Jonathan Edwards
Senior Member (Voting Rights)
I doubt much funding will go into it -certainly not from major funding bodies. It might get ten million from some billionaire with a whole family with MCAS.
UK: PRIME Workshop 2: The Similarities and Distinctions between Long Covid & ME/CFS, 24th April, 2026 2-5pm GMT
- Thread starter Andy
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I doubt much funding will go into it -certainly not from major funding bodies. It might get ten million from some billionaire with a whole family with MCAS.
Jonathan Edwards
Senior Member (Voting Rights)
I listened to this.
Nothing very new I am afraid.
Danny Altman did not give any detail about Rosetta Stone plans - which look rather like a re-rumn of what has been done for ME/CFS over the last decade. He mentioned that rates of diagnosis of autoimmune disease like RA and lupus were about 3 times higher after Covid I think. I wonder if that tells us much with all the issue about ascertainment. What I don't think it tells us about is Long Covid, since LC is not RA or lupus but LC.
The Precision Life presentation seemed to be what we are familiar with. They seem to be leaping from genetic clues to treatment strategies rather too quickly for my liking but we have discussed that before.
Amy Proal seemed to be giving the standard 'ME/CFS specialist' folklore about every infection under the sun possiby being dormant and causing ME/CFS. She did make the point that symptoms seem to point to brain stem or thereabouts. I would put it more in hypothalamus but not so far away. She drew on a lot of very old data that we have been sceptical about.
Manoj Sivan talked about diagnostic criteria and PROMS for reasons that I was not clear. He claims that you do not need a controlled trial to tell if your treatment strategy works - just a consensus. I do wish people would raise the game a bit on that. He also mentioned that people 'on forums' had been complaining about treatment being under rehab! (In fact Caroline Dalton raise this and he took the opportunity to rebut the suggestion that you could do without rehab for anything.) To be fair, he agreed that it might be good for ME/CFS to be under a speciality so that clinical care could be linked in to research.
Nisreen Alwan was quite interesting on stigma and the need for a more sophisticated approach to diagnostic categorisation but there wasn't anything very new.
Nothing very new I am afraid.
Danny Altman did not give any detail about Rosetta Stone plans - which look rather like a re-rumn of what has been done for ME/CFS over the last decade. He mentioned that rates of diagnosis of autoimmune disease like RA and lupus were about 3 times higher after Covid I think. I wonder if that tells us much with all the issue about ascertainment. What I don't think it tells us about is Long Covid, since LC is not RA or lupus but LC.
The Precision Life presentation seemed to be what we are familiar with. They seem to be leaping from genetic clues to treatment strategies rather too quickly for my liking but we have discussed that before.
Amy Proal seemed to be giving the standard 'ME/CFS specialist' folklore about every infection under the sun possiby being dormant and causing ME/CFS. She did make the point that symptoms seem to point to brain stem or thereabouts. I would put it more in hypothalamus but not so far away. She drew on a lot of very old data that we have been sceptical about.
Manoj Sivan talked about diagnostic criteria and PROMS for reasons that I was not clear. He claims that you do not need a controlled trial to tell if your treatment strategy works - just a consensus. I do wish people would raise the game a bit on that. He also mentioned that people 'on forums' had been complaining about treatment being under rehab! (In fact Caroline Dalton raise this and he took the opportunity to rebut the suggestion that you could do without rehab for anything.) To be fair, he agreed that it might be good for ME/CFS to be under a speciality so that clinical care could be linked in to research.
Nisreen Alwan was quite interesting on stigma and the need for a more sophisticated approach to diagnostic categorisation but there wasn't anything very new.
@Andy, is there a recording available?
Building research infrastructure is a laudable aim, but I feel a bit uneasy that PRIME may be reaching out to a whole lot of people who probably should not be platformed. I hope it will not be a tick box exercise of 'catalysing 15 new research collaborations' with researchers close to hand, already in the ME/CFS and LC spaces, eager for any platform and possibly doing work that is counterproductive. The aim of 15 research collaborations is all very good, but if they are going to just be the same people saying the same things, it won't get us very far. For example, from what @Jonathan Edwards says about Manoj Sivan's presentation and what we know about him already, it will be a shame if he is part of any PRIME collaborations and planned international research consortia.
From AfME's website (which I don't think has a recording for the PRIME Workshop 1 held in January yet), the aim of PRIME is:
Building research infrastructure is a laudable aim, but I feel a bit uneasy that PRIME may be reaching out to a whole lot of people who probably should not be platformed. I hope it will not be a tick box exercise of 'catalysing 15 new research collaborations' with researchers close to hand, already in the ME/CFS and LC spaces, eager for any platform and possibly doing work that is counterproductive. The aim of 15 research collaborations is all very good, but if they are going to just be the same people saying the same things, it won't get us very far. For example, from what @Jonathan Edwards says about Manoj Sivan's presentation and what we know about him already, it will be a shame if he is part of any PRIME collaborations and planned international research consortia.
With a workshop topic that seemed to fundamentally misunderstand the nature of the Long COVID label, seeing Long Covid as a single disease (see my post on that upthread) and some odd choices of presenters, things are looking a little concerning. It's early days of course. I really hope that scarce funding will not be frittered away on more of the usual people saying the usual things. As a person with ME/CFS wanting answers, I value quality over quantity.
Jonathan Edwards
Senior Member (Voting Rights)
The webinar said it was being recorded.
Yann04
Senior Member (Voting Rights)
The whole framing sounds very muddled and disappointing. As long as long covid is treated like some mystical illness and not an umbrella term for all sorts of things happening after COVID I don’t think we’ll be able to make much advancement. Even RECOVER seems to have somewhat learned from their lessons and is subtyping now.
Andy
Senior Member (Voting rights)
Andy
Senior Member (Voting rights)
Jonathan Edwards
Senior Member (Voting Rights)
I agree. As long as these are treated as mystery diseases that need diagnostic biomarkers so that you can put them in convenient pigeonholes progress will be minimal. I think Alwan appreciated that but she is not going to work out the pathomechanics. The Precision Life approach tries to get there but their sales pitch on personalised therapies is hard to believe in.
V.R.T.
Senior Member (Voting Rights)
Agreed, it will be beyond disappointing if the rehab people manage to coopt this project. Everything they are involved with they attempt to bend to their own ends.
Sometimes, when you're really unlucky, you can get both the pan and the fire. And sometimes there's also someone back there turning up the heat all the way to max.
We are that unlucky. It's just astounding how badly we are failed, it rivals what one would expect out of a corrupt nepotistic decaying aristocracy, one that would actually manage to suggest getting out the violins to distract from all the burning and looting.
Utsikt
Senior Member (Voting Rights)
Government: We need to make these sick people healthier.
Rehabbers: We can make them healthier.
Government: How?
Rehabbers: Healthier people do more and report that they feel better. We’ll instruct the sick people to do more and reassure them that they should feel better.
Government: Great! Here’s a blank cheque. Continue until their health improves.
Rehabbers: We can make them healthier.
Government: How?
Rehabbers: Healthier people do more and report that they feel better. We’ll instruct the sick people to do more and reassure them that they should feel better.
Government: Great! Here’s a blank cheque. Continue until their health improves.
Kitty
Senior Member (Voting Rights)
Also:
Government: We need to get sick people back to work.
Rehabbers: We can stop them believing they're sick.
Government: How?
Rehabbers: We tell them they're not sick and get them to spend every day answering questions on apps. Then you've got proof they do admin every day, and can find them fit for work.
Government: Great! Here’s a blank cheque.
Government: We need to get sick people back to work.
Rehabbers: We can stop them believing they're sick.
Government: How?
Rehabbers: We tell them they're not sick and get them to spend every day answering questions on apps. Then you've got proof they do admin every day, and can find them fit for work.
Government: Great! Here’s a blank cheque.
hotblack
Senior Member (Voting Rights)
Great, thank you so much!
I’m trying to keep up and not read more than above , but when describing the ‘important distinctions’ I was under the impression that PEM being required and the tighter definition theoretically makes me/cfs more ‘specific’/ less heterogenous vs long covid which can be ‘anything post-covid’ and includes eg the lung or heart issues.
And the length of time people have had it for is another issue. Unless something has changed recently actually on the ground most with me/cfs have it a long time before getting it on their papers do to speak whereas due to the nature of being signed off work and having clinics for it LC was 4-6weeks wasn’t it ?
There is a very significant difference between noting ‘some have PEM’ (and it not being as defined so is it PEM) and me/cfs and where things should be every time someone defines and describes it to ensure it isn’t being put across as if it’s just some fatigue+persistent symptoms melee - which would be taking ourselves backwards to what needed to be broken away from
Eg the days where people got diagnosed with fibro or cfs depending on what the physician tended to prefer of the two not their constellation of main symptoms fitting one or the other and burying us as just chronically fatigued ill people who have lots of different symptoms instead of focusing on the key pattern that joins the group together as a proper defined condition.
I’m not happy with this describing above for this context to be frank