XMRV Deja Vu: Dr. Bell's Appeal to Fund WPI Is Still Pertinent, 8 Months Later

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On May 1st, 2010, Dr. David Bell issued a call to patients and those who care about them to donate to WPI. His assessment of the situation was right on target then and it still is.

WPI's youtube videos: one has Dr. Deckoff-Jones speaking
                                                                              

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
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. 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 Hillary 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 can not 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 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. Lets 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.

                                                                     

Two Physicians Try Antiretroviral Drugs For ME/CFS

ME/CFS is a crippling neuroimmune disease that has ruined the lives of at least a million Americans.

After 20 years of searching for treatment, the parents of Andrea Whittemore, who has had it since she was 12, funded research into the illness. They started WPI, the Whittemore Peterson Institute.

This resulted in the finding in 2009 of a new retrovirus, tentatively named XMRV, in most ME/CFS patients. In 2010 virologists at the FDA, NIH and Harvard published a study supporting the 2009 findings of WPI.

Subsequently, Dr. Ila Singh researched whether any of the drugs developed for the well known retrovirus, HIV, might be effective against the new virus. She found 3 FDA approved drugs that were effective against XMRV in the lab: AZT, Viread and Insentress.

Patients and the doctors who treat them have suspected a virus or retrovirus was the culprit, all or in part, since AIDS-like lesions were found in brains scans of ME/CFS patients in the 1980’s. The relapsing-remitting pattern of the illness also mimics viral illnesses such as malaria or herpes. The profound, disabling exhaustion is reminiscent of infection with Epstein Barr virus. The flu-like symptoms many experienced at onset also infer a viral infection.

Not surprisingly, doctors may also get this disease.

Two who did get it, Dr. Jamie Deckoff-Jones and Dr. Michael Snyderman, in consultation with their own physicians, decided to try the treatments found by Dr. Singh to be effective against XMRV in the lab.

Dr. Snyderman is an oncologist, a cancer specialist, who himself developed a rare cancer that is not that uncommon in CFS patients. He started treatment with AZT and Isentress at HIV doses. He reported that he felt 25% better after 3 weeks. In the 6th month of treatment he added Viread, also at the HIV dosage. At a medical conference he presented a poster detailing his tests, treatment and outcome.

Thanks to Mindy Ketei at http://www.cfscentral.com/2010/10/dr-michael-snydermans-md-anderson.html for that link.

His poster indicates that he no longer tests positive for the XMRV retrovirus and the markers for his cancer have been reduced.

Dr. Deckoff-James was an emergency room surgeon before she became too disabled to work. Last March she began treatment with AZT and soon added Isentress. She and her daughter, who is also disabled with ME/CFS, have blogged about their experiences with the treatment. They added Viread in May. They have shared their ups and downs with their blog readers through the months of overall improvement.

Dr. Deckoff-Jones has said she has improved from approximately 50% functioning to about 80% in the 9 months they have been on these ARV drugs. This has allowed her to go back to work part time. She will be working with Dr. Judy Mikovits, one of the discoverers of XMRV, on a project to educate physicians on how to treat ME/CFS patients who have tested positive for the retrovirus.

Dr. Deckoff-Jones recently overdid it and experienced a "crash" - post-exertional malaise (PEM). She also regrets ever trying to calculate her progress using the KPS (Karnofsky Performance Scale) to estimate her level of functioning. Like many others with CFS, she has found it doesn't do justice to the differences between physical functioning and mental functioning. Many of the details simply do not correlate well to the kind of disabilities CFS patients experience.

Dr. Mikovits is scheduled to report on similar ARV drug treatments by other physicians on January 17, 2011. In a sneak peak at some information that will be shared in Santa Rosa CA on that date. Dr. Timothy Luckett, blogging about ME/CFS, says that "all CFS patients showed remarkable improvements after receiving antiretrovirals - the group that received Viread and Isentress faired out best."

Unfortunately for most ME/CFS patients, these drugs are too expensive. The CDC has declared all tests and treatments for CFS to be "experimental". That means that no insurance program, including Medicare, will pay for them. At a cost of $1200-1500/month plus the costs of seeing a physician who will prescribe them and the monitoring that must be done while taking them, this treatment is out of reach of most ME/CFS patients.

Cartoons by T. McCracken