‘There’s an attitude that M.E. doesn’t exist’, – father whose daughter died with the disease

Right at the end of her life um we had to fight for paliative care from me because there were people involved in the kind of bureaucracy that grew up around her that people who didn’t believe that Emmy was a real illness that they thought it was a fabricated

Illness or a mental health problem um that persists since I started writing about me and writing about me of the number of people who have contacted me to say exactly the same thing happens to them uh they they get referred to Social Services they’re in safeguarding investigations they people are

Threatened with having their children taken away from them I mean when you say fight for paliative care are you saying they didn’t believe she was in pain they didn’t believe she was she had a physical illness they believed it was a mental health problem

For years many doctors believed M.E. – the long-term neurological condition which causes debilitating pain and fatigue – was “all in the mind” of those who were suffering. Times reporter Sean O’Neill lost his daughter Maeve 2021 aged 27 after suffering from severe M.E.

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8 comments

  2. This was my experience with some – not all – doctors when I first started presenting with long-Covid in summer 2020, an unthinking assumption I must be fabricating or "simply" suffering depression even though I was clearly articulating somthing very different. Incredible that this still dogs M.E., decades after it had been a known illness. Terrible that you have to fight, inspiring that you nevertheless do.

  5. Most doctors laugh at me when I tell them I’ve suffered with this for years. There’s one doctor in the Royal Free in London who believed me, after many many blood tests. She finally concluded I had Chronic Fatigue Syndrome. It’s a number of factors which combine to make ME. I don’t suffer from it all the time, but now and then, I have to stay in bed for days because I can’t move. It can be terrifying but I’ve learned to go with it.

  6. យករបស់ហែងចេញឈប់រកស៊ីក្នុងតំបន់អញ
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    ក្នុង News អាឆ្កែបំផ្លាញជាតិ ចង់ថ្លៃថ្នូរ មកនិយាយខាងក្រៅ អាឆ្កែថោកទាប រកសន្តិភាព អោយប្រជាជន ជាតិ និង អន្តរជាតិ ដឹកនាំ អន់.អញ្ចឹង ដឹកនាំ American ដែរ 😂
    អញត្រូវកាតមនុស្ស ពូកែ ៗ ហើយ គោរព សិទ្ធិមនុស្ស មិនត្រូវការក្រុមអាអន់ៗ មកដឹកនាំពិភពលោកហើយ ជេរ ប្រមាថមនុស្សតាមអំពើ
    ចិត្ត ទៅ រកកាងារ ផ្សេងធ្វើទៅ ចេញពីរតំណែង របស់អញ អាអន់ៗ 😂 និយាយមិនឈ្នះអញ លួច ជេរអញតិច ៗ ធ្វើដូចអញខ្លាចវាអញអញ្ចឹង អាថោក 😂 អញគោរពច្បាប់ អន្តរជាតិ មានរឿងអ្វី ខ្លាច ពួក អាឆ្កែអត់ប្រយោជន៍ដូចពួកហែង

  7. កាឌួយម៉ែហែងនិងអត់ប្រយោជន៍
    អាថោកទាប អញអត់មិនមែនចិញ្ចឹមក្បាលពួកអាឆ្កែហែងបានប៉ុណ្ណោះទេ
    ឈប់ស្រីបាយអញ អញប្រជាជន

  8. it certainly exists. Though, in my younger years, as a support worker, I had one client who played on the ME status to such an extent that she made lives poorer for everyone around her. They said I was a breath of fresh air because I never fell for the play acting and would only support her when she was genuinely struggling. Years later, I saw her with a new support, slouching in her wheelchair. As soon as she saw me, she sat up straight and took control to support herself. I had to smile to myself.

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