International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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Sensitive topic - deaths & irreversible worsening after Severe patients hospitalised

Discussion in 'General ME/CFS Discussion' started by Luelma, Jan 27, 2018.

  1. Luelma


    A grim yet important question - do we have any numbers or knowledge of the number of ME/CFS deaths that have occurred after a patient has been hospitalised (and usually treated as psychologically ill or made to engage in treatments to correct their “faulty”
    beliefs - CBT and GET).

    Or any data on severe patients who have become irrevocably more ill after going into a hospital unable to meet their needs eg with me appreciate the effects of severe sleep deprivation when circadian rhythms have flipped?

    I know Sophie Mirza’s tragic death occurred following worsening that continued after her sectioning in hosptial and, of course, receiving no treatment for a very physical condition.

    And that US prize-winning journalist John Falk’s suicide occurred after being hospitalised when reactions to Clonazepam became too severe but once in hospital; doctors at the unit agreed he had ME/CFS but asserted it wasn’t causing his problems because they felt “ME/CFS patients can still get around and work”.

    I have a lengthy report that a CHC Nurse who came to conduct a DST on Monday should have read with numerous solid citations (Hummingbird Foundation etc) stating primary care hospitals are simply not set up to serve the complexity and severity of severe ME/CFS patients.

    When she asked me why I wouldn’t go to hospital, despite all these quotes, I replied that most ME/CFS deaths had occurred after irreversible worsening from a baseline that was already intolerable. However this was an educated guess. Is there any more evidence of deaths either from straight forward unbearable worsening, or, worsening so intolerable that it led to suicide after being hospitalised and the poor/devastating (non) treatment received there?
  2. RWP (Rest without Peace)

    RWP (Rest without Peace)


    I think this info might be helpful. I found this website info through PR, and it tells of 2 UK young women who died after being forced into institutional care against their (and their parents') wishes. I think 1 of them was the Sophie you referred to.

    I believe this link only shows the 1/2 hour version of the movie. I can't remember if the full program is free or not. It's been a few months.

    Sorry that you even have to think about this issue.

    RWP + PWR
  3. Runner5

    Runner5 Senior Member

    I wonder if they just decreased the dose on John Falk's Klonopin or if they discontinued.

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