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Guest blogger for Norwegian ME Association: "Opted Out"

Discussion in 'General ME/CFS news' started by Kalliope, Apr 6, 2018.

  1. Kalliope

    Kalliope Senior Member (Voting Rights)

    The Norwegian ME Association offers its website for patients and others who wish to share their ME-related story in a blogpost. The authors can choose to be anonymous if they wish.

    Today came a truly heartbreaking story about a severe ME-patient fighting to get some help. But even in an area where there actually is an ambulant ME-team, the patient did not receive the help which was obviously needed.

    After a long time without medical care, the patient managed to get to a private doctor and was diagnosed with another disease as well; cancer.

    - With a blood test, I am upgraded from paria to VIP patient. I get all the medical attention I can wish for. The municipality lists services I can get - none of them adapted to serious ME. The outside world is sympathetic. As if it is now I'm afraid and not two years ago.As if it's only now I need help. As if this is the beginning of the match and not the end.

    Gjesteblogg: Bortvalgt
    Google translation Guest blog: Opted out
    Joel, Lidia, Manganus and 30 others like this.
  2. chicaguapa

    chicaguapa Senior Member (Voting Rights)

    It's good to see this written down in a way that doesn't trivialise cancer as I find it hard to get across how I feel about the difference in how the two illnesses are treated. It's not just in the medical profession either. I have come across this attitude at school.

    When my daughter stopped going to school, we offered to speak at an assembly about ME so her school friends could understand what was wrong with her. The school ignored our offers, as in they didn't even respond to say no. We've had no support from the school in 2 years, just threats to involve children's services. Fast forward 18 months and a young lad in her year gets cancer. They held an assembly to explain to the students what was wrong with him. His mum says they've been nothing but supportive towards them. Parents react to the mum's posts on Facebook with (quite rightly) empathy, horror and donations on her fundraising page are off the scale. No prizes for guessing the responses to my similar posts.

    We have a meeting at the school after the holidays and one of the questions I want to ask them is why the difference in support and attitude? We've shown Unrest in the school and not a single member of staff came to watch it, including the head. What more can we do so that parents like us don't feel like they've made us feel?
    Hutan, TiredSam, Solstice and 18 others like this.
  3. Allele

    Allele Senior Member (Voting Rights)

    Oh, @chicaguapa, that's just awful. It's hard to fathom how deep and insidious the brainwashing has been. Good on you for keeping the pressure up.
    It's the modern-day equivalent of shunning, and it must stop!
    Hutan, chicaguapa, Skycloud and 6 others like this.
  4. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

    So sorry @chicaguapa, that is so awful that they would not even attend Unrest. Little by little we will chip away at the stigma hugs xxx

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