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Justina Pelletier to testify in Congress, pushing for new law

Discussion in 'Other Health News and Research' started by natasa778, Jul 17, 2014.

  1. natasa778

    natasa778 Senior Member

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    London UK
     
  2. Iquitos

    Iquitos Senior Member

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    Now why can't we get an ME patient an audience with Congress, like this???
     
    justy and RL_sparky like this.
  3. Valentijn

    Valentijn Activity Level: 3

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    Because adult ME patients never get involuntarily committed to psychiatric institutions in the US. And because the children who get committed have families who are under pressure similar to Justina's family. They had to defy a court-order and completely lost custody in the process. It takes some serious balls and maybe a little bit of crazy to go that far.

    In Justina's case there was also the issue of the hospital using her for a research project without her or her parents' consent, and that is what the congressional attention is focused upon.

    It also helps that she has a 100% biological diagnosis from a very respected institution. We get "chronic fatigue syndrome" in the US, which is not well-recognized as being purely biological, even though the research is pretty definitive.
     
  4. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I am amazed that she is able to do this after all that she has been through. What a trooper!
     
    Valentijn likes this.
  5. Iquitos

    Iquitos Senior Member

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    As you may realize, that was a rhetorical question. But I don't agree that our lack of an audience with Congress is "Because adult ME patients never get involuntarily committed to psychiatric institutions in the US."

    Then why doesn't Ryan ONeill(???last name) get an audience with Congress? He was a minor when he was taken from his family by Child Protective Services (or their equivalant) and denied contact with his parents and eventually with his grandparents. In fact, Mrs. Whittemore did testify before Congress a long time ago, about the need for research funding for this disease but nothing was done about it.

    And the laws are in place that could allow an adult American to be put in a mental hospital for believing she has ME/CFS. Since half of all American doctors don't believe it's a physical disease, I continue to be afraid of encountering just such doctors, and I suspect there are others who are afraid, too. I can see myself having to go to the emergency room for something and then being trapped in the "it's all in your head" prison when I try to get accomodation for my illness.

    To a degree, I've already experienced that lack of accommodation. In the hospital with a cast on one broken leg and my dislocated shoulder in a sling on the opposite side of my body, I was asked to stand and pee in a cup over and over and over all night long, while they pumped saline into me in the arm without the sling. Imagine trying to do that with three limbs immobilized, extreme exhaustion from the illness and the stress of it all, plus the pain of the bruises caused by my fall. Perhaps fortunately for me, the "sports medicine" doctor that ordered these "treatments" without ever actually seeing me believed that ME/CFS is just female hypochondria but didn't see that as a reason to involuntarily commit me. It's within the realm of possibility that if the emergency room doctor had been a psychiatrist, it might have turned out differently.
     
    Little Bluestem, SDSue and taniaaust1 like this.

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