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>>>>> Help ME Circle <<<<
>>>> 26 June 2011 <<<<
Editorship :
j.van.roijen@chello.nl
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A participant of the meeting below and member of
Help ME Circle, became furious after reading the
denigrating impertinences by Prof. Simon Wessely in
the article *Dangers of research into chronic fatigue
syndrome* by the freelance journalist Nigel Hawkes.
(reference: *Wessely & White: Weeping Bitterly* Help
ME Circle, 24 June 2011 - BMJ 2011;342:d3780)
He specially quoted S.W:
*Theyre damaged and disturbed, with an obsession
about psychiatry. With these people, it isnt that they
dont want to get better but if the price is
recognising the psychiatric basis of the condition,
theyd rather not get better.*
He was not sure if the text is confidential, so wants
to stay anonymous, but he could not resist to inform
the sufferers of the unbearable disease ME/CFS about
the exiting report below, from the conference on
XMRV in Reno - 24/06/11 (?)
Because of the weekend I couldn't reach him, but if I
understood him well, I suppose (but not quite sure),
that the text is written by Dr. Paul Cheney.
~jan van roijen
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'I and a few other colleagues just completed a large
conference call with NIH officials and many interested
parties regarding the proposed *Lipkin* study which is
poised to soon be launched.
Results are expected by early next year or sooner on
150 CFS cases and 150 matched controls from six
centers familiar with CFS (Stanford U., Harvard U.,
U. Miami, NYC, Incline Village and Salt Lake City).
These cases are from three academic centers and
three private practices who see CFS cases.
The study, independently agreed upon by three XMRV
investigators (WPI-Mikovits, FDA-Lo/Alter and
CDC-Switzer), and overseen by Ian Lipkin himself at
the NIH will resolve the current disagreements on:
a) the existence of detectable XMRV/MLV in CFS
and
b) the association of XMRV/MLV with CFS.
After listening to about 20 key players on three
continents as well as Lipkin himself who appears very
non-partisan, there is no doubt in my mind what this
study will show with the full backing of the NIH in its
outcome and conclusions.
The good thing will be that all reagents will be
certified as contaminant free.
All samples will be collected the same way and
cases/controls assessed the same way.
In the analysis, though different labs will do *their
thing*, they are allowed the methods they choose.
If a sample is positive from any of the three, it will be
counted positive and if any sample is negative from all
three, it will be counted as negative.
If one sample is positive from one site and negative
from the other two, it will be deemed positive for
purposes of the study conclusions.
Judy Mikovits will employ four different assays
(culture, PCR, western blot with sequencing and
serology) while Alter/Lo will employ PCR on plasma and
Switzer will use PCR on extracted DNA as sole tests.
May the games begin and the best man or woman
win.
If Judy Mikovits can, in a blinded fashion, come to the
same conclusions she arrived at before in the Science
paper, the sky will fall in on all other naysayers and
reputations and egos will suffer great humiliation.
I am confident she will do well and so is she.
If not, the patients are no worse off than before and
this disease will remain the enigma it has always been
to those who treat it and those who live it.
However, I would not want to be Switzer or the CDC
or Jay Levy or Singh or John Coffin or the Science
editors or most of the UK medical establishment right
now.
The odds are not in their favor but we will see. I think
they are all on the Titanic after what I heard today.'
