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

Yann04

Yann04

Senior Member (Voting Rights)
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/


“What other illness gives the least attention to the most affected?” asked Clare Norton, in her devastating account of her daughter Merryn Croft’s existence before she died of Very Severe myalgic encephalomyelitis (ME) in 2017 at the age of 21.
Click to expand...

The Severe simply cannot sustain such advocacy. Not only are Very Severe patients in crisis neglected by Long COVID and ME organizations who should be mobilizing to come to their aid, Severe advocates stepping into the breach are put at risk.

Well-documented brutal hospitalizations of Very Severe patients Karen Gordon, Millie, and Carla Noaum in England in 2023 and 2024 showed that the dereliction of medical care suffered by Maeve Boothby-O’Neill is far from rare.

Yet U.K. ME organizations did not directly intervene to assist patients or their families fighting to protect their daughters from harm. Why? Surely highlighting these Very Severe crisis cases is the fastest way to mobilize improved care for everyone with energy-limiting chronic illness.
Click to expand...

Why does it feel like the only people willing to come to the aid of Severe ME patients in an emergency are each other?
Click to expand...

you would be hard-pressed to gather any detailed information about the impact of extreme energy impairment from the home pages of any of the major ME organizations.

There are no clear warnings to the Well about how bad post-viral disease can get; no facts about what the Mild and Moderately Sick might be risking if they push themselves beyond their energy envelopes; no easily accessible guidance for the Severe as to how best to endure the purgatory of living with extreme cellular energy starvation.
Click to expand...

On behalf of the Very Severe, we the Severe are appealing to you, the Mild and Moderate, to put pressure on our ME and Long COVID organizations to dedicate at least 25% of their annual attention (including budget and staff) to our plight. Help us demand that they campaign for online consultations, at-home palliative care and dedicated respite facilities, as well as an international emergency task force.

From our beds, we implore you, the Mild and Moderate, to do more to protect the human rights of the most vulnerable among us. Please hear our plea and make supporting the most Severe our community’s top priority.
Click to expand...

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:
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.
 
Surely highlighting these Very Severe crisis cases is the fastest way to mobilize improved care for everyone with energy-limiting chronic illness.
Click to expand...

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".
 
There are no clear warnings to the Well about how bad post-viral disease can get; no facts about what the Mild and Moderately Sick might be risking if they push themselves beyond their energy envelopes;
Click to expand...

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?
 
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
 
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, 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.
 
Beth said:
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
Click to expand...
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 said:
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).
Click to expand...
Yann I am so sorry you were treated this way. And that you and your parents were not properly warned and informed.
 
You must log in or register to reply here.
Back
Top Bottom