Severe people may hold answers to Long COVID. They must be included in research. (The Sick Times)

ahimsa

ahimsa

Senior Member (Voting Rights)
Severe people may hold answers to Long COVID. They must be included in research.
The Sick Times said:
Several participants at the second RECOVER-TLC workshop, held on September 9–10, 2025, raised concerns that many trials currently in progress, particularly those requiring extensive in-person visits, exclude people with severe Long COVID.

Advocates urged the program to develop decentralized, home-based options and warned against “mildwashing,” or the tendency to focus primarily on less severe cases.

RECOVER-TLC needs to address this gap directly by creating study designs that allow home- and bedbound people to participate. These people represent the most clinically urgent population, yet they remain absent from the evidence base that guides care. Their exclusion is not a procedural oversight but a scientific failure, and correcting it is essential for any program committed to understanding the full spectrum of the disease.
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After giving several examples of research projects that have included more severe patients, they made these comments:
The Sick Times said:
These studies remind us that inclusion is not a logistical burden but a measure of a study’s integrity and vision. Making research accessible to the most severely affected is not about lowering standards; it is about meeting the true standard of science itself, understanding every part of the spectrum we aim to heal.

This principle is not new to medicine. In genetics and complex disease research, scientists often apply what is known as the extreme phenotype strategy: they focus on the most severe, resistant, or atypical cases to uncover mechanisms that may be hidden in milder forms. Studying those at the farthest ends of the spectrum amplifies biological signals and accelerates the discovery of causal pathways and potential drug targets.
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Good glad this topic is coming up and sensible language to get the seriousness of the issue across is being developed

Particularly given the political-seeking manifesto rhetoric too many seem to have trained bigoted laypersons and even milder pwme into repeating suggesting ‘we have to focus on those who’ve recovered (whether they actually had proper me/cfs or not - and are just assuming ‘they had a near miss’ rather than were by statistics never going to get it unless they had the extra hit of a virus or overwork others get).

I mentioned the bit in brackets because that recovery rhetorical manifesto is reversing logic often because those who never got it (near miss) actually didn’t have ‘the thing’ that causes it to tip over happening to/at them or didn’t have the cause because they didn’t have whatever is going on in the body or genes. Those who did get it do - so studying those who didn’t fully get the illness isn’t the helpful thing they try and bonbard with words to suggest.

They aren’t people with stage 4 cancer who recovered with no after affects but often those going round saying they never got it so should be prioritised over those who are ill with the condition because there must be something superior in what they did or they hold the clue. Yet with no research confirming what stage 4and getting worse involved - so how can they assert that?? It’s faulty logic without research design being focused to make it so because literature confirmed a specific group ‘would have ended up there’

And cancer isn’t studying people who don’t get cancer cos they did a mindfulness course over studying people who actually definitely had it.

I hate that I have to lost another serious illness because me/cfs has such disrespect normalized and has logic turned back to front parroting normalized by those industries that target it - I’m sure some try eg with cancer but I’d guess the difference is with that illness enough bystanders tell those doing it off and support patients as they see thru it and because there is other research etc.

It’s one of the worst slights which has directly been incited by those pushing certain commercial salesy programmes and bps ideologies via conning new patients whilst they are overwhelmed because they often are new to the illness so are learning and don’t have adjustments from those around them. And want to believe it’s just something they can control or avoid by signing up to that and behaving

. But what they are really turned into is people going round suggesting those made more ill are somehow failures by what they are happy to parrot without noting that’s caused normal ly by others peoples behaviour and lack of support directly due to and incited by this rhetoric ‘they wouldn’t need it if they tried harder’ instead of being the ones with the illness and so obvious are the subjects research requires to be externally valid for me/cfs rather than whatever said courses wanted to weaken criteria to include then use drop outs/treatment as the filter (only those who get to the end because it doesn’t harm them or they were more well anyway ‘count’) . So to me it’s pure disability bigotry rhetoric.
 
bobbler said:
Good glad this topic is coming up and sensible language to get the seriousness of the issue across is being developed

Particularly given the political-seeking manifesto rhetoric too many seem to have trained bigoted laypersons and even milder pwme into repeating suggesting ‘we have to focus on those who’ve recovered (whether they actually had proper me/cfs or not - and are just assuming ‘they had a near miss’ rather than were by statistics never going to get it unless they had the extra hit of a virus or overwork others get).

I mentioned the bit in brackets because that recovery rhetorical manifesto is reversing logic often because those who never got it (near miss) actually didn’t have ‘the thing’ that causes it to tip over happening to/at them or didn’t have the cause because they didn’t have whatever is going on in the body or genes. Those who did get it do - so studying those who didn’t fully get the illness isn’t the helpful thing they try and bonbard with words to suggest.

They aren’t people with stage 4 cancer who recovered with no after affects but often those going round saying they never got it so should be prioritised over those who are ill with the condition because there must be something superior in what they did or they hold the clue. Yet with no research confirming what stage 4and getting worse involved - so how can they assert that?? It’s faulty logic without research design being focused to make it so because literature confirmed a specific group ‘would have ended up there’

And cancer isn’t studying people who don’t get cancer cos they did a mindfulness course over studying people who actually definitely had it.

I hate that I have to lost another serious illness because me/cfs has such disrespect normalized and has logic turned back to front parroting normalized by those industries that target it - I’m sure some try eg with cancer but I’d guess the difference is with that illness enough bystanders tell those doing it off and support patients as they see thru it and because there is other research etc.

It’s one of the worst slights which has directly been incited by those pushing certain commercial salesy programmes and bps ideologies via conning new patients whilst they are overwhelmed because they often are new to the illness so are learning and don’t have adjustments from those around them. And want to believe it’s just something they can control or avoid by signing up to that and behaving

. But what they are really turned into is people going round suggesting those made more ill are somehow failures by what they are happy to parrot without noting that’s caused normal ly by others peoples behaviour and lack of support directly due to and incited by this rhetoric ‘they wouldn’t need it if they tried harder’ instead of being the ones with the illness and so obvious are the subjects research requires to be externally valid for me/cfs rather than whatever said courses wanted to weaken criteria to include then use drop outs/treatment as the filter (only those who get to the end because it doesn’t harm them or they were more well anyway ‘count’) . So to me it’s pure disability bigotry rhetoric.
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The sickest thing about ME/CFS is that the illest people are often the people who took all the bullshit advice and declined badly from it. Then they are held up as examples of 'people who didn't take the advice because deep down they don't want to recover'.
 
ahimsa said:
Severe people may hold answers to Long COVID. They must be included in research.


After giving several examples of research projects that have included more severe patients, they made these comments:
Click to expand...
This is really important and should be campaigned on more. I'd not heard of the phrase extreme phenotype strategy but the principle is common sense and it is shocking that more studies don't focus on the severe. It may be that signals only transiently visible in mild pwME are more often or even constantly present in severe people. Severe feels a bit like someone turned on my absolute worst mild/moderate crashes as a permanent baseline.
 
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