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

A(merican)M(edical)A(ssociation) COVID-19 daily video update: Patient, physician share their experiences as COVID-19 long haulers

https://www.ama-assn.org/delivering...ly-video-update-patient-physician-share-their

(Hornig speaking)

Oops. A man named David Teller.

(Hornig again, responding to what she hopes GPs should know about LC):

 

Uhhh... front page of tomorrow's Washington Post, folks. Below the fold but still, FRONT PAGE.

https://twitter.com/user/status/1317472367078068224




The full article was already posted from yesterday but here's the link: https://www.washingtonpost.com/heal...7b4af8-098f-11eb-9be6-cf25fb429f1a_story.html

 

Good to see though no mention of ME/CFS, or even post viral illness of any sort.

 

When business newspapers are more aware of medical history than some medical historians (looking at you Shorter and Henrik).

https://twitter.com/user/status/1317548413999812610


https://twitter.com/user/status/1317548416482856963


https://twitter.com/user/status/1317548430231801858


The promoted article is unfortunately paywalled but here it is: https://www.bloomberg.com/opinion/a...-hits-the-old-hardest-but-the-healthy-longest. Confirmed that it's freewalled, you can simply create a free account to read it.

 

Covid-19 Hits the Old Hardest, But the Healthy Longest

https://www.bloomberg.com/opinion/a...-hits-the-old-hardest-but-the-healthy-longest

 

Still no mention of enteroviruses! The Royal Free and the other epidemics which are the closest examples to long covid are still being ignored. No one is willing to admit it was not mass hysteria.

 

It might not be all bad. Curiously, she warns against the lumping of patients into one of the four catagories because they might be in several yet takes that to be an argument for keeping the diagnosis "broad", which is to lump all four togethor. But they then will "as research progresses, be able to, sort of, lift out of that [to] subcategories that are more specific".
Firstly, there seems to be some confidence that there will be progress and then there is this idea of a bureaucratic roadmap already being contemplated. I don't know what's going on over there and please shoot me down if this is too speculative but I'm wondering what would happen if Prusty's test does materialize before the end of the year and it does identify a "broad" group that includes those with ME/CFS, those with other post-viral conditions and those with "Long CoVID". This would give the bean-counters at the NHS the opportunity to push the reset button on the whole, sorry mess. It would mean, of course, cutting loose the ME/CFS sceptics. But, as she said, regarding their own, health care workers, being hit: "this is a burden of disease that people really do need to pay attention to". When a bureaucratic night of the long knives is in the offing, that's precisely the sort of anodyne words that is used.

 

Moved post

Sadly my sister in laws mum and sister both have long COVID. Her sister us a nurse who was diverted from normal.practise to help out earlier in the year. I'm ve forwarded @PhysiosforME info , workwell info and the dysautonomia video from another thread.
They are trying to get their heads around it.
How many others in Sweden ?

 

Moved post

It's so sad, everybody seems to know at least a few people who have long covid

Lots of people in Sweden with long covid are already getting somatisation diagnoses

A few of my pwME friends now have long covid too. Some of them are active in some of the very large Swedish (long) covid Facebook groups and/or on other social media, trying to help others by sharing their knowledge and experiences of living with ME, how to advocate for yourself etc.

Sadly, generally there seems to be a lot of resistance among the Swedish covid people against any ME related talk/info. A lot of prejudice and stigma, lots of openly negative comments and complaints about ME spokespeople. For example, many of them get very disappointed/annoyed when ME specialists and researchers involved in ME research (Jonas Bergquist, for example) are quoted in news articles about long covid. Some even accuse the ME researchers of "taking advantage of a very vulnerable patient group in order to get more money for their own [ME] research".

My impression so far from reading opinion pieces and discussions on social media is that the Swedish covid people are intentionally advocating and lobbying for exceptions just for themselves, firmly distancing themselves from pwME and others with similar problems regarding healthcare and Försäkringskassan (the Social Insurance Agency). "There is no evidence of any connection between long covid and ME."

(Edited to add Jonas Bergquist's name.)

 

First I'd like to declare something of a personal interest. Because of my situation, I've listened to way too much ABC radio and watched way too much ABC teevee over the years than is healthy for the sanity. But I would like to think I am exhibiting sound judgement in expressing my admiration for Our Natasha, the presenter of this program. She's been involved with several programs on Radio National (the more serious of the ABC networks), including presenting "All In The Mind" for several years, a program which encompasses philosophy, psychology and neurobiology; so she was the ideal person at the ABC, in this fan's view, to address the Long CoVID issue. And I was very happy to find that she didn't disappoint. The subliminal strings and angelic warbling towards the end might have been a little over the top but they did work, at least on me. Knowing that this program was broadcast across the country, from Bega to Broome, did almost make me a little teary; and that it was made gives me further hope that things really are changing at the ABC and in the narrative generally. I highly recommend this episode of "Science Friction". For a taste of the content, I have transcribed a passage, as follows:

 

Moved post replying to Mango's post.

I am greatly pleased, and relieved, that after an encounter with a virus that has left a considerable number of people in Sweden with post viral symptoms and effects, that these symptoms and effects have no relationship, and share no symptoms, with the post viral symptoms and effects that were caused by my encounter with a virus in 1987.

Coz if any of them did, that would suck.

Yippee for Swedish sick people - they may have something that destroys their life as they have known it, but at least it's not ME.

So that's all right then.

 

This is a really good program with input from the 3 UK docs.

Is there a transcript for all of it? @Colin

 

I don't believe so. The ABC did once have the money to do transcripts on many programs but it's pretty uncommon these days.

Glad you liked it. But I should acknowledge the obvious: that she had to talk to U.K. doctors because our own medicos have, luckily, not been so badly affected. So we can but hope that something comes of it all.

 

I googled one phrase from Colin’s piece and nothing showed up.

 

There is now a Long Covid entry on Wikipedia: https://en.wikipedia.org/wiki/Long_Covid.

Notable: the PVFS link redirects to CFS.

Also notable: still no entry for myalgic encephalomyelitis.

 

Long COVID: The debilitating after-effects of coronavirus

https://news.sky.com/story/long-covid-the-debilitating-after-effects-of-coronavirus-12104961

Quite a bit of discussion over how it's affecting health care services because too many physicians (and nurses, I assume but not said) are now sick. Talk about hitting yourself in the face. May not be friendly for small devices, it's basically a presentation with text interspersed.

Yes, that's literally the problem. The rage and frustration at a health care system completely failing is exactly aimed at the fact that they are getting this "support". Long Covid people are loudly complaining about exactly this. But these people are so completely stuck in an ideological bubble that they don't realize that the complaints are exactly about them.

Hence the complaints. So, no, more of that non-support is not the answer.

Indeed that is exactly why everything is broken, because people didn't listen to us. When does that start, then? Because there is no still no will for it, most efforts explicitly try to corner us off even though we could help a lot, especially in avoiding the same mistakes.

Discrimination, not stigma. Ongoing systemic discrimination, including from health care services. This is not a natural disaster or divine intervention, people choose to actively discriminate, by choice, and so it is by choice that the discrimination will have to end.

We do not, in fact, lead "very normal lives". This is the problem in a nutshell, people who claim expertise yet make absurd assertions like this.

It actually isn't and anyone confused by this process should step aside because plenty of people are easily capable of this already.

That's a choice that needs to be made explicitly. It has not. Hence, no, there is no "hope" here, we've been though this already. Do something.

Denial has consequences, sometimes far-reaching ones.

 

Hopefully this World Economic Forum article hasn't been posted already?
https://twitter.com/user/status/1317992990187638784


Only other reference to "post viral" that I recall:

 

https://news.sky.com/story/long-covid-the-debilitating-after-effects-of-coronavirus-12104961

I didn't know Dr Strain, but his claim that for CFS "most patients go on to lead very normal lives but they have to be wary that if they have a relapse they have to go back into the programme we run" seems difficult to support.

 

Long Covid curse: More than 1,000 struck down in London as under-50s unable to shake off syndrome

“They have very different starting points but one thing they talk about is fatigue. They talk about a post-exercise malaise. If they do any activity they are shattered for days, sometimes a week.

“They have to pace themselves. They would have done the school run and gone to the shops and to work. Now they can only do one of these things. There are people who talk about problems with ‘brain fog’. They don’t like meeting more than one person at once. They have difficulty in remembering names.

 

Weird there was a paper published recently that found the opposite, IIRC.

Completely ridiculous. When you work strictly out of old conclusions and discard everything that is said what are you even doing? They're just doing the MUS thing without thinking for a damn second. What do they even expect to happen here? This is what happens when you run a jobs program for people who can't do their actual job. Might as well serve those people astrology for all that this is relevant to the problem.

It's a website with generic information. "Use" is not really the right word here and the general opinion of the website is not exactly positive.