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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!
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".
---------------------------------------------------------
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