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Ian Lipkin Outlines an Advocacy Plan

Discussion in 'General ME/CFS News' started by Christopher, Feb 3, 2014.

  1. Christopher

    Christopher Senior Member

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    The short of it:
    Dr. Lipkin is seeing constant immune activation in CFS/ME patients which is causing our disability, but does not have the resources from the NIH and CDC to find out what is causing it.

    There are sympathetic figures at the NIH and CDC that are willing to look for the cause of this immune activation if they are given money to do so.

    He also makes a direct comparison to the early days of HIV and AIDS. It is obvious to me from these hints and innuendos that he strongly suspects we are infected with a pathogen that our immune system cannot clear on its own, and he is telling us to push the federal government to give the CDC and NIH more money specifically to study this, while people like Tom Frieden and Tony Fauci are in position to direct the funding appropriately.



    http://www.mecfsforums.com/wiki/Lipkin_presentation,_CDC_Conference_Call_9/10/2013
     
    Last edited: Feb 3, 2014
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  2. Roy S

    Roy S former DC ME/CFS lobbyist

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    Tony Fauci is receptive to it?
    Sorry, I don't think this is true.
     
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  3. Roy S

    Roy S former DC ME/CFS lobbyist

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    It's Fauci I don't believe. Sorry, I should've made myself more clear about that.
     
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  4. vli

    vli

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    Simon likes this.
  5. Christopher

    Christopher Senior Member

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  6. Wally

    Wally Senior Member

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    @Christopher - I believe that longtime patient advocate and investigative journalist Hillary Johnson may not agree with the idea that Tony Fauci could be our white knight. Perhaps some additional reading/research on the subject might be worth looking at. :whistle:
     
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  7. Christopher

    Christopher Senior Member

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    OK Wally, but it seems the closest thing we have to a "White Knight" in the federal government is Dr. Lipkin, who has plead with patients to advocate a few months ago. I believe he is willing to find the answer, but does not have the resources to do so.

    Funding can either come from private donations (such as the CFI), patient-led initiatives (Jen Brea raised $200k from patients for her CFS/ME documentary), or the federal government - those are 3 avenues to attack.

    Does anyone know who is funding Jose Montoya's research at Stanford?
     
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  8. Wally

    Wally Senior Member

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    An anonymous donor.

    If you talk to researchers about the "money" part of this equation they would be thrilled to receive funds from private sources, but the reality is that to sustain this type of research over the long run, they need government funding. This money will need to come in the U.S. from the federal government (U.S. Congress). There are lobbying efforts already underway to step up the push for more federal funding. Hopefully, in the next few weeks a strategy to get more people involved in this effort will be able to be presented to the patient community. Right now there is lots of hardwork going on behind the scenes. :)

    I also believe there are people here on the Forum who are already talking about a crowdsourcing project. All of these ideas for raising money for research are good ideas, it just will take a lot of support by the patient community to make them a reality.

    Wally
     
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  9. Christopher

    Christopher Senior Member

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    So what is going to happen with something like the CFI, which is privately funded?
     
  10. Wally

    Wally Senior Member

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    @Christopher. Not really sure what you mean by what is going to happen? I would assume that private initiatives like the CFI will continue to fund CFS projects until funds run out and/or there are no projects that they choose to fund. I believe the Hutchinson Foundation funded the start up of the CFI with a $10 million dollar donation. You could certainly try to contact this Foundation to obtain additional information about any plans that they may have beyond what is currently listed on the CFI website. http://cfinitiative.org/
     
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