David S. Bell MD, FAAP
Lyndonville, NY 14098
May 1, 2010
To my friends with ME/CFS,
I would like to put out a personal appeal for funds to be sent to the
Whittemore-Peterson Institute (WPI) in order to speed up the progress of the
current research. Here is my reading of a very complex situation.
Medical authorities, educational institutions, governmental agencies, and
most practicing physicians have disrespected and minimized CFS in just about
every way possible, from creating an insulting name for the illness to advising
extreme caution in treatment, except cognitive behavioural treatments.
It is easy to dismiss my remarks to follow by saying that I am biased. And it is
true, I am very biased and for twenty-five years I have quietly sat on the
sidelines believing that science will win out and true progress will be made. I
am beginning to think this has been a great mistake. The profession I love has
failed miserably.
In 1985 an outbreak of CFS hit Lyndonville NY and affected 210 persons, 60 of
whom were children. The official response from the CDC and the New York Health
Department was that this was mass hysteria. No one talked with a single patient.
In 1990 I worked with Dr. Elaine DeFreitas and Dr. Paul Cheney and a retrovirus
was found and the material published(1). A second paper
had been accepted by PNAS and contained a photograph of C-type retroviral
particles from a tissue culture of spinal fluid of one of the children in the
Lyndonville outbreak. This paper was suddenly pulled and not published after a
couple of flawed negative papers. A complete description of these troubled times
is in Osler'sWeb by Hilary Johnson. The funding for our studies was pulled and
all work on this abruptly stopped.
I think the same tactics are being employed to hamper the current work on
XMRV by the WPI. The WPI is a private organization and, as I understand it, no
federal grants or funding has been forthcoming. There have been three negative
PCR-only studies, which have established only that CFS cannot to be
superficially studied. At this time no study that has attempted to replicate the
WPI study has been heard from. Many CFS research organizations have declared
publically that "XMRV is a dead issue."
Nothing is farther from the truth. I cannot predict the future, but my fear
is that the current political and scientific organizations who do not want to
see retroviral involvement will attempt to stifle studies on XMRV in CFS. Huge
amounts of money are spent on studies on cognitive therapy, and studies proving
that CFS is heterogeneous (you can argue that polio is heterogenous).
We have not heard from the CDC, other than the inappropriate comment that this
was not likely to turn out to be anything, made right after the Science paper
publication in October 2009. We are now eight months later and not a peep. Maybe
they are finding XMRV and want to be very careful. Maybe they haven’t looked and
are assuming that this heretical idea will blow away. Eight months? And the Band
Played On.
It is possible that thirty other labs are finding XMRV in CFS or that no one
else in the world is even looking for it. Science requires that labs do not
disclose their findings prior to publication and I agree with this rule. But is
the WPI going to be isolated by the scientific community and wither away because
of lack of funding? Is XMRV going to become more of the compost of CFS research?
But there is an alternative. We cannot wait ten years for science to grind out
its conclusions. Every person in the world who believes that CFS is important
should send $10 to the WPI. I plan to send $10 today. It may not be much, but it
is a start. There may be 10 million persons in the world with CFS. Let's see,
that’s…I need a calculator. May 12 is our day. Let's do this.
After 25 years of work in this field I do not have much. But I have my
integrity. I feel that WPI has made an important discovery and I feel they are
an ethical organization, they are not padding their pockets. But I also have my
fears. And the greatest fear of all is that their discovery may not be
appropriately followed up.
For the 9,999,999 other people out there who think CFS is both real and
important, send $10 to: Whittemore Peterson Institute, 6600 N. Wingfield
Parkway, Sparks, NV 89436.
Thank you.
David S. Bell MD, FAAP
1. DeFreitas E, Hilliard B, Cheney P, Bell D, Kiggundu E,
Sankey D, et al. Retroviral sequences related to T-lymphotropic virus type II in
patients with chronic fatigue immune dysfunction syndrome. Proc Natl Acad Sci.
1991;88:2922-6.
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