WPI denied 6X by gov't for $ for research :(

Discussion in 'Fibromyalgia Main Forum' started by victoria, Oct 22, 2010.

  1. victoria

    victoria New Member

    The gov't is claiming a lack of interest on the part of researchers regarding CFIDS/FM/ME, yet WPI has been turned down 6 times! Insanity. We alls hould write at least a few of the people listed below.

    The full article is at XMRV Global Action at FB, but I printed most important part below, not sure if you can see it on FB if you're not already a member of FB?


    WPI Shut Out of ME/CFS/XMRV Research
    by XMRV Global Action on Friday, October 22, 2010 at 3:18pm

    Over the last few weeks there has been growing concern about the lack of funding for research in the area of ME/CFS and XMRV. We have heard several times during the CFSAC Meeting and at the 1st International XMRV Workshop that the reason studies are not being done is a direct result of a lack of interest on behalf of researchers. We have been told that grant applications are not being submitted to the NIH to study ME/CFS and XMRV.

    However, it has recently come to our attention that the Whittemore Peterson Institute has applied and been turned down for a grant in this area of research SIX TIMES since the publication of the Science paper in 2009. In addition 3 collaborators of WPI have also been denied funding. It is an outrage that the Whittemore Peterson Institute, currently our greatest source of hope for real breakthroughs in neuroimmune disease and XMRV is being shut out.

    We would like to encourage every person affected by neuroimmune disease and/or XMRV to contact the National Institutes of Health with your concerns regarding this troubling information.

    Secretary Kathleen Sebelius kathleen.sebelius@hhs.gov

    Francis Collins collinsf@od.nih.gov

    Dennis Mangan dennis.mangan@nih.gov

    Anthony Fauci afauci@niaid.nih.gov

    Thomas Frieden txf2@cdc.gov

    Wanda Jones Wanda.Jones@hhs.gov

  2. simonedb

    simonedb Member

    but they fund this guy for some reason:

    probly hoping he focuses more on prostate, its partly sexism cus CFS more associated with women... and also just still trying to keep cfs under the radar since the initial neglect of cdc in 80s, once you start a lie ya gotta keep going.

    anyway, that aside, yes call fax email etc those guys especially sebelius, do it from different email etc so they can't block you and change your message and maybe don't always put cfs or xmrv in the title until they get to the body of message. change it up.

    Its your tax money that is not being spent on your health issue, for 25 years, except to pay people like Reeves to make up bogus psych studies to distract everyone from the viral component.
    [This Message was Edited on 10/23/2010]
  3. quanked

    quanked Member

    Interesting and angering info.

    I am in the middle of a flare and this news just contributes to my sense of hopelessness that comes with my flares. I turned 60 this year and fear I will go to my grave with this disease remaining victorious.

    I cannot even allow myself to get outraged and motivated to fight back. I do not have the energy, mental capacity or drive to accomplish anything meaningful.

    I know we need to stand up for ourselves--we need to apply relentless pressure on the powers that be but I wonder how this can be done when the disease robs us of the very abilities needed to accomplish these tasks. This is all such insanity.
  4. mbofov

    mbofov Active Member

    This is truly depressing - I'll send some e-mails.

    But I would first like to verify that this is true - it says "it has come to our attention", which is a very vague phrase, not saying how it came to their attention or who gave them the information. I wish the poster had said that WPI told them this. I guess I'll e-mail WPI and try to confirm that this is true because the only thing worse than it being true, would be to barrage the NIH with e-mails when it wasn't true.

  5. victoria

    victoria New Member

    good point. I suppose we could ask on FB where their site is, it doesn't seem like they have a separate one.

  6. mbofov

    mbofov Active Member

    I'm not on Facebook so I don't think I can ask them anything. THat would be a good way to go too, to ask them their source.

  7. spacee

    spacee Member

    Cancer seems to be big in the new for finding cures...and they would get the money.
    Very frustrating for us all. Hope it doesn't keep on this way.

  8. mbofov

    mbofov Active Member

    I just e-mailed WPI, so hope to hear from them soon. If I don't hear anything by Wednesday or so I'll just call. I'll keep you all posted.

  9. victoria

    victoria New Member

    Weirdly, I asked on the xmrv global fB page, but don't see my request now. They may have removed it, or I goofed and it didn't actually post (LOL I do not count anything out). Maybe I'll repost to see what happens....
  10. mbofov

    mbofov Active Member

    I just called WPI because they did not respond to my e-mail, and got a recording saying they are moving into their new building and offices won't open until the end of October.

    So I'll just check back with them next week.

  11. victoria

    victoria New Member

    still don't see my post on FB... but I still don't entirely trust myself.
  12. mbofov

    mbofov Active Member

    I know what you mean about not entirely trusting yourself. I am hoping I remember to call next week! (actually a little impressed I remembered to call today)

  13. gapsych

    gapsych New Member

    The government turns down many applications for grants. Some are turned down because of design problems but a lot of it has to do with the economy. This is very likely a factor.

    The fact that there is not enough funding is made worse by the poor economy.

    I would love to know what the percentage of grants get turned down for all areas.

    I would think the lack of research is more complicated than scientist are just not interested.

    Dang, ya can't win!!!

    [This Message was Edited on 10/28/2010]
  14. mbofov

    mbofov Active Member

    I know you don't think much of Osler's Web, but it clearly explains why we are extremely sceptical of any honorable motives on the part of the government in denying grants. They've been denying grants for 25 years, they misappropriated funds, they ostracized researchers who focused on CFS, they ignored clinical findings, etc. etc. etc. We're not being paranoid. Read it and weep -

  15. mbofov

    mbofov Active Member

    Well, I finally remembered I was going to call the WPI this morning to see about those grant denials. And I tried to go to their web page to get the phone number, and it seems their website is down. Perhaps they still have to sort things out after their move.

    I'm going out of town for a week tomorrow to see my kids and grandkids in Texas - yay! Am halfway looking forward to it and halfway dreading it (because of crashing), but c'est la vie. I'll survive.

    Anyways, I won't be able to do any more on trying to contact WPI until I after get back.

    If anyone else wants to follow up on this feel free. Otherwise I'll make a note to do so when I return (after I recover my from trip)