Dolphin
Senior Member (Voting Rights)
There’s a thread.
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International: World Health Organization News (news relevant to ME/CFS, Long Covid and related conditions)
- Thread starter Simon M
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There’s a thread.
I didn't want to get up at 4 am to attend this!
Andy
Retired committee member
I don't know Dave, where is your commitment to the cause????
(And before anyone misunderstands me, that is very much a joke.)
I didn't see/listen to it all, and as with these types of things there was a lot of talking that didn't really say much, at least in my opinion. And the interesting parts were also the frustrating parts as, from my perspective, they talked about an emerging cohort of ME patients without naming it as such. I will say though that during her presentation, Hannah Davis acknowledged the ME patient community a number of times - from memory she was the only one to do so.
Although I had a quick flick through her slides and I couldn’t see any mention of ME on them even on the PEM slide.I don't know Dave, where is your commitment to the cause????
(And before anyone misunderstands me, that is very much a joke.)
I didn't see/listen to it all, and as with these types of things there was a lot of talking that didn't really say much, at least in my opinion. And the interesting parts were also the frustrating parts as, from my perspective, they talked about an emerging cohort of ME patients without naming it as such. I will say though that during her presentation, Hannah Davis acknowledged the ME patient community a number of times - from memory she was the only one to do so.
rvallee
Senior Member (Voting Rights)
Not directly but this slide was mostly about ME research that could serve as a foundation:
And if I got this right the Dr Ryan mentioned here is the executive director of WHO, which certainly would change things:
As let's be honest here, almost everyone motivated towards ME and chronic illness research in general has personal reasons for it, usually family members. We literally depend on who gets sick and how badly for any progress and it's very likely to be true for LC. Ugh.
Not convinced by the weight of the words that they won't be left behind. We are told the same things. It's way too easy for medicine to just move on, it's basically the norm.
It certainly rings hollow while continuing to do just that to the far larger population already suffering from chronic illness. Some people find it worthwhile to say "let's not repeat the mistakes of ME/CFS", but I haven't seen anyone say that we should actually fix them. Which I'm not sure how it's supposed to work but whatever, I don't think anyone has thought that far yet.
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Andy
Retired committee member
Long covid: WHO calls on countries to offer patients more rehabilitation
https://www.bmj.com/content/372/bmj.n405
rvallee
Senior Member (Voting Rights)
Long covid: WHO calls on countries to offer patients more rehabilitation
https://www.bmj.com/content/372/bmj.n405
Not much, just a recap of the WHO panel but it has useful quotes from Hannah Davis about PEM, which rehabilitation programs still mostly doesn't even know about.
No one has yet argued what "rehabilitation" would even look like, it's been nearly a year of such attempts, the clinics have overwhelmingly a bad reputation and are considered at best useless, sometimes more harmful if they are far away and make excessive demands of patients.
Medicine is still fully stuck on the rehabilitation record. Despite there being no understanding of what needs to be rehabilitated and despite the failure of nearly a full year of attempting this. It's as if medicine simply does not pay attention to anything they do unless there is clear binary dead/not dead outcome that can't be argued philosophically.
https://www.bmj.com/content/372/bmj.n405
Not much, just a recap of the WHO panel but it has useful quotes from Hannah Davis about PEM, which rehabilitation programs still mostly doesn't even know about.
No one has yet argued what "rehabilitation" would even look like, it's been nearly a year of such attempts, the clinics have overwhelmingly a bad reputation and are considered at best useless, sometimes more harmful if they are far away and make excessive demands of patients.
Medicine is still fully stuck on the rehabilitation record. Despite there being no understanding of what needs to be rehabilitated and despite the failure of nearly a full year of attempting this. It's as if medicine simply does not pay attention to anything they do unless there is clear binary dead/not dead outcome that can't be argued philosophically.
Oh, would that be bad? Because there are already far more such cases and no one who can fix this is doing anything about it. I would really like to hear more about why this would be bad yet even though it is already the case there is simply no motivation to do anything about it.
https://www.rnz.co.nz/news/national...mics-help-plan-world-s-recovery-from-pandemic
A International Science Council project - ISC Covid-19 Scenarios Project has recently been launched. The panel of international science leaders include representatives from the World Health Organisation, the United Nations Office for Disaster Risk Reduction, an advisor to US President Joe Biden's Covid-19 advisory board and other microbiologists and epidemiologists.
A good initiative, but there is no mention of Long Covid in the brief article. Might be worth finding out who is involved and ensuring they understand the Long Covid risk, and need for coordinated research.
(I've also noted this project on the New Zealand thread, as two well-known New Zealand scientists are involved in the project.)
A International Science Council project - ISC Covid-19 Scenarios Project has recently been launched. The panel of international science leaders include representatives from the World Health Organisation, the United Nations Office for Disaster Risk Reduction, an advisor to US President Joe Biden's Covid-19 advisory board and other microbiologists and epidemiologists.
A good initiative, but there is no mention of Long Covid in the brief article. Might be worth finding out who is involved and ensuring they understand the Long Covid risk, and need for coordinated research.
(I've also noted this project on the New Zealand thread, as two well-known New Zealand scientists are involved in the project.)
Dolphin
Senior Member (Voting Rights)
rvallee
Senior Member (Voting Rights)
Weird how all the stuff that wasn't possible to do for us is perfectly possible and in fact being done quite naturally because it's the normal thing medicine does when it's decided that a problem is worth solving.
Medicine did not solve ME as a choice. This could have been done decades ago. Instead we got maximum disaster, still ongoing, even as the thing that was said to be impossible is happening naturally and obviously.
No technical obstacles. It's all will, or lack thereof.
That it is completely naive of the context is not encouraging for everyone involved, still manages to make baseless claims based entirely on the invalid definition of "CFS" as just fatigue, which at this point is completely indefensible to maintain:
Medicine did not solve ME as a choice. This could have been done decades ago. Instead we got maximum disaster, still ongoing, even as the thing that was said to be impossible is happening naturally and obviously.
No technical obstacles. It's all will, or lack thereof.
That it is completely naive of the context is not encouraging for everyone involved, still manages to make baseless claims based entirely on the invalid definition of "CFS" as just fatigue, which at this point is completely indefensible to maintain:
No evidence to back this up, this is mostly false and speculative, "seems to" is not based on actual expert understanding here. But with people like Greenhalgh involved more of this is guaranteed, they can't stop playing ideological politics with millions of lives.
Dolphin
Senior Member (Voting Rights)
Jonathan Edwards
Senior Member (Voting Rights)
I don't think anything will actually be done.This is just a soundbite.
If anything is done it will be the same as for ME - trials of exercise, multidisciplinary clinics with psychologists.
Nobody of relevance has decided anything is worth solving. It has just been decided to sound like it. That is the new way.
alktipping
Senior Member (Voting Rights)
soundbites are not actually new here in England i have been aware since the eighties that media perception is more important than doing the actual hard work of getting anything done .
Jonathan Edwards
Senior Member (Voting Rights)
Yes, since the eighties is the new way for me!
Medical politics, not medical science. We still need to advocate for the science.
rvallee
Senior Member (Voting Rights)
There has indeed mostly been talking, with not much walking happening yet. So far nothing actually useful has yet to come out of this, pending however the NIH spend that fortune. The UK's NIHR effort is too tiny to even count, frankly.
All shows how much "attention" is worth: a whole thesaurus' worth of bupkis as long as it's poorly informed. But the attention is about 1,000x the size ME ever got in total and sometimes, sometimes, it's even described competently, including neurological symptoms that aren't somehow dismissed as irrelevant. So there's that new ground being broken, surface-deep anyway.
But the issue has not yet met the heavy BPS resistance that will try to sabotage it all, a wounded animal with nothing to lose. The real test is where money counts, the size and scope of disability and the likely failure of the early research at finding anything by looking in familiar places. Will that interest survive? Likely will all depend on the size of advocacy, long haulers are still way too hopeful about how medicine actually works.
So is almost everyone until reality grinds that hope down. Things will improve if we make them improve, but its a long road not a sprint. In many areas of life you just have to keep working toward it to make it happen. Advocacy is no different.
You are right that changing attitudes is a big part of it. There is an opportunity here for ME advocates as well as long Covid advocates. This is a time to convince even more long haulers that their life may improve faster if they start advocating now. Research takes years, and the sooner more is done the faster it all moves.