Powerful NY Times Op Ed on the Disenfranchisement Experienced by ME/CFS and Other Patients

Discussion in 'ME/CFS and FM News' started by Cort, Jan 14, 2018.

  1. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    A powerful op ed appeared in the New York Times on the disenfranchisement experienced by the chronically ill; particularly those with chronic illness. At one time this person was diagnosed with ME/CFS.
    Sancar, Paw, CJB and 3 others like this.
  2. Not dead yet!

    Not dead yet! Well-Known Member

    This part really goes to the heart of the problem, imo:

    Article: Eventually, because of the tireless advocacy of my wife, I was diagnosed with central nervous system lupus (an autoimmune disease that attacks the brain and central nervous system), as well as fibromyalgia, chronic fatigue syndrome and complex migraines. My lupus diagnosis would later be taken away and then given back countless times as suited the needs of health insurance and disability insurance companies to sort and manage me and decide how much care I was entitled to. The needs of my body were virtually irrelevant in this process as my diagnosis become a monetized affair where I had to jump through increasingly difficult hoops to “prove” it.
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  3. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Ouch....it's really amazing how little a hold the medical profession has of so many problems. There's still so much grey . My question is how much work is going to resolve these diagnostic difficulties?
    Not dead yet! likes this.
  4. Farmgirl

    Farmgirl Well-Known Member

    I am hoping for some soul searching in the medical community, and soon. I have been ill for a super long time and the suffering has just gotten worse and worse as the years fly by with no treatment, until now, when it is almost too late. Although i am thankful for the help I am getting now, the 3+ hours drive to the new MD every 6-12 weeks are hard on me. We have paid into insurance a lot of money all these years. I am thankful for all the good help on the Internet! I might still be in the dark otherwise.

    Sorry to hear of other people's bad experiences with medical professionals they thought they could trust. I think maybe there are at least a few of us with similar uncomfortable interactions. From personal experience, it just solidifies a doubting doctor's hunch that you are on the edge mentally when you start bawling in front of them when they tell you "you are just depressed".

    As a member of the medical community, we must remember that we, the patients, are paying the medical personal for a service rendered.

    Thanks for all you do, Cort.
    Merry and Forebearance like this.
  5. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Thanks Farmgirl. I think we are slowly but steadily making progress.
  6. Merry

    Merry Well-Known Member

    I'm with you, @Farmgirl. James Coyne reports:

    More doctors in tears, please.
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  7. Farmgirl

    Farmgirl Well-Known Member

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