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Never Ask Us if We're Hungry -- The Answer's Always No
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Article: Allies - Annette Whittemore Endorses CFIDS Association and Two Other Organizations In Chas

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, May 22, 2011.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. Sasha

    Sasha Fine, thank you

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    Great - I'd already voted for the WPI & CAA & have just voted for the additional two. I put the following comment on their pages - feel free to adapt it and in particular to copy the links to the WPI and CAA pages to help them easily find us to vote:

    Good article, Cort. I think it's shameful that with a mere 1% budget cut the NIH won't reshuffle its priorities to give us more research money. We absolutely have to get all the research money we can to our research charities and keep driving things forward. XMRV has really got a head of steam up but unless we take advantage of it now, we may not get another such opportunity again for a long time.

    Get voting, everyone! Tell your friends!
  3. Cort

    Cort Phoenix Rising Founder

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    Thanks Sasha...I didn't know that it was a "1%" cut in the NIH that got them in such 'dire straits' :rolleyes: -more on that later...

    Anyone who likes this or any other articles can share them on Facebook or Twitter or Wordpress - simply by clicking on the Share button on top....
  4. Sasha

    Sasha Fine, thank you

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    Actually, 1% is rounding up - the precise figure is 0.8% (more detail in Science News). Absolutely no excuse at all for not increasing spending on ME/CFS research by reprioritising.
  5. SpecialK82

    SpecialK82 Senior Member

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    Annette just put on another message explaining her position, it really chokes me up, I hope this will be the beginning of a new working relationship:

    Many people have asked why I authorized a posting asking supporters of the WPI to vote for the CAA in this round of the Chase Community Giving Campaign.

    It is critical that we create one community around a shared mission to find scientific answers to neuro-immune diseases that for too long have been neglected. As the retroviral discovery by the WPI and many others continues to bring significant focus on ME, CFS and neuro-immune disease there still exists great misunderstanding among some scientists and physicians. Many others still do not recognize the importance of the biological underpinnings of this disease or the severe impact it has on the lives of its victims. Therefore, we must come together to end the scientific ignorance that stands in the way of treatments and a cure.

    Although I am disappointed in the CAAs lack of support of retroviral research, I hope it will change its research priorities based on continuing advances in this field. In asking for your votes in this Community Campaign, I was extending my hand once more with the sincere hope that the CAA will support this significant biological research
  6. liquid sky

    liquid sky Senior Member

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    Do you think the CAA will reciprocate and support retroviral research, as Annette sincerely hopes?
  7. Ernie

    Ernie Senior Member

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    I think this last paragraph says it all. I wonder just how many times she has extended her hand in the hopes that the CAA would support biological research. According to Hilary Johnson it was 6 times grants were refused. I guess sometimes you have to say what you have to say when backed in a corner or attacked.
  8. Anne

    Anne

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    Cort, my foggy brain isn't sure how to read this. Do you mean that the NIH are postponing all grants for ME/CFS until next year? That they won't even spend $5 million this year?

    Or do you mean that they won't be increasing funds above $5 million until next year?

    (There was a Listserve e-mail from Mangan on May 12 about current funding opportunities of interest for ME/CFS investigators. How does that relate to the news today?)

    As always, thank you so much for keeping us updated. I am making everyone I have ever known vote in the Chase Contest. :Retro smile:
  9. caledonia

    caledonia

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    Great idea Sasha - I did the same thing - voted for the other two charities, then added your message with the link to WPI and CAA, so we can all hopefully win.
  10. Lynn

    Lynn Senior Member

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    Sasha, thanks as well. I had already voted for WPI and CAA but went back and voted for the other two charities and posted your message in the hopes that someone would reciprocate.

    I love this copy and paste stuff. it makes it so easy.

    Lynn
  11. Sasha

    Sasha Fine, thank you

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    You're both very welcome - where would all of us be without cut and paste!
  12. eric_s

    eric_s Senior Member

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    Teamwork is great and we need it, but it has to go in both directions of course.

    In my opinion it's most important that the people with ME/CFS unite and start to get more power and control of the process. We are in the same boat and have the same interest. This is the group we can trust most, in my view (ourselves). If a group representing us, no matter which one, then does not act in our best interest, we should stop supporting that group.

    Maybe there will not always be teamwork and cooperation between researchers, doctors or charities, but it won't be able to hurt us too much, if we, the people who actually have ME/CFS, are aware and united and push things in the right direction. That's why we also need membership based organisations, not only such like the WPI or the CAA. And we need to join and support those membership based organisations. We have the numbers and we can have a lot of financial power as well, combined. If we use that, we can force the other players to do the right things.
  13. Cort

    Cort Phoenix Rising Founder

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    Sorry.....its quite a strange system...as I understand it - there is no set amount for CFS or any other disorder...Instead there is an expected amount of money they feel they will spend each year based on what they spent last year.....They expect to spend I guess 5 million dollars next year....and that can change depending on how many grant applications come in that they wish to fund. That is still intact.

    What we were/are hoping for and what usually happens after a SOK Workshop is what's called an Request for Applications Grant package that goes above and beyond the normal funding levels. An RFA is money specifically set aside to a disorder. With the last RFA and the Neuroimmune Conference -as I remember we knew an RFA was part of the deal...This time nobody seems to be explicitly saying that...Instead they're we're going to wait until after XMRV is resolved and then talk about it. (By the way the NIH is announcing new RFA's all the time.....)
  14. Cort

    Cort Phoenix Rising Founder

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    I think maybe you meant XMRV research not biological research since all the CAA does is biological research. The WPI may have tried for 6 grants but not with the CAA. The CAA's last grant announcement occurred well before XMRV hit the fan. I imagine the WPI did enter a grant in that funding cycle but it was not on XMRV.

    The other grant proposals must have gone to the NIH. They did win one nice grant from them...but nothing on XMRV.
  15. Cort

    Cort Phoenix Rising Founder

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    I would be surprised if they would do that at this point for a couple of reasons. A) there seems to be a consensus that the BWG and Lipkin studies will tell the tale on XMRV. While Annette is obviously very clear that XMRV will work out I don't see how the CAA could be....

    I imagine that the WPI is kind of stuck in the middle; funders are probably leery of giving them more funds until XMRV has been validated and the contamination questions are resolved.

    If XMRV is validated I imagine the CAA and other organizations will respond. (How could they not?) Until then, with little money in their coffers, they're all waiting for the government funded studies to figure out what's going on and I imagine they will putting their money into other areas - and, as we saw, there are plenty of areas to put money into.

    I felt Annette was very magnanimous with her announcement - the WPI is in the drivers seat with the Chase project - and it was big of her to do that given what appears to be some friction between the two groups ...I would be surprised, though, if the CAA spent money on XMRV right now - but we shall see.

    I hope it is the start of a new working relationship....its going to be difficult after the Deckoff-Jones posts - its rare to see a leader in an organization go after another organization in the same field like that, even if it is in a personal blog.....but from what I've seen of them I would think both Annette and Kim could work together - they both seem like reasonable, smart, pleasant people.....
  16. SpecialK82

    SpecialK82 Senior Member

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    I couldn't agree more. It floors me that the best interest of our community is not first priority in both groups - we fight amongst ourselves and we all go down together - I am so tired of the politics - our wellness has to be number one, I think we should demand that both groups sit down and come up with a new understanding so that we can all move forward together. We can disagree on small things and each can work in their own arena of expertise, that's fine, but we have to support each other on the big things.
  17. Anne

    Anne

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    Oh, I see. Thanks for clarifying!

    So did Dr. Koh explicitly say that there won't be an ME/CFS RFA Grant package until the whole XMRV issue is solved?

    That could be a long way away! (as we know from previous time lines...)

    Did Mangan comment on this at all? (He seems like such a decent fellow.)
  18. beesknees

    beesknees Senior Member

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    Apparently this mutual relationship goes only one way. I posted this link on the CAA page and one minute later they took it down.

    "We have two charities that help ME/CFS elgible in the Chase contest. YAH!!!! We can vote for both. Double YAH!!!
    1. Cfids Association- go here http://bit.ly/eKvtwh
    2. Whittemore Peterson Institute go here http://bit.ly/lgSzGG
    In the upper left corner click "like", then click vote and allow. Your'e done! Then smile cause you just got one step closer to a cure. :))))"

    So it's ok for people to post on the on WPI wall to vote for CAA. But it's not ok for people to post vote for WPI on The CAA wall. This seems very unfair. I didn't say anything out of line, I even listed both organizations. I've been helping both WPI and CAA get votes. Needless, to say, I am angry. Just try posting anything mentioning Whittemore Peterson Institute on CAA wall and it will be removed in seconds. I thought we were working together now!!!
  19. OneWaySurvival

    OneWaySurvival

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    That's frustrating, Bees. Maybe someone from CAA can give us an explanation? Maybe they are being extra protective about not getting disqualified by Chase for forming alliances? If so, that seems very extreme. Charities looking for a cure for different medical conditions (or the same!) should be supporting each other in this contest.

    FYI everyone, many of us are working hard to get votes for Marfan (17th) and Rett's (13th), in addition to the 2 Annette mentioned. See the discussion here:
    http://forums.phoenixrising.me/showthread.php?11907-New-Chase-Coalition-ACTION-NEEDED
  20. SpecialK82

    SpecialK82 Senior Member

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    beesknees - "Apparently this mutual relationship goes only one way. I posted this link on the CAA page and one minute later they took it down"

    Your post is on there, I just saw it - if you hit "most Recent" at the top of the page you will see it

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