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Plea from Dr Bell to donate to the WPI

Discussion in 'Action Alerts and Advocacy' started by fred, May 2, 2010.

  1. fred

    fred The game is afoot

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    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 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 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 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 stiffle 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 havent 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, thatsI 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.
  2. serenity

    serenity Senior Member

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    Austin
    bravo, i have sent my donation
  3. dancer

    dancer Senior Member

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    Midwest, USA
    Me, too. And I chatted with two friends this week who wanted to understand ME/CFS better...and after we talked, they were shocked about how rough this illness is, and how terribly unfair the NIH funding has been, and they said, "Is there some place we can donate?" and I told them about WPI.
  4. shrewsbury

    shrewsbury member

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    Hi fred - thanks for posting this. Where did you find it? Do you have a link for it?

    thx sb
  5. JAS

    JAS

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    UK
    Thanks Fred...done :)
  6. Kati

    Kati Patient in training

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    20$ to the nice people at WPI.
  7. fred

    fred The game is afoot

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  8. KnightofZERO

    KnightofZERO

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    People should listen to Dr. Bell, --if they don't listen to him who will they listen to? Like Peterson he has been a true hero for us and a voice of "reason" for the longest time. I believe in David Bell. :D

    --donation time for me too.
  9. ixchelkali

    ixchelkali Senior Member

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    I love that man. He's my hero.
  10. Robin

    Robin Guest

    Poor Dr. Bell. Harvard educated and quietly practicing out in the country, and out of nowhere his patients turn up this weird disease. Like Peterson and Cheney he makes a good faith effort to find out what's wrong and gets told off 500 ways. Years pass, he retires, people are still getting sick, and there's no treatment and less federal money for research every year.

    The XMRV stuff comes up and seems to fit, and he's watching the political BS start up all over again!

    That's a pretty strong statement coming from him! He's so conservative.
  11. srmny

    srmny

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    I sent a donation to the WPI last month. But I am going to set up an online auto payment for $10 monthly to the WPI. I spend much more than that on my supplements and the WPI research is part of my health care expense. Many of us can scrape together $10 each month and there are 1,792 registered members of this forum! We could generate thousands of dollars each month. Of course, we will all forget (short term memory) but auto payments should do the trick. If we don't start funding our researchers we are never going to get well. I have watched the CDC do NOTHING but try to prove I am crazy for more than 15 years and I am angry at them and angry at myself for thinking they would ever change. THE CDC IS NEVER GOING TO HELP US! HELP US HELP OURSELVES - DONATE TO THE WPI TODAY!
  12. Jerry S

    Jerry S Senior Member

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    Great idea! I doing $10 per month also. It all adds up.

    Thanks for posting this, Fred. Very moving letter.
  13. fred

    fred The game is afoot

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  14. oerganix

    oerganix Senior Member

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    Two ways to donate to WPI; give now and give often

    1) URL for a PayPal donation to WPI:
    http://www.wpinstitute.org/help/help_donation.html

    2) If $10/mo is too much, how about $5/mo, as regular as clockwork.

    3) http://www.igive.com/ is a site that gives a small amount to whomever you designate each time you use their search engine, or buy something online from one of their sponsors.
  15. JillBohr

    JillBohr Senior Member

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    Columbus, OH
    I sent in $20.02 this am.
  16. Robyn

    Robyn *****

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    If 1000 people send that's $50.00 that's $50,000.00
  17. KnightofZERO

    KnightofZERO

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    Dr. Bell has been undoubtedly a seminal researcher in the field of ME/CFS and a person who went above and beyond... Maybe someone can post his message in blog so it can be on the main-page of phoenixcfs.org?

    A strong statement from him about the research situation has as much, or more, merit, than whatever else could be posted there atm.
  18. shiso

    shiso Senior Member

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    Thanks Fred for posting the message and oerganix for the URL. Sometimes it just takes a prod and easy directions at the right moment!

    S.
  19. oerganix

    oerganix Senior Member

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    Welcome. And thanks to Fred.

    I'd been meaning to donate and just procrastinated until I forgot...like a lot of other things. Now I've done it and I plan to do it again next month.
    Fred, I'd like to see this as a sticky, so it will be at the top of the page next month.
  20. KC22

    KC22 Senior Member

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    Ohio
    I just sent mine last week. I am going to try to do a monthly donation, too. Thank you, Dr. Bell!!!

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