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People with ME have been ignored for far too long, Sajid Javid, The Times (UK), 2024

Discussion in 'General ME/CFS news' started by JohnTheJack, May 10, 2024.

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  1. JohnTheJack

    JohnTheJack Moderator Staff Member

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    People with ME have been ignored for far too long
    Sajid Javid

    The Times (London) 10/05/2024

    A once active, happy person, full of life, is now bedridden, too exhausted to eat and barely able to speak. What happens when you have a disease doctors can’t diagnose? Many with myalgic encephalomyelitis (ME) have faced this question for decades.

    Since the NHS was founded 76 years ago, huge advances have been made in combating disease and illness. But those living with ME have been left behind. Little understood and often misdiagnosed, this complex condition causes debilitating symptoms including prolonged fatigue, dizziness, muscle pain and brain fog. For some, it can begin after a battle with illness. For others, the start can seem unexplainable.

    For decades, patients have been routinely dismissed. Families were told that their loved ones suffered from a psychological condition or “yuppie flu”....

    (Paywalled)
    https://www.thetimes.co.uk/article/people-with-me-have-been-ignored-for-far-too-long-gv2nhq28m


    Excellent column in Times this morning.
     
    JohnTheJack, May 10, 2024
    #1
    AliceLily, John Mac, Spartacus and 24 others like this.
  2. Sasha

    Sasha Senior Member (Voting Rights)

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    Thanks, @JohnTheJack. Can you say what the upshot of the article is? Is Javid calling for any kind of specific government action?
     
    Sasha, May 10, 2024
    #2
    sebaaa, Missense, alktipping and 12 others like this.
  3. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    SNT Gatchaman, May 10, 2024
    #3
    Missense, alktipping, EzzieD and 15 others like this.
  4. Sasha

    Sasha Senior Member (Voting Rights)

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    Thanks, @SNT Gatchaman!

    I hadn't heard about this:

     
    Sasha, May 10, 2024
    #4
    John Mac, alktipping, EzzieD and 9 others like this.
  5. Andy

    Andy Committee Member

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    Andy, May 10, 2024
    #5
    alktipping, Peter Trewhitt, MeSci and 5 others like this.
  6. Sasha

    Sasha Senior Member (Voting Rights)

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    Sasha, May 10, 2024
    #6
    Solstice, Wonko, alktipping and 5 others like this.
  7. Sean

    Sean Moderator Staff Member

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    What happens when you have a disease doctors can’t diagnose?

    Can't define, diagnose, treat, or even manage. They can't even reliably meet the minimum standard of simply not making things worse.
     
    Sean, May 10, 2024
    #7
    Solstice, obeat, EzzieD and 20 others like this.
  8. Wits_End

    Wits_End Senior Member (Voting Rights)

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    "Third, to ensure better care for patients, every NHS trust needs to implement the latest ME support guidelines. Troubling reports suggest that only one in four trusts are complying. Ministers must investigate this and urgently address what is going wrong."

    25%? That's really worrying.
     
    Wits_End, May 11, 2024
    #8
    Solstice, Deanne NZ, RaviHVJ and 8 others like this.
  9. NelliePledge

    NelliePledge Moderator Staff Member

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    I’m surprised it’s that many
     
    NelliePledge, May 11, 2024
    #9
    Solstice, Ash, rvallee and 12 others like this.
  10. Fizzlou

    Fizzlou Senior Member (Voting Rights)

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    25% believe they are complying
     
    Fizzlou, May 11, 2024
    #10
    Solstice, RedFox, Ash and 11 others like this.
  11. NelliePledge

    NelliePledge Moderator Staff Member

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    Right having a somewhat tweaked CFS clinic isn’t complying. Notably i doubt there’s any ICB that’s in compliance with NICE guidelines as far as severe ME
     
    NelliePledge, May 11, 2024
    #11
    Solstice, RedFox, Ash and 11 others like this.
  12. rvallee

    rvallee Senior Member (Voting Rights)

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    It's not a fair framing, though. In most cases, it's "won't diagnose".

    We've seen it plain stated so many times, "we don't like to diagnose people with this". I have seen far too many people saying their MD agreed that they meet the criteria, but they won't put the diagnosis down, usually with some BS reason, either of 1) there are no treatments or 2) this won't help you.

    And of course there are no treatments in large part because the problem is covered up by not diagnosing it.

    Won't, not can't. It's a matter of will, rather than ability. Which, wheeeew holy irony, the projection is just off the scale.
     
    rvallee, May 11, 2024
    #12
    Solstice, Sean, SNT Gatchaman and 7 others like this.
  13. rvallee

    rvallee Senior Member (Voting Rights)

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    I assume none of them really are complying, but 1/4 report that they do anyway. In some cases it may be somewhat close, but always missing the mark. It's not as if we can trust any of the information they publish. In fact, we literally can't trust anything they say without independent verification.
     
    rvallee, May 11, 2024
    #13
    Solstice, Sean, Fizzlou and 8 others like this.
  14. Sean

    Sean Moderator Staff Member

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    In fairness, some doctors don't want to formally diagnose ME/CFS because they are trying to protect their patients from the shitty deal that label brings with it.
     
    Sean, May 12, 2024
    #14
    Solstice, Hutan, Amw66 and 10 others like this.
  15. Ash

    Ash Senior Member (Voting Rights)

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    Yeah, my GP when I got sick kept me on EBV, PVS as long as he could.
     
    Ash, May 12, 2024
    #15
    Solstice, Sean, Binkie4 and 3 others like this.

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