1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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The Chronic Fatigue Initiative and Interview with Mady Hornig
In a follow-up article to the recent IACFS/ME conference presentation in San Francisco, and after speaking at length with Dr. Mady Hornig, 'searcher' delves deeper into the impressive work being completed by the Chronic Fatigue Initiative, and focuses in on those cytokine results ...
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FDA Webinar was just held: "Working Together for Change" -- anybody have comments?

Discussion in 'Action Alerts and Advocacy' started by waiting, Nov 15, 2012.

  1. waiting

    waiting Senior Member

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    Does anyone have comments about the FDA webinar that was just held?

    There were excellent questions from members of our community at the end of the webinar. It's a shame there wasn't more time allocated for this segment. However, does anyone know if this is a first for the FDA to hold an ME-focussed webinar?

    For those who were unable to participate, the FDA will post it soon.

    (I couldn't find another thread on this webinar...?)
  2. SpecialK82

    SpecialK82 Senior Member

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    I was very happy to hear the two patient representatives from other illnesses. I think that we can greatly learn from their successes. I wanted to ask the reps (but we ran out of time) if they would be willing to meet with an ME/CFS advocacy group and help us learn their models. This is a frustrating process for sure, but I would rather work towards something than sit around saying that our patient advocacy groups/government aren't doing enough for us.

    I'd like to ask these reps questions like:
    - how did they get industry interested in an illness that effects so few?
    - how did one of the illnesses (I think MD) encourage research when they didn't have a biomarker?

    We have to partner with the government to push our agenda and it's time that we got serious about it. I don't really want to hear anymore what the government hasn't done for us in the past - I want to talk about what can they do for us now!
    WillowJ, taniaaust1, GhostGum and 2 others like this.
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Great questions. Didn't get a chance to check this out, but am looking forward to it when they post it.
  4. waiting

    waiting Senior Member

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    Yes, it would be interesting to learn more detail about the methodology these two groups have been using and their "war stories".
    • I would also like to know, though, the CAA's impressions of what they said. I would find it surprising if the approach these two reps described hasn't already been attempted over the past 20+ years, by the CAA, and also by other patient organizations. Has our (ME) collective approach been so different?
    • Or is it the government or drug manufacturer or researcher response in our case that has been different?
    • I also thought I heard one of them say that they had several million in their own coffers to support things like clinical trials -- how did they raise that kind of money? Is some of it government funding? Is the reason we are unable to raise that kind of money only due to the false (and continually perpetuated) impression that ME is not serious?
    taniaaust1 likes this.
  5. Mark

    Mark Acting CEO

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    Look out for an article about the webinar on the website next week...
    SpecialK82, taniaaust1 and SOC like this.
  6. SpecialK82

    SpecialK82 Senior Member

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    Yes, I am wondering too how much we have tried these approaches, and the CAA would be good to loop into the discussion. I think that we have some unique hurdles with ME/CFS that these other illnesses do not have. We don't die directly from it (at least not fast enough for the medical community to draw a correlation), we have a huge public relations problem - we don't appear sick, stupid name, etc.

    But I do think we as a patient community are missing out on huge opportunities to learn what we can from these successful advocacy campaigns. I also think that we could learn from MS advocacy - what worked before MRI's could show MS, how did they drive the ball forward? They dealt with the same disbelief that we are facing.

    We also need to truly partner with these government agencies wherever and whenever we can. I think when we only vent our frustration on them, it causes further divide. It might make patients feel good for the moment but it's ineffective in moving ahead.
  7. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    CAA was not representing our interests in DC as they should have been. They had been "captured" (in the argot of public choice legal theory) by CDC.

    In the 1990s NIH's Stephen Straus actively and directly discouraged interested drug companies such as Chiron, which expressed interest in developing anti-retrovirals for ME, by telling them that ME was hysteria.

    I agree that we can probably learn a lot from how advocates for these diseases got attention from the fed govt and drug companies. I would also include AIDS and AIDS activists such as ACT-UP in that category.

    I agree that we should work with the govt when it shows good faith efforts to work and or engage on ME. I think it is also necessary to ramp up criticism of CDC and NIH. In litigation, the old saying is that the best way to settle a case is to prepare for trial. that completely holds here as well. We have zero leverage with the government if we do not continue to speak up and to increase the volume; at the same time we should be completely open to reasonable, bona fide negotiation and dialogue with them.
  8. WillowJ

    WillowJ Senior Member

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    I am grateful for the people at FDA who are willing to pursue this disease and figure out why things are not working and problem-solve how they personally can influence other industries and agencies to make things start to work. That is amazing, and it is something we've not had before (to my understanding; I'm not new to the disease but I'm still a relative newcomer to the disease community).

    I'm also thankful for the people from other disease groups who were willing to take the time to share what has worked for them. Obviously we do have some barriers that I think they may not have had, but at the same time we may be able to use some of the strategies which have worked for them. We just will need additional strategies to get around/past the deeper stigma.
    SpecialK82 likes this.

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