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CFS Patient Advocate
Monday, December 20, 2010
The Mouse that Roared*
Many of the participants of the Blood Study group
advisory committee meandered off to have a little
dinner and feel good about themselves.
Their self-assessment mirrors a comment overheard
recently in a NYC coffee shop: "I feel good about
myself and I think I do a good job." The rest of us go
back to our life of illness or illness support. It is a
grim life, made more difficult by having to go back to
confront illness reality after a day with these FDA
It is this disconnect that is really irritating - the
disrespect for this illness that individuals like Coffin
and Stoye display publicly.
They are playing their little games, disguised as
science - and their successes in their careers come at
the expense of patients. They do not give a shit.
This is what I dislike. It is the contempt and the
disregard and the ignorance of the consequences of
their actions. It is in this way that they are modern
people - self-pleasurers.
On this December 20th, a story from November 2009
has taken center stage and has become a
A year ago a well-known cancer virologist was approached in the halls of the NCI by another virologist and advised to "distance himself from the WPI" - that "they (unknown elements) were going to take out the WPI". Today this story resounds more convincingly - and gives some credibility to the lies that have been circulating over the last few months.
The news today was not good for ME/CFS patients -
not good for their health. For the moment the largest
exposure (what is most suspicious) of these "smoke
'em out" retro-virology papers is the timing.
These scientists chose to have their XMRV
contamination studies released five days before
Christmas, a time when ME/CFS patients are under
the greatest stress of the year.
ME/CFS or XMRV-related illness is a stress-related
disorder of the first magnitude, and many patients,
like my daughter, go down for the count during this
time, and take weeks to recover.
It is a very sad and painful time for ME/CFS families
and friends. ME/CFS is a very nasty illness with a
great fragility and unpredictability to it.
These virologists, in their little ivory towers, can only
think of these patients, as "complainers", resenting
the "harassment" email activity of these desperate
patients, now desperate for twenty-five years and
It was quite noticeable in the conversation with Dr.
Stoye the other afternoon that he has zero idea of
the outlines or the seriousness of this illness - and
no desire to find out, preferring to splutter and
grimace instead. (Can one imagine that being true
with Salk and polio patients?)
Complete disregard can also be placed at the feet
of the stuff shirt Dr. Coffin and the haughty and
diffident Dr. Huber, neither of whom show the
slightest knowledge or interest in the reality or
character of this patient group.
They are too busy talking about themselves,
preening and mincing about.
In the unlikely event that these studies knock out
the association with XMRV, we have a larger moral
issues here - a moral issue parading in the name of
These scientists in their "need to know" and "to win"
are perfectly happy, in their deep ignorance, to
trample on the feelings and spirit of this patient
group. At the very core, they are an unfeeling,
heartless bunch of bastards. Is this what science has
This disregard is only the most obvious example of
the evil that is taking place now. It was obvious at
the Blood Study Group Advisory meeting that there
are larger, even unknown, issues here that various
sides are contesting furiously - with the gloves off.
At times it is difficult to determine if this is normal
academic infighting, where scientists fight to the
death over limited or non-existent stakes.
Or whether, on the other hand, there are much larger
issues here - issues of proprietary rights, influence,
credit, power and, of course, MONEY.
For a long time now it has seemed that an aggregate
grinding sound of anxiety and exacerbation has filled
the hallways of university labs in the US and the UK
over the WPI discovery. This has been written about
before on this blog. Now comes the serious push to
It is not believable for one minute that Coffin or
Stoye or Huber or any of them believe that there is
not a retrovirus associated with this illness.
They want part of the action and they need to knock
down the WPI and Mikovits to get it. Scientific rigor
is necessary, but these three do not qualify for this -
and engineered studies do not count.
These, and others, ask "questions with intent" -
fueled by jealousy and malice. When one
experiences an exchange like the one with Stoye you
know something unspoken is at stake. Some of this
This effort to discredit has been going on since
October 2009 - and probably before. (Early on,
unnamed others (so-called friends), coveted Dr.
Mikovits job and tried to unseat her. Who knows
what else happened to sandbag the WPI- things like
researchers stealing proprietary data and publishing
it as their own - these kinds of disturbing actions.)
The first manifestation of "difference" - in hastily
organized papers in the late winter of 2010 - was to
knock out the Science paper.
A number of people went down for the count in this
exchange, including our friend Jonathan Kerr. These
highly publicized negative worthless papers were
dragged out over the summer.
Finally the Lo/Alter paper was released and at this
point things began to get serious. (Dr. Alter seems
to have unwittingly participated in this plot to
dismantle the October study.) In other words the
stakes were raised and the bitter lines consolidated.
Something big is at stake here and the struggle for
control is not a friendly one. The opponents of the
association of MLV-related viruses are intent on
doing one of two things.
The first possibility is to completely knock out and
bury the association that a retrovirus could be
attached to this illness and other unknown
The second is that they want to blunt the XMRV
connection, bury it, and wrest control of the entire
issue for themselves.
From a scientific point of view the first option
doesn't make a whole lot of sense. The ferocity of
the fighting indicates that the second possibility is
Large powerful elements want to wrestle this
retroviral connection to neuro-immune and other
illness from the WPI and their collaborators.
The negative consequence of this for the patients of
ME/CFS is not calculated in their bargains.
For the last few months, and longer, every step has
been taken to isolate the WPI and starve them to
death. All funding requests have been turned down
based on the idea that the XMRV association is
experimental. (Unfunded studies have to be
completed to apply for funded studies.)
The release of these papers and its immediate
uptake by the UK and soon the US press (think of our
vaunted NY Times and of these "riled up" CFS
people) indicates that the time was calculated for
greatest exposure and to neutralize the level of the
It was a good trick and one has to admire it for its
connivance/deviance. These contamination studies
made it very quickly into the major news media,
especially in the UK.
Someone was waiting for them - it was a set up.
Expect more of the same to follow from the US
press. This makes for a good story, the continued
abuse of this patient population, now in the name of
science. This was the hard take-out that has been
expected for some time now. This is just another
The WPI has always been weak on the
communications/public relations front. They are
understaffed and poorly funded, particularly after
opening their marvelous new building - an act that
only further needled their enemies.
At the moment the WPI is unprepared to strike back
on this recent take-out, but things are going to
change. As they gather forces and consolidate the
means of aggressively pushing their agenda, the roll
back will happen.
Let us imagine for a moment that the worst has
occurred (the doomsday scenario) - that the XMRV
association with ME/CFS has been broken and
smashed. Let us imagine the unimaginable, that the
UK whatshername and Coffin and Stoye have bested
the valiant Dr. Mikovits. Is this the end?
We have to remember that it was the WPI that got
us here. With all due respect for Klimas and
Natelson and others, the WPI has gone farther and
faster in their research - and without much
institutional research money.
Try to remember what it was like before the Reno
conference in March 2009. At this point, a direction
was set - entirely by the WPI and their then Medical
Director Dan Peterson, and it has been a fast ride
Can anyone imagine that this will change? The XMRV
was an unexpected gift - and it is a gift that is going
to keep on giving. If it hadn't been for the October
2009 paper none of this additional broad-based
research - Singh, Hansen, Bell, Cheney, Klimas,
Montoya, de Meirleir - would have occurred.
Whatever else happens the Whittemore Peterson
Institute got the ball rolling, and now it is
impossible to put the genii back in the bottle. As the
changed Dr. Alter said, if it is not XMRV, we have to
find what it is. And then there are all the immune
panels and cytokine studies. Soon it will be on to
One thing is assured. This struggle will continue –
and please imagine the bad guys losing. Think of
what it would really be like if the ME/CFS community
had to rely on these suckers – Coffin, Stoye, Huber,
whatshername – to do anything for us. We would be
Word comes late in the day of a comment
on these five studies from the
researcher/clinician Dr. Kenny de Meirleir
(published on Merutt.wordpress):
"The contamination by mouse material was excluded
in our study, that of Lo and that of Lombardi et al.
We are not using PCR as a basis of the test but
human prostate cancer cells that do not express
RNase L so the virus from patient's blood can grow
We also sequence the virus and I can assure you it
is not mouse material.
Governments and insurance companies are horrified
by the idea that there is a new retrovirus out there
that has infected 10 times more people than HIV up
My preliminary data show that the virus does not
grow in culture anymore after Nexavir + GcMAF
although the procedure was identical to the
In the next months more will come from our side. A
study with healthy blood donors, ME patients who
got ill immediately after blood transfusion and ME
patients who gave blood after they got ill will be
published in the first half of 2011.
What these 5 are doing to the patients is a crime
Kenny De Meirleir"
* The Mouse that Roared - 1957 UK film starring
Peter Sellers, where an impoverished backward
nation declares a war on the USA hoping to lose, but
things don't go according to plan.