August 8th, 2018: Understanding and Remembrance Day for Severe ME
Have you heard of our Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance? Please join Jody Smith in observing this day and honoring the 25% of those with ME/CFS who are most severely ill.
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The NIH Pilot Program: Wait and See - Tour de force blog by Jenny Spotila

Discussion in 'General ME/CFS News' started by Cort, May 21, 2018.

  1. Cort

    Cort Phoenix Rising Founder

    alkt, Molly98, Tally and 1 other person like this.
  2. Tally

    Tally Senior Member

    NIH threatened us that if we're not amicable no researcher will be interested in us. They scared us into submission. Then when they made sure we're not going to be a problem, they were free to make sure no researcher will be interested in us.

    I really don't know why ME patients are not more angry and disruptive in our advocacy. How many decades have to pass before we realize that being nice doesn't work?

    I am looking forward to see which suggestions for action are in the next post.
    alkt, shannah and Jackb23 like this.
  3. neweimear

    neweimear Senior Member

    alkt likes this.
  4. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    I actually agree with this specific point from the NIH. We already have consensus definitions, and we need biomarkers more than anything else to do with definitions. However this would be best served by ringfencing funding for biomarker discovery, and especially diagnostic biomarkers. Claiming this, without funding, is saying there is a clear line of research and then failing to fund it.

    Let me be clear though ... we have oodles of biomarkers. Just the ones we have need lots more investigating. Some combination of the existing ones might be diagnostic, or provide multiple diagnostic tests. So for a start it would be necessary to have the funds and other resources to investigate those.

    The reason why I agree with the NIH on the basic idea, though not failure to fund, are both scientific and political. First, definitions based on biomarkers are much stronger, and it accelerates research into treatment and cure. Second, alternative views of what CFS is, including a psychogenic disorder, have more latitude with consensus definitions. Once we have biomarkers that diagnose ME and CFS then they wont be as able to run sham studies any more without being at least heavily scrutinised.

    Private donations, including crowdfunding from patients, is how we are getting a lot done right now. However grants provide funding certainty. Right now ME and allied diseases may be costing the world a trillion dollars a decade ... and we spend less than a hundred million per decade on research, way less. Also too much is spent on psychiatric research, I think in part because they can seemingly make overblown claims without consequences. They promise the world, they promise financial savings, and they deliver .... ?

    I look forward to ideas on how to advance research funding, including the next blog. I do think we need to determine clear objective goals, and then push hard for those specific things.

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