Despite Our Losses, People with ME/CFS Want More
We've been cheated by ME/CFS and we all know it. That's a no-brainer, if you'll pardon the cognitive pun. And loss didn't just result from the bad things that befell us. It also encompasses the good things that just ... never came. The absence of bounty. Of wholeness. Of peace.
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When the Illness Is a Mystery, Patients Turn to These Detectives

Discussion in 'Other Health News and Research' started by antares4141, Jan 12, 2019.

  1. antares4141

    antares4141 Senior Member

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    Truth or consequences, nm
    It's funny.

    You would think when illnesses like GWS or CFS appear and affect large segments of the population relative to other diseases, they would want to send some of us to an institution like this.
    https://commonfund.nih.gov/diseases

    Instead we have to tolerate abuse from unethical authority figures who do irreparable damage to us dismissing our illness as psychological.

    At the bottom of the UDN website they have contact info. I'm going to be bugging them. I would encourage everyone else on this site to do the same. Obviously they can't admit 800,000 to 2 million of us but they can take a suitable sample size that would represent us. Which might help shed some light on the illness in the form of some type of overlooked biomarker.


    https://www.nytimes.com/2019/01/07/...Z7G-eBnVXvbXAxir6gSVnUb2WwyMfwgxxSN6HlkLNXRyI
     
  2. Wolfcub

    Wolfcub Senior Member

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    SW UK
    Well said @antares4141 !

    I agree with you 100%.
    Although the UDN is US based, it would be a good thing if patients in other countries could also refer their doctors to this website/research study, and to the New York Times article, to plant seeds of inspiration if nothing else.
    Well...that's my idealism speaking there of course.

    And yes, getting the UDN fully on board with ME/CFS in the first place is the thing to do.

    It might be feasible to mail samples from patients to the UDN from places such as the UK etc. (That is if doctors were motivated to do so and not dismissive!)
     
    YippeeKi YOW !! likes this.
  3. antares4141

    antares4141 Senior Member

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    Truth or consequences, nm
    That is a good point mailing samples! Open medicine foundation has plenty of those!
     
    YippeeKi YOW !! likes this.
  4. YippeeKi YOW !!

    YippeeKi YOW !! Senior Member

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    Second star to the right ...
    @antares4141
    And some of us are lucky if that's the only damage they do ....

    I really enjoyed this article, just the concept that someone Dr's out there are actually trying to help people that their peers have dismissed as deluded, deranged, or lying .....

    Thank you for posting this .....:):):) :thumbsup: :hug:
     
    antares4141 likes this.
  5. antares4141

    antares4141 Senior Member

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    Truth or consequences, nm
    :):):):)
     

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