is that these tests were at least derived from the tests of Mikovits and Ruscetti, if hoax-free, and that test, Mikovits, Ruscetti and the BWG agreed, doesn't work.

'We have offered Judy access to any necessary materials she needs to answer the concerns of the journal Science. WPI is not in possession of Judy's notebooks.'

Interesting. I'd guess some virologists will not like this, since - as far as I know - in physical and chemical labs the lab-books must remain in the lab. But it is not precisely worded, and some other kind of notebooks may be meant.

'We're sorry if Judy offered to include you in studies which are already full. However, we'll make announcements on the WPI website when new studies are open for enrollment.' 

Hmm. The question is: What can they study if the HGRV-hypothesis can't be tested, as is the case now, or so it would seem from the BWG-results?

'The cirumstances regarding the cell lines that were sent to Dr. Lombardi have been misreprensented by Judy. These cell lines were ordered for Dr. Lombardi's research and had nothing to do with the institute's RO1.'

That's what was the ostensible reason for her dismissal.

Anyway... not very informative.

   ---------------------------------------------------------

3. Saturday, Oct 8: I could have quoted more mails I wrote, but won't and arrive at today:

What I realized a week ago is that tomorrow it's two years ago that I heard and wrote about it, in Dutch. It may come up today, as it is that late.

Dramatic WPI Announcement Imminent


Just a heads up. The CFIDS Association is reporting dramatic news is imminent from the WPI. Reportedly a paper on ME/CFS is going to be published in the Journal Science. Science is not your ordinary scientific journal; it publishes on a variety of scientific topics and it's an extremely important journal and reaches a huge audience. Just the fact that the a paper on chronic fatigue syndrome is being published in Science is a big deal.

Apparently we should know more by Friday.

_________________________________________

(I discuss this some and write about the reactions to the latest news and in general to my correspondent:)

People - many, most, all sometimes - are stupid. But indeed this is typically how ordinary people reason: By what they take to be implications of something, they usually lack the knowledge to judge well, and without being able to reason rationally in terms of evidence, probabilities and statistics. Wishful thinking and wishfully blind to evidence if it doesn't confirm their p.o.v. Also in real fact, all the Science paper offered was a possible cause suggested by a significant correlation, and it never got beyond that.

I am afraid the problem is the average stupidity and ignorance, that joined forces with or got multiplied by anonymity and badly led forums. 

Finally, a sum-up by me in mail of the Whittemore's position and the general lesson of two years of XMRV today, as I write:

I suppose most of the Science and Nature stuff of the last week was quite unexpected by the Whittemores, and I don't suppose they were in it for the money, in the first place, though they had to make it to function well. Also, the tests were experimental, or at least that is what a rational person must have thought, so people taking them were taking several risks, and could have known so.

Then again, WPI ought to take trouble to straighten things out as best as they can, but there may be started all manner of legal business that may make Harvey the lawyer conclude it is better to shut it all down.

Well... two years of XMRV and poof went many illusions. Then again, if rational people like ourselves - I say it unblushingly - could reason out what were the rational probabilities, so could the others. In principle, but didn't, for the most part.

There's a Dutch proverb that applies: "If you go sit on a hot stove, you'll have to sit on the blisters".

   ---------------------------------------------------------


P.S. Corrections, if any are necessary, have to be made later.
-- Oct 9, 2011: Corrected a minor indentation error and added spme links and italics.

 


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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