Dr. Bell -Speed XMRV ME/CFS Research

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Dr. Bell States It's Urgent to Speed XMRV

Research Given Stifling Interests, Issues Personal

Appeal for Contributions to WPI

May 2, 2010

Dr. Bell has issued the following open

appeal, fearing that " the current political

and scientific organizations who do not

want to see retroviral involvement will

attempt to stifle studies on XMRV in CFS, "

while " Huge amounts of money are spent

on studies on cognitive therapy… "

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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- 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 behavioral

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. 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

Ostler's Web by Hillary . 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 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

publicly 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

heterogeneous).

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 outs 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. Lets 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 Institute, 6600 N. Wingfield

Parkway, Sparks, NV 89436.

Thank you.

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