News about Long Covid including its relationship to ME/CFS 2020 to 2021

Podcast from nov. 13th
FiveThirtyEight What We Know About 'Long COVID'

On this week’s episode of PODCAST-19, we do a deep dive into “long COVID,” which is when people who’ve survived COVID-19 continue to experience a variety of symptoms for weeks, or sometimes months, after their acute illness. What’s causing this disease to linger for so many people? And what will happen to our health care system if a lot of people are sick for years to come with a hard-to-define illness?
https://twitter.com/user/status/1328024153702666246

 

Replying to post #2644:

“There are lots of reasons for breathlessness. A fair number of Covid patients have myocharditis, inflammation of the heart muscle. Exercise can cause damage in those cases. People need proper investigations before treatment like physio is prescribed. My concern is if health services focus only on rehab and psychology services, they are missing the chance to medically treat people and help them get better.”

I'm glad that they are bringing awareness to the negative effects of exercise (GET), but I'm afraid they won't understand that PEM is not from heart inflammation/damage if all tests return "normal".

 

In April they were already offering CBT/GET straight up? Odd. I was actually curious about that and surprised not to have heard about it. Would be interesting to know on what basis.

Uhhhh... what?

 

https://twitter.com/user/status/1328037366695682053

https://twitter.com/user/status/1328040665851305984

 

I wonder if this special treatment will be any better than described in the discussion we had earlier with the Long Island long COVID clinic and others.

 

Gerald Coakley is a low profile provider of firm BPS thinking, a proactive PACE apologist, even when the academic figleaves had been castrated. He is privately marketed as a fatigue specialist.

He also speaks about pwME in caricatured derogatory terms when he feels comfortable.

That is my first hand experience before being broken in two, when I believed that I was subcontracting to an expert and he believed I was sufficiently educated to speak freely about his opinions of many pwME when I asked about the PACE controversy (before I knew that I had to DIY the detail).

 

I’m also really worried that now that we are seeing promising initial vaccine efficacy data that by maybe sooner than expected summer/fall 2021 COVID will start becoming the past instead of the present, and that the interest and news cycle will just forget about long COVID.

Research will suffer, long COVID patients will suffer, and most likely ME/CFS will suffer because of this once in a 100 year missed opportunity to prove why we need much higher research funding and to show the world that yes we were telling you this all along, we didn’t make this shit up, we got a bad viral infection outside of a pandemic (so we really didn’t know what was going on and many didn’t go to the doctor and just thought we would get better) and this shit happens you are stuck with ME/CFS for life.

 

Has anyone seen any hard data or literature discussing PEM in long COVID? Like prevalence, etc.

 

Still mostly unacknowledged so far. Only bits of misunderstanding here and there as inability to exercise or, usually, deconditioning. Only the patient community recognizes it, actually discusses it quite competently thanks to the information available from the ME community and it being pertinent to their lived experience.

Honestly I doubt that any such research will happen until a huge paradigm shift, or until ME researchers have funding to do so. It's just completely misinterpreted so far and only ME-aware researchers and clinicians understand it.

 

https://twitter.com/user/status/1327549893804777473

 

Post-COVID clinic planned for Montreal to study long-term effects of disease on patients

https://montreal.ctvnews.ca/mobile/...term-effects-of-disease-on-patients-1.5188549


Thankfully, it appears focused on research and understanding, rather than trying to brute force a rehabilitation approach without theoretical understanding.

... even for years... even for decades... even for a lifetime...

 

https://twitter.com/user/status/1328381521326088193

 

https://www.dublinlive.ie/news/health/coronavirus-ireland-man-who-permanently-19283027

There are 2 other interviewees. One is doing 2.5 hours of physio a day. I very much hope he doesn't have an ME-type condition.

 

This isn't the best thread for this but it is the only reference I can find for this company at the moment.
I think there is a thread somewhere on the forum about a survey they were running.
Anyway, the results are out now:

https://btl.science/blogs/news-1/ch...uY29tIiwgImtsX2NvbXBhbnlfaWQiOiAiTGFSSlZWIn0=

COI: I have no financial or other connection with this company

 

SNOMED International have released Pre-Release "Long Covid" terminology which will be available in the January 2021 release of the International Edition of SNOMED CT.

See posts #89 and #90 in this thread:

https://www.s4me.info/threads/post-covid-19-syndrome-naming.16833/page-5#post-302835

 

Some may remember CNN host Chris Cuomo talking about his experience with Long Covid symptoms. His brother is the governor of New-York, who just posted this:

https://twitter.com/user/status/1328528595384459264


Not bad, though still severely underrepresents the severity, not helped by limiting it to the usual, yes... chronic fatigue. Ugh. The video tries to remind people that death is not the only concern about the pandemic, the declining mortality rates are starting to motivate many to think that it can run through unchecked and we will be fine.

But there is a problem here, especially by misrepresenting just chronic fatigue, that it may actually cause people to take it even less seriously, largely because anyone asking their physician about this would be told it's nothing to worry about. It's hard to get people to take a ruinous eventuality seriously when the experts themselves dismiss it as trivial.

Hopefully there is more than just this advisory, because it's basically guaranteed to change exactly zero minds without serious reform in the system of health care, which will never appropriately place in context something it has badly misrepresented for decades.

 

It's a few days since I read this but I don't think there's anything new in it for people who have been following things closely. But perhaps it might be of use to somebody who wants a summary.
https://twitter.com/user/status/1328839599628677121

 

From Kenya: