International: World Health Organization News (news relevant to ME/CFS, Long Covid and related conditions)

https://twitter.com/user/status/1359120075974979586

There’s a thread.

 

Hannah Davis is live tweeting on the WHO's Long Covid webinar.

Code:

https://twitter.com/ahandvanish/status/1359176839093223425

https://twitter.com/user/status/1359176839093223425


That group 2 sounds very familiar to me...

 

I didn't want to get up at 4 am to attend this!

 

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.

 

Not directly but this slide was mostly about ME research that could serve as a foundation:

https://twitter.com/user/status/1359179536848605185


And if I got this right the Dr Ryan mentioned here is the executive director of WHO, which certainly would change things:

https://twitter.com/user/status/1359187742006083586


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.

 

Fatigue is not a defining symptom for ME/CFS.

Maybe it's just me, but I want to distance myself from LC at this point.

 

Long covid: WHO calls on countries to offer patients more rehabilitation

https://www.bmj.com/content/372/bmj.n405

 

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.

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.euro.who.int/en/health-...of-the-pandemic-preparing-for-long-covid-2021

 

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:

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.

 

https://www.rte.ie/news/coronavirus/2021/0225/1199303-long-covid-who/

 

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.

 

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 .

 

Yes, since the eighties is the new way for me!

 

Medical politics, not medical science. We still need to advocate for the science.

 

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.

 

Reference for this was Perego et al. Dr Perego is well-known on Twitter for trying to separate long Covid and ME/CFS.

 

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.