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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. Frickly

    Frickly Senior Member

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    In response to my email and facebook post...my mother in law just put a check in the mail for WPI and my sister is giving a monthly donation through xmrv global action cause. I am going to have to call my dad and tell him how much to write the check for and where to send it. :) To be continued.....:) Personally.....I beleive WPI need funds more than any other organization out there right now. That is were my money is going. We have more than doubled our total donations for WPI through xmrv global action cause since posting Dr. Bell's letter.
  2. jimbob

    jimbob ME/CFS84-XMRV+

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    I just sent another $50 to WPI for a total of $100. I'm going to try and send $50 every other month. everybody do whatever you can regardless of the amount, it all adds up!
  3. serenity

    serenity Senior Member

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    i am going to try to send $50 a month as well.
  4. Frickly

    Frickly Senior Member

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    Any Takers?

    If someone else will pledge to donate $25.00 per month to the WPI, I will match that by raising my monthly donation from $25.00 to $50.00 per month. :Retro wink:
  5. leaves

    leaves Senior Member

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    Deal!!!!!!
  6. valia

    valia Senior Member

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    I pledge to send $1 for every post I have made on PR, it was here I learned about the UK XMRV study in which I am included, so I think it is only fair that I put my money where my mouth is.
    I am not sure how much that is until I post, about $190 I think, and admittedly I can't send it all at once.
  7. Frickly

    Frickly Senior Member

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    YA! I donate through our cause http://www.causes.com/causes/421525 I think my monthly donation hits towards the end of the month so will check on the date and raise it before it hits (just in case you want to make sure I follow through) :)
  8. Frickly

    Frickly Senior Member

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    Thanks Valia! That is a great idea!

  9. kit

    kit

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    I'm in as well. I just got back from a doctor appointment and am reflecting on just how important this forum is to the welfare of those with CFS. My doctor asks *me* questions about CFS, he acknowledges what he does not know, he wants to know more about CFS, the information we have is not getting disseminated to doctors. The medical industrial complex *is* a barrier to information and research. We need to stick together and support those that are working with us like WPI. We need to ask our friends and families to support WPI as well. Peace out.
  10. valia

    valia Senior Member

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    Thanks Frickly, at least it can't be said that my posts are worthless from now on :D
  11. jimbob

    jimbob ME/CFS84-XMRV+

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    I think were really getting something started here!!!!!!
  12. jspotila

    jspotila Senior Member

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    You know what, Justin? This is an obnoxious post, and you know it. This thread was started to do something positive by raising money for research, at the suggestion of Dr. Bell (who I had the pleasure of meeting once). Taking potshots at another organization or employee of an organization is neither positive nor productive.
  13. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    :confused::confused::confused::confused:

    Eric, educate yourself- osler's web and Prof Hooper's Magical Medicine.
  14. Hope123

    Hope123 Senior Member

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    I'm bouncing off of Justin's post here because I didn't want to backtrack to Gerwyn's post but what I want to ask Gerwyn is what the mitochondrial marker is and why does he (or someone else) think that 200 people is the adequate number needed to show this.

    While I appreciate Gerwyn's contributions, on the spectrum of thoughts about CFS, I'm likely more conservative than he his and feel that sometimes studies are extrapolated too far and too many statements are made without good data support. I've been too tired to post refs for all my prior posts I realize but I'd like a reference for this potential mito marker for my collection of articles. It's fine to speculate; problems is it becomes a game of telephone where things are repeated over and over without support and then get accepted as fact by non-science folks or by those who have not or cannot (for cognitive reasons) backtrack through whatever evidence there is or isn't.
  15. Frickly

    Frickly Senior Member

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    Plea from Dr. Belll to donate to the WPI!

    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.
  16. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    You're right, I should have posted it on the CAA thread. I'm moving it over there.

    it's obnoxious, but justifiably imo. Taking potshots at what CAA is doing can be positive and productive if it motivates change or makes people consider an important issue. I consider urging you to allocate very scarce resources more efficiently to be positive and productive.

    Plus when you're a big-baller stacking chips to the ceiling like Kim, you've got to expect some "hateration". Comes with the territory.
  17. shiso

    shiso Senior Member

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    Fundraising

    Thanks Frickly for posting this. I'm planning to send out a similar message to friends by email, using the upcoming May 12 Awareness Day for timing. I've also had difficulty approaching friends about my illness, but I figure I need to overcome my fears as well.
  18. Rrrr

    Rrrr Senior Member

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    i upped the amount i decided to donate from $50 to $100. i did it via the web and i did it yesterday night.

    KEEP GOING FOLKS! WE CAN DO THIS. WE CAN SUPPORT OURSELVES THIS WAY.

    each donation is a donation to ourselves and each other. my donation is for all of you. i want you all to get better. to have full lives. to have a chance at happiness again. god, that sounds so melodramatic. but that is how i feel. i feel this illness has robbed me of my everyday, simple happiness at living life.

    xxoo
    rrrr
  19. usedtobeperkytina

    usedtobeperkytina Senior Member

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    I think it isn't quite fair to criticize CAA for Webinars. If I remember right, Jspotle told us CAA did a survey and Webinars and research were two things that patients wanted.

    It just so happens that the WPI discovery has led to many other Webinars at the time CAA was getting theirs going good. So we have had a big influx of information since October: Klimas, Bell, Mikovits, etc. But, if the timing on the XMRV had not been what it was, we would only be left with CAA Webinars. And I bet we would be loving the Light study information, Dr. Jason's, etc. We were starved for new information. CAA set out to do that, and lo and behold, WPI hits the motherload of providing new information. It's hard to remember now what it was like, pre-XMRV. But the decisions on money that CAA made was made in the pre-XMRV culture for CFS.

    I wish CAA was doing more in the way of public awareness and doctor education. But someone else would say research is more important. And someone else would say Webinars are important to inform patients of new research developments. For example, I think lobbying Congress is a waste of time, based on last 20 years. Yet CAA still puts time and effort in that. But I also know that my opinion is from the outside looking in.

    The fact of the matter is, either CAA is not efficiently using funds or there just isn't enough to do all that is needed.

    This all leaves me very discouraged. But at least we now have the interest of a whole bunch of new researchers. We have some buzz and a conference in September bringing these folks together. This is more than what we had in September of last year. So, I think we should all focus on the positive change we have experienced.

    But, I do believe we should give Bell's letter the sober attention it deserves from a normally compliant man. I do not think we should take lightly his public confession of possible mistake and his fear and his request.

    Support who you want to. This is free market. If CAA does not serve patients well, either by choice of focus or how much is spent on employees, then the funds will dry up. Same with WPI.

    In time, the one who serves better will get more and be able to do more.

    There are many other organizations to choose from. So, at least we can choose where we give our support.

    Tina
  20. starryeyes

    starryeyes Senior Member

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    We just gave $50.00 to the WPI and I sent Dr. Bell's letter to my folks who have always been supportive of ME/CFS.

    Let's keep the ball rolling!!

    Donate NOW to the WPI!! Our lives depend on it!

    :victory::In bed::thumbsup::victory::wheelchair::sofa::victory::headache::Sign Good Job::victory:​

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