Urgent Appeal from Dr. Bell to save XMRV research

Discussion in 'Fibromyalgia Main Forum' started by Andrew111, May 3, 2010.

  1. Andrew111

    Andrew111 Member

    From http://www.prohealth.com/library/showarticle.cfm?libid=15320

    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 Ostler's Web 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 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 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;88:2922-61991;88:2922-6[This Message was Edited on 05/03/2010]
  2. elliespad

    elliespad Member

    Thank you Andrew. Thank you Dr. Bell. I just sent my donation. Was easy. I used my credit card/debit card. Is also set up to accept PayPal or to send a check.

    If we want ANSWERS, if we want TREATMENT, we have to do our part by donating anything we can. May 12 International ME/CFS & FM Awareness Day. Let's ALL send SOMETHING!
    Here is the link:

  3. spacee

    spacee Member

    Will give more in am.

    Thanks for this info.

  4. Andrew111

    Andrew111 Member

    I donated $300. That's a drop in the bucket compared to how much I've spent on useless doctor appointments.
  5. kch64

    kch64 New Member

    I've donated $100.00 on paypal. Keep up the good fight. We need it.

  6. aftermath

    aftermath New Member


    Truly well said.

    Like you, I have spent tons of money on MD visits (I've seen pretty much all of the big names) and gotten NOWHERE with treatment.

    The bottom line is that right now, this is a REAL illness with an UNKNOWN CAUSE. Until a cause is discovered, the idea of treatment (besides symptom mitigation) is pretty much a joke.

    We've all been following these boards for years. People describe countless visits with Dr. XXX. How many people report even a 50% sustained improvement? That's right, next to none.

    As hard as the docs are trying, they have no clue with this issue.

    I'm not spending any more money on Dr. visits until someone knows something--and it's likely that someone will be the WPI.

    Instead of spending cash on Dr. visits, or questionable supplements, we should be sending it to WPI. I sent $100 last fall, will be sending more soon.

    It really is the only hope right now.
  7. KnightofZero

    KnightofZero New Member

    Thanks for this post Andrew, it really should be bumped to the top and stickied. Dr. Bell has generally been rather conservative, though very involved, in terms of advocacy. The fact that he is so distinguished in this field and his historically upbeat view that "Science will win out" makes this all the more consequential.

    We are fighting a huge amount of institutional inertia, from all of our government agencies, when it comes to ME/CFS, if we don't make things happen chances are they shall not.

    Oh and I donated too, not a lot but a little and every little bit helps.
  8. QuayMan

    QuayMan Member

  9. QuayMan

    QuayMan Member

    Thanks to everyone who donated - there might be anonymous people/people who haven't said they donated on this thread also.

    Over on another forum http://www.forums.aboutmecfs.org/showthread.php?4715-Plea-from-Dr-Bell-to-donate-to-the-WPI :

    $3,012.00 Total In One Time Donations!
    $270.00 Total In Recurring Monthly Donations!
  10. QuayMan

    QuayMan Member

  11. QuayMan

    QuayMan Member

  12. Andrew111

    Andrew111 Member

    Anyone from here who donates, please post what you gave. It doesn't matter how little it is. It all adds up. Also, posting how much you gave it adds to the spirit of the thread and bumps it to the front page.
  13. QuayMan

    QuayMan Member

  14. Andrew111

    Andrew111 Member

    >It really is the only hope right now

    Hey Aftermath. Good to see you again. I agree. There is no other entity that is researching CFS in a comprehensive way. And from what I've seen, they are looking at more than XMRV. They are looking at the entire illness process and moving full speed ahead. This never happened before WPI. And if they go down, it might never happen again. Plus, they are paying attention to related illnesses like fibro.

    BTW Aftermath, did you notice you are being paged. See the message with your username on it.
  15. joanierav

    joanierav Member

    hi andrew, i just donated $10.00. its all i could afford at the moment. but if everyone joins in , it will make a monumental difference . that is key , we must all join in. thanks , joanierav
  16. stschn

    stschn New Member

    Money's tight but I will send it every month and that will add up!
  17. stschn

    stschn New Member

  18. Andrew111

    Andrew111 Member

    Yes, it all adds up. I don't know what the statistics are for CFS, but let's say it's 3 million world-wide. Everyone giving $10 would be $30 million. If this were monthly it would be $360 million a year. Of course, we realize that would be hard to attain. But every bit helps.
  19. LonelyHearts

    LonelyHearts New Member

  20. LonelyHearts

    LonelyHearts New Member