May 12, 2017 Is International ME/CFS and FM Awareness Day
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Transcript & audio of Nov. 28 NIH telebriefing now available

Discussion in 'General ME/CFS News' started by Mary, Dec 14, 2017.

  1. Mary

    Mary Forum Support Assistant

    Southern California
  2. ErdemX

    ErdemX Senior Member

    Thank you, I was waiting for that to fully listen to Derya Unutmaz's presentation.
  3. Ember

    Ember Senior Member

    Rebecca Taurog argues, “You’re saying the science drives it and we’re not getting enough good grants to fund in ME/CFS, but we all know that there are grants that are not being funded that are by top scientists (54:30 – 54:45).” Amid the obfuscation, this telebriefing highlights some disheartening issues.

    1. Slow Pace:

    Where is the sense of urgency among “team tired” at the NIH? They plan to study 80 patients. Dr. Nath reports that their study has the capacity to handle, at best, only one individual a week (30:00). “So it’s going to be a while.”

    2. No Definition:

    Dr. Nath says, “If you don’t study the right patients, you’re going to...garbage in, garbage out (27:47).” But Dr. Koroshetz maintains that, without an agreed-upon research definition, the NIH is simply leaving the definition question up to the scientists to decide:
    Several years ago, the NIH P2P report recommended that for needed progress to occur the ME/CFS community should agree on a single case definition (even if it is not perfect). Remember this:
    Where’s our stakeholder-driven consensus definition for research? Apparently, the NIH ignores its own recommendations.

    3. Token Funding:

    Despite his claim to the contrary, Dr. Koroshetz dodges the question about the paltry level of funding for ME/CFS (56:00 - 57:15). Why was only seven million dollars allocated to support the research centres this year? And why is that funding projected to remain at the same low level over the next five years? Dr. Lipkin alludes to this problem:
    Dr. Koroshetz himself alludes to this problem when he speaks of “putting particular money, not really to solve the...we don't think that this amount of money is going to solve the problem:”
    Dr. Koroshetz says repeatedly during the telebriefing that “this is just a beginning (46:23).” But he claims that NIH can't do more:
    The NIH must be familiar with this telling graphic. It's been used to argue for a 25-fold increase in ME/CFS funding to bring it in line with NIH allocations for MS and other diseases:


    Apparently, the NIH can spare only enough to double our token funding.

    4. Systemic Bias:

    Dr. Koroshetz offers patients some advice. Lobby scientists: "But I think, for you, your passion, you have to make that infectious. Be persistent and get other people in your camp doing the science and competing for grants. That will guarantee that ME/CFS research will advance at the pace you want (57:23 – 57:40)."

    By inspiring scientists, our infectious passion will somehow "guarantee" the end of thirty long years of systemic bias. Meanwhile, “team tired” sincerely and publicly apologizes for its offensive slide (27:20 – 27:48), being terribly sorry and understanding “the sensitivity between the issue of fatigue and malaise and the importance of studying the right patients.” Dr. Koroshetz says, “We’ll learn from that, I think” (43:28). And he closes, pretending to the moral high ground of fair competition among diseases:
    In assessing our situation, Dr. Koroshetz dismisses the relevance of NIH data on burden of disease. We’re supposed to believe that systemic bias at the NIH doesn’t exist.
    Webdog and Wally like this.
  4. RYO

    RYO Senior Member

    I was at the NIH in March. Progress seems to be painfully slow. My perception is that there are limited beds on NINDS unit. It is extremely frustrating.

    However, it is hard to miss other very sick patients (including children) that are also there when the nurses wheeled me around the facility to and from testing areas.

    I know the Undiagnosed Disease Program is opening other centers around the country. It would be nice if there were other hospitals that could help with the intramural study but I am not sure they would have similar technical capacity such as metabolic chamber. Hopefully, they are learning from their intake and interview process so that perhaps in the future they can streamline and achieve greater efficiency.

    I am still hoping that I'll have the stamina to complete phase II. As I get closer, I realize it may be beneficial for them to obtain second round of data while I am going through severe relapse (debilitating brain fog, dizziness, tinnitus and other neuro symptoms). Having undergone first lumbar puncture in phase I, I am not looking forward to 2nd LP after exercise challenge.

    I appreciated the comment from patient who asked about tapping the expertise of autonomic specialists at Mayo and Vanderbilt.

    I also wish that they could collaborate with experts who study muscle disorders/pain. There are silos in every organization. Perhaps the NIH will appreciate the need for greater collaboration while studying a complex disorder such as ME/CFS.

    The sad reality is that as more time goes by, what little optimism I have dwindles further.
    Last edited: Dec 18, 2017
    Wally and Webdog like this.
  5. Vassie


    I really can’t believe this!

    Getting the good scientists in our camp. Great idea. Like at Stanford, right. We get the Nobel laureates in and the NIH says: Sorry, no money for you.

    Competing for grants. Which grants would that be? Don’t make me laugh (or cry).
    Wally likes this.
  6. dreampop

    dreampop Senior Member

    Do you mean with the NIH in general or the intramural study or just in general? I've taken a few steps back recently and, it looks to me like it could be a long, long time before we get to understanding and treatments. The Ritux thing really shocked me tbh and I have reservations about the NIH intramural study, but I won't even know if those are warranted for years. Very frustrating right now.
    RYO and Wally like this.
  7. RYO

    RYO Senior Member

    I am referring to the entire state of ME/CFS knowledge and research including the NIH Intramural study. It may easily take until 2020 before useful data emerges from intramural study. I share the observation that the first rung of the ladder is to find objective biomarkers that the average doctor can use to diagnose this disease. The lack of a biomarker also severely hampers any study because selecting the right patient population is critical.

    We are begging for funding from a public institution whose budget is determined by lawmakers/politicians. I think if you ask journalists who follow science, they will tell you the NIH / basic science research has been chronically underfunded for decades. Yet as a nation we spent over a trillion dollars on fighting wars. It is also possible that more funds are devoted to saving an obscure sea snail than those suffering from ME/CFS. (no offense to sea snails)

    We are a tiny voice in the chaotic roar of modern tweets, chats and likes.
    Last edited: Dec 19, 2017
    dreampop likes this.

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