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An international emergency task force is urgently needed for Severe Long COVID and ME crisis cases - Sam Pearce (Sick Times)

Discussion in 'General ME/CFS news' started by Yann04, Apr 5, 2025.

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  1. Yann04

    Yann04 Senior Member (Voting Rights)

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    Without one, Severe advocates are putting themselves at risk. It’s time for advocacy organizations to step up.
    https://thesicktimes.org/2025/04/04...ed-for-severe-long-covid-and-me-crisis-cases/


    IMO, important article, shame it overstates the biomedical evidence, but it doesn’t really matter since that’s not the article’s focus.
     
    Last edited: Apr 5, 2025
    Yann04, Apr 5, 2025
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  2. Utsikt

    Utsikt Senior Member (Voting Rights)

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    Reading that article made me feel sick. It describes my worst nightmare, one that I had a brief meeting with for a few months leading up to Christmas.

    I have to limit how much I read about the specifics of living with very severe ME/CFS (outside of the interactions on S4ME) in order to preserve my mental health. I’m used to being around severe illness, and I’m used to watching people I love slowly wither and die of horrible diseases. But it’s so much worse when it could be my reality as well.

    Maybe that’s part of the reason for why we talk too little about it. It scares us. And it’s too cruel and inhumane to actively engage with regularly. Unless you have no choice.

    I wholeheartedly support the proposal of requiring the ME/CFS associations to spend at least 25 % of their resources on the severe, very severe and extremely severe. We need to do better as a community.

    Thank you for sharing this.
     
    Utsikt, Apr 5, 2025
    #2
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  3. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights) Staff Member

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    The term "ME crisis" might be usefully encouraged. "Sickle cell crisis" is well understood and accepted in medicine. Similarly you might have "antiphospholipid crisis" though instead that is termed "catastrophic antiphospholipid syndrome".
     
    SNT Gatchaman, Apr 5, 2025
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  4. Hutan

    Hutan Moderator Staff Member

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    It is a big problem that we can't point to anything definitive on the issue of repeated PEM causing long lasting/permanent deterioration. We have lots of anecdotes, but the lack of evidence means any warning that respects evidence has to be given in words that aren't very compelling.

    A fence at the top of the cliff is better than the ambulance at the bottom, although of course safe care is desperately needed for people suffering with ME/CFS that is severe and worse. (Apologies that my comment is not focused on the latter, we need it all.)

    I think we need large cohorts of people with ME/CFS who are willing to do activity tracking, so that we can get a better sense of the course of the disease. Perhaps there also needs to be some recording of mental exertion. Answering this question (does repeated exertion cause prolonged/very long term worsening?) surely is urgent?
     
    Hutan, Apr 5, 2025
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  5. Beth

    Beth Established Member

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    So many thoughts on this, frustratingly brain wont cooperate right now, one thought I can get out though is its a bitter pill to swallow that no one is going to held responsible for my deterioration and zero help/warnings and 19 years wasted on what could at least been monitoring and info gathering, to start now I fear is beyond me
     
    Beth, Apr 6, 2025
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  6. Beth

    Beth Established Member

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    I think this is also why I'm so triggered when anyone says teenagers and children have better chances/outcomes because I was 15, on top of everything else the lack of belief lifelong severe/very severe could happen to me played a part, even though it was happening right before every ones eyes, recovery was going to happen no matter what severity I progressed to and never did
     
    Beth, Apr 6, 2025
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  7. Trish

    Trish Moderator Staff Member

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    @Beth, thank you for sharing your experience. I'm really sorry to hear the stats about young people having a better chance of recovery have been so misused against you, leading to your reality being disbelieved.

    I think this is a good illustration of why it's so important that the reality of what can happen in ME/CFS is not sugar coated, with pwME and their carers being given wrong information and the possibility of worsening not being made clear. The combination of disbelief and wrong treatment is so toxic.
     
    Trish, Apr 6, 2025
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  8. Yann04

    Yann04 Senior Member (Voting Rights)

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    Similar thoughts. Everyone around me thought I would get back to normal within a year or two, because I was young, so it didn’t matter how much we pushed me and obliterated my limits to go to the specialist appointments scheduled all the time.

    (And now here I am very severe having lost the ability to speak).
     
    Yann04, Apr 6, 2025
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  9. Utsikt

    Utsikt Senior Member (Voting Rights)

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    Yeah, this is brutal. All of my severe crashes the last year have been because others insisted that I kept up with a schedule that clearly didn’t work for me.
     
    Utsikt, Apr 6, 2025
    #9
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  10. Chestnut tree

    Chestnut tree Senior Member (Voting Rights)

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    Yann I am so sorry you were treated this way. And that you and your parents were not properly warned and informed.
     
    Chestnut tree, Apr 6, 2025
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  11. Chestnut tree

    Chestnut tree Senior Member (Voting Rights)

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    So sorry that happened to you. Very familiar. How much people would have a better quality of life if we were not pushed to do more than we can.
     
    Chestnut tree, Apr 6, 2025
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