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Does it make ANY SENSE not to vote for CAA to get big research $$$ in the Chase Conte

Discussion in 'Action Alerts and Advocacy' started by Sasha, May 5, 2011.

  1. muffin

    muffin Senior Member

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    USA!
    I voted for both WPI and CAA. Don't have to like or agree with CAA but they are getting research done and for that I would vote for the devil. Remember: funding for real research means a cure. Really quite simple. Vote for both WPI and CAA to get us off the couch and out of the damned bed.
  2. Dolphin

    Dolphin Senior Member

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    I don't think I will be voting for any other charities than WPI and the CAA till near the end I think. I would worry they would end up ahead of the CAA (and possibly the WPI). If near the end, they don't seem to be a threat to either, I may vote for other groups.
  3. Dolphin

    Dolphin Senior Member

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    I realised something earlier which I thought I'd highlight:

    Charities only get one shot at round 2 - after the one, both the WPI and the CAA will never be eligible again*.

    So we need to make an all-out effort.


    *Indeed this time next year, there may be a contest for charities with turnovers of over $1m where there are no eligible ME/CFS charities.
  4. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Merck and other 'big pharma' firms make lots of vaccines and if it were shown that vaccine injury is (in part or in whole) responsible for ME then their liabilities would obviously be catastrophic.

    Something is very fundamentally fishy about CAA. I would not be surprised if they were supported by pharmaceutical firms, CDC and NIH and insurers.

    That said, I will vote for CAA and WPI in the Chase contest because their current research program (except for the overblown overhead taken out by CAA) is good. Free money for research is good even if it goes to CAA.
  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Right! This is it. Up to $900,000. This is huge. Let's get out there for both WPI and CAA.

    Potential Allies:

    Other Illness/ Medical Orgs in the Contest (finalized list, place a end of Round 1):
    13. Dogs for the Deaf
    26. Intl Rhett Syndrome Foundation
    28. Nat Marfan F
    44. FANCONI ANEMIA RESEARCH FUND
    53. The National MPS Society
    65. FLORIDA'S VISION QUEST
    69. EPILEPSY FOUNDATION OF FLORIDA INC
    93. Infant Welfare Society of Chicago
    96. Treatment Action Group (AIDS)
    98. Cancer Care Services
  6. markmc20001

    markmc20001 Guest

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    HI Sasha. and All

    I can't provide proof or links for why CAA is working with Big Pharma. However, It's my understanding the CAA helped tank Dr Elaine De-Frietas back in the 1990's by not supporting the publishing of her book that revealed a retrovirus. (I think it's detailed in Osler's web) That's enough for me.

    If you look at HIV every panel out there has somebody from big pharma(even though everybody had to sue to get HIV acknowledged). There is a revolving door between Big Pharma and the CDC. Big pharma has it's own SPIN media center. I'm pretty sure Big Pharma are intimately involved in orchestrating all the stuff we go thru here for decades. Probably other special interests too.

    I don't want to cut off my nose to spite my face, but the CAA needs to get the message they are out of the picture of advocacy for CFS patients. Getting them funding keeps them in the loop. I want them out.

    One more point. I personally am guessing drugs aren't the best solution. I think the remission lies in nutraceuticals and other immune enhancing substances. Programs fine tuned to ones genetics. Maybe a little genetherapy to correct the flaws. WHo knows for sure. I just don;t trust the Big pharma after what I think they have pulled on the public for decades.

    Getting the body to cure itself like Rich Van K advocates is a better path in my mind. Just my brain fogged opinion.
  7. markmc20001

    markmc20001 Guest

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    Hi Sasha. I drew a cartoon to illustrate how Big Pharma and the CDC have taken control of our doctors and our wallets, and keep us sick coming back for more with one fell swoop. You can find the cartoon in the first post of the link.

    http://forums.phoenixrising.me/showthread.php?10862-cartoon!-Let-s-laugh-and-respond...

    ANyways the cartoon covers it with very few words. Not a great artist, but you get the idea.

    Big Pharma probably creates some good drugs that might help some people. However, they also have this thing with pushing a bunch of marginal drugs that have practically bankrupted the country and make some people more sick. It's a deep subject, but in my mind there are some outright criminals in that business. SOrry to get off topic on Big Pharma, but there is some very strange stuff going on around vaccines that gets my goat.
  8. WillowJ

    WillowJ Senior Member

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    thanks, Dolphin; good advice and good info to know
  9. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Speaking of cartoons, you might want to check out this thread:

    http://forums.phoenixrising.me/show...ident-Obama-made-a-promise-to-ME-CFS-patients

    Hopefully many can do this, and perhaps it will make a difference?

    GG
  10. Sasha

    Sasha Fine, thank you

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    But would you want the CAA to lose out on up to $500,000 in research money because of something you believe they did wrong about 15 years ago?

    I agree with you that Big Pharma has it's fingers in lots of pies and that it would be better if it weren't the case but we still need research into our illness if we're going to get better. Whatever level of funding CAA get from Chase, I don't think it will impact the sort of things that people on the forums object to - their public statements (which don't cost them anything to make) or their level of salaries (which will continue to be met from their existing income). They have already said that they are out of advocacy - that's a message that they have already got loud and clear.

    I hope you're right about nutraceuticals etc. - but if you are, it's going to take research into the mechanisms of our illness and then clincial trials to identify what nutraceuticals we should be taking. Lots of people have tried lots of things, including Rich van K's protocol, and many get no benefit or get worse. It's far from clear at the moment how we can help ourselves with natural methods so it needs research. However, if XMRV or something similar is behind our illness, we're going to be in the same position as people who are HIV+ in that we're going to need more research on XMRV, and then many clinical trials to establish what works. And probably some heavy duty drugs (I wouldn't want to be an HIV patient without the benefits of what has come from Big Pharma, even though I agree that Big Pharma generally put the bottom line before people). That's a lot of research we're going to need, either way.

    On another thread, it has been reported that the NIH have just announced at the CFSAC meeting today that they're not releasing any more money for ME/CFS research, in contradiction to what was promised at the NIH SOK meeting recently. Without money from research charities, we've got nothing. I believe we desperately need every research dollar we can get.
  11. Dolphin

    Dolphin Senior Member

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    Another thing about the CAA and Elaine deFreitas is that they gave her quite a lot of money in total (over US$400,000 and that was around 20 years ago which would be equivalent to a lot more today with inflation). Maybe they should have supported her more but she would have been in a worse position presumably if she had never got money from them (e.g. because they didn't have it to give).
  12. Dolphin

    Dolphin Senior Member

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    CFIDS Association of America's "BIG IDEA" for Chase Community Giving

    http://on.fb.me/itklJE
    i.e.
    http://www.facebook.com/notes/the-c...at-midnight-edt-please-vote/10150260426630539
    (150 word limit)

  13. Dolphin

    Dolphin Senior Member

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    A message from Annette Whittemore

    From the Whittemore Peterson Institute Facebook page:

    ---

    Links for the two organizations are:

    (i) the CFIDS Association of America: http://t.co/VZEd5Pk

    (ii) the Whittemore Peterson Institute http://t.co/Ev8j2dP

    ---
    ETA: I set up a specific thread to discuss it: http://forums.phoenixrising.me/show...temore-encouraging-people-to-vote-for-the-CAA rather than have a discussion spread over lots of threads.
  14. Dolphin

    Dolphin Senior Member

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    Info. on the research the CAA funded in the last round of funding

    This message was posted on Co-Cure http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1105c&L=co-cure&T=0&F=&S=&P=2762 :

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