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In the USA, too: 15 year old with Mitochondrial disease labeled Psychosomatic, 1 year in Hospital "

Discussion in 'Other Health News and Research' started by Gypsy, Feb 22, 2014.

  1. Gypsy

    Gypsy Senior Member

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    Saw this on the news and can't believe this is happening here. You can google her name "Justina Pelletier" or her father "Lou Pelletier" and find all sorts of links. She has been in Boston Children's Hospital for almost one YEAR after they disagreed with another facility and physicians who diagnosed her with mitochondrial disease. Her mitochondrial treatment has been stopped and she had deteriorated rapidly.

    There is much more to the story in the articles.

    It makes you think, what could they do with children or even adults with ME/CFS if they decide we have a psychosomatic disorder? I thought only people who were a direct and imminent danger or threat to themselves or others could be held like this in America.

    http://www.theblaze.com/stories/201...alk-to-us-i-want-to-have-all-my-guns-blazing/

    www.youtube.com/watch?v=NI-n9VokiXU

    http://abcnews.go.com/Health/advoca...story?id=22312907&ref=https://www.google.com/
     
    taniaaust1 likes this.
  2. Kina

    Kina

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  3. Gypsy

    Gypsy Senior Member

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    Thanks, Kina. I thought I had seen this story before somewhere....low and behold, it was probably here!

    I just saw the father on TV two nights ago with the latest update.
     
  4. taniaaust1

    taniaaust1 Senior Member

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    Any severe illness in which the person becomes unable to take care of themselves well . could end up having the unfortunate consequence of being said to be a danger to oneself if the psych profession dont believe the person is truely physically ill.

    Its happening the world over, every day people have diagnoses which are missed, severe illnesses missed who instead are deemed to be psychologically caused. The psych profession is a danger to all of us as long as people out there dont believe ME/CFS is a real illness. Ones own doctors or specialists could be overridden by members of the mental health profession. It all depends on the "trend" of whereever you are, the country you are in, the location you are in.. at the time as there is no way to "prove" you have ME/CFS according to psychs and also no way to prove that you havent got a mental health disorder if they deem your symptoms to be illusionary and your abnormal test results to not at all count.
     
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  5. Martial

    Martial Senior Member

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    Isn't mitochondrial disease very provable though? At least from bio markers or genetic testing?
     
  6. Gypsy

    Gypsy Senior Member

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    Jessica, 25, is the second-oldest of the Pelletiers’ daughters and has mitochondrial disease herself. The disease can manifest itself in various ways, but at its root, results from a defect in the mitochondria, an organelle inside cells that produces energy. Jessica’s diagnosis was established medically through analysis of the cells of her muscle tissue.

    [​IMG]
    Justina Pelletier is a teen who her family describes as highly social and a talented artist. (Image source: Facebook)

    In Justina’s case, a doctor evaluated her symptoms, considered her family history — mitochondrial disease can be inherited — and gave her a clinical diagnosis of the disorder. Under the care of physicians at Tufts Medical Center, Justina was treated for mitochondrial disease.

    But when she got the flu and her parents were told she should be transferred to Boston Children’s Hospital, things changed.

    As Lou Pelletier explained it, Justina was supposed to be transferred in an ambulance, for insurance purposes, to the Boston hospital, and brought through the emergency room but seen by a gastrointestinal doctor. Instead, upon arriving, he said she was stopped and evaluated by a neurologist, who, Pelletier said, didn’t look at her medical history or contact her other doctors. This doctor, according to Justina’s father, said he thought the illness was all in Justina’s head — that it was somatoform disorder.

    The physicians at Boston Children’s Hospital disagreed with her diagnosis of mitochondrial disorder and wanted to take a different approach to her treatment. At first, Lou Pelletier said, “we were game to try a new approach.” But when the hospital laid out their plan to take Justina off all of her mitochondrial and pain medication, her parents balked.

    ------------

    From what I heard from a physician speaking about the case, Tufts Medical Center and Boston Children's have different "criteria" for diagnosing mitochondrial disorders.
     
  7. Martial

    Martial Senior Member

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    Does correcting methylation cure symptoms then? man... hard situation for her, I hope she gets the help she needs soon!
     
  8. biophile

    biophile Places I'd rather be.

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    Gag order, WTF?
     
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