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Searching for a diagnosis: a network of doctors tries to solve medical mysteries

Discussion in 'Other Health News and Research' started by AndyPR, Apr 24, 2017.

  1. AndyPR

    AndyPR Senior Member

    Thought this was an interesting read. As far as I can see though, ME would not qualify - https://undiagnosed.hms.harvard.edu/

    https://www.statnews.com/2017/04/20/rare-diseases-doctors/
     
    slysaint, Valentijn and Gemini like this.
  2. Murph

    Murph :)

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    Sounds like how ME/CFS patients would've felt 20 years ago. While we don't have much knowledge at least we have a label for what ails us and a website or two we can visit to learn about it. Having a disease nobobdy else has your chance of getting research funding is presumably even worse.

    "Even with the best technology and the finest brains at work, progress is slow. Since its launch, the network has received nearly 1,400 applications on behalf of patients. It has accepted 545 for review so far. Just 74 of the cases have been diagnosed, including 11 at UCLA. Andrew Whittaker’s case is among many in progress.

    It’s like battling “an unknown enemy,” said Dr. Euan Ashley, one of the principal investigators of the network’s Stanford University site. “That is a particular form of torment that other patients don’t have.”
     

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