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

[Dolphin]

 

[Dolphin]

 

[Dolphin]

Mardani M. Post COVID Syndrome, Arch Clin Infect Dis. 2020 ; 15(2):e108819. doi: 10.5812/archcid.108819.
Free full text:
https://sites.kowsarpub.com/archcid/articles/108819.html

On a quick skim, this looks like it is mainly about ME/CFS.

However it looks frustrating e.g.

It should be noted that, for people experiencing ME/CFS, the CDC recommends vigorous aerobic exercise. It also notes that “Standard exercise recommendations for normal individuals may be damaging for cases with ME/CFS (1)”.

@dave30th's article is cited:

4. Tuller D, Lubet S. Chronic fatigue syndrome may hold keys to understanding post-Covid syndrome. 2020. Available from: https:
//www.statnews.com/2020/07/21/chronic-fatigue-syndromekeys-understanding-post-covid-syndrome/#:~:text=Chronic%20fatigue%20syndrome%20may%20hold%20keys%20to%20understanding%20post%2DCovid%20syndrome&text=Some%20survivors%20of%20acute,pain%2C%20headaches%2C%20and%20more.

 

[Shinygleamy]

Actually I saw a tweet yesterday by... either an OT or PT... asking whether they noticed that the mild cases are faring worse long term than many of the more severe cases that were hospitalized. Small anecdotal evidence but responses were basically affirmative.

Likely due to proper advice and follow-up, the difference with most mild cases being told to ignore symptoms, just "anxiety", and exercise your way out of it, return to work immediately, etc. LC cases that were initially mild are also less likely to get the kind of help at home that allows them to rest, after all it was just mild illness, how can you still be sick? Which could be the single biggest factor in causing a mass of long covid. Or not, nobody knows, but it sure would have been smart to... do things... anything really, so that we knew more than basically nothing.

What I've seen so far is people making assumptions and never being even interested in testing them. The assumptions are held as true no matter what. Incredible level of dysfunction.

Another similarity with M.E. I've seen people with M.E. who have severe physical symptoms early on, bedbound or in wheelchairs straight away, seem to recover better than the ones who seem less physically affected. Whether it's because their unable to do anything so rest at the crucial stages of the illness or whether it's the type of disease, immune process their having i don't know.

 

[rvallee]

The weekly news show 60 minutes will have a segment on long covid tonight. It's generally a pretty good investigative reporting show. I think it should make up most of the show.

https://www.cbsnews.com/news/covid-long-haulers-60-minutes-2020-11-20/

Interesting to know the size of some of those clinics:

Mt. Sinai Hospital in New York City created one of the first places dedicated to treating and studying these patients, called the Center for Post-COVID Care. There are 40 doctors working with the center – many of them specialists – who are focused on treating the symptoms as best they can and studying the cause behind them. Doctors there are calling this long-term illness "Post-acute COVID Syndrome," but patients who have it are referring to themselves as "Long Haulers."

Meanwhile the NIH took 3 years to do some light discussion with 23 patients. Pffft...

Seems about as good a confirmation that there's nothing so far that can differentiate LC from ME:

Up to 85% of the 1,000 patients the Center for Post-COVID Care has seen so far show no clear cause for their symptoms. Doctors are now racing to try to figure out why. Mt. Sinai is studying commonalities among patients it has seen, and enrolling patients in a high-resolution imaging study to scan the hearts, lungs and brains of so-called Long Haulers to determine what damage the virus may have caused.

If there was anything obvious, given the size of those efforts being far larger than what most ME research has done, it would have been found by now.

Except some very stupid ideas are still very much believed... after all this time... seriously still on the ridiculous PTSD, especially when it's obvious that most people in the US don't even take it seriously, especially in that 20-40 age group? Obviously that's just the special circumstances of NY speaking, it must have been traumatizing for many, but come on grow out of this fast.

Dr. Zijian Chen heads up the center at Mt. Sinai. It's a mystery, he says, and compares this pool of patients' to those who suffered illnesses from the fallout after 9/11. "This virus has many different effects on the human body… a kind of catastrophic event at one time that causes a large group of special patients… In a way, this is very similar to 9/11, but on a much grander scale," Dr. Chen tells Cooper.

It could take months or years before doctors figure out precisely what's causing this. One question doctors and researchers are looking into is whether the immune system might be contributing to some of these symptoms. Some patients' illnesses are being compounded by feelings of anxiety or depression - asked by Cooper whether the symptoms could be purely psychological, Dr. McCarthy, replies, "I have to [believe these patients]. Because I feel those symptoms too. And I don't think it's all in my head."

 

[Mij]

Another similarity with M.E. I've seen people with M.E. who have severe physical symptoms early on, bedbound or in wheelchairs straight away, seem to recover better than the ones who seem less physically affected. Whether it's because their unable to do anything so rest at the crucial stages of the illness or whether it's the type of disease, immune process their having i don't know.

I wouldn't say that I had severe symptoms, but I was unable to walk or stand for longer than 10 minutes at a time which kept me disabled, so I had to sit or lie down most of the time early on. After 9 months of intensive resting, I felt mostly 'recovered' and returned to work only to become more disabled after 3-4 weeks.

 

[Kalliope]

Manchester Evening News - Frontline medic who developed Covid in the first wave describes "advent calendar" of symptoms months later
Interview with an anonymous medic who suffers from long Covid.

...she thinks it could be years before experts start to properly understand the after-effects of the virus.

She is calling for better research into the conditions and more rehabilitation support for those suffering long-term symptoms.

“I think doctors are starting to recognise long Covid,” she says. “So many people were being told it was anxiety and being prescribed antidepressants.

“I feel like I have learnt a heck of a lot going through this. I know a lot more about ME now because some of the symptoms are very like what M.E. sufferers have.

“I’m lucky because I have a caring partner, but a lot of people have had partners walk out on them because they’ve been ill for so long.

“Friends have been very supportive, but I find it difficult to explain how I feel physically and mentally because going through it is hard to explain.

 

[Wonko]

It could take months or years before doctors figure out precisely what's causing this.

They've already had over a 100 years but chose not to.

At every point, they chose to do, worse than, nothing for their patients.

Rather than listen, believe, and study, the symptoms their patients were reporting, a decision was made, by medicine in general, that it was fine to not just ignore patients, but to......

Over 100 years....

Only one, amongst many millions of others, my life, the best part of it, 35 years, so far, is gone, because......

...and yet it's, again, 'we've never seen anything like it before, we'll study it and get back to you'

 

[Mij]

The weekly news show 60 minutes will have a segment on long covid tonight. It's generally a pretty good investigative reporting show. I think it should make up most of the show.

It made up 15 minutes of the program. I only caught the last long-hauler (a runner) at the end of the segment where she was doing leg resistance exercises.

 

[Colin]

Don't know if this is available yet

Heard this today around noon on ABC News Radio, only a few minutes long. There was some discussion of LC as a post-viral illness - she objected to the term on the basis that she had developed symptoms, such as loss of smell, only months into it - but no mention of ME/CFS, which made me wonder if they're trying to put us back in our box.

 

[Dx Revision Watch]

See this post:

Post Covid-19 Syndrome naming

https://www.s4me.info/threads/post-covid-19-syndrome-naming.16833/page-5#post-304123


for new information on SNOMED CT Synonym terms and Definitions associated with the January 2021 Concept additions:

1119303003 |Post-acute COVID-19

and

1119304009 |Chronic post-COVID-19 syndrome

 

[Dolphin]

The weekly news show 60 minutes will have a segment on long covid tonight. It's generally a pretty good investigative reporting show. I think it should make up most of the show.

https://www.cbsnews.com/news/covid-long-haulers-60-minutes-2020-11-20/

Interesting to know the size of some of those clinics:

Meanwhile the NIH took 3 years to do some light discussion with 23 patients. Pffft...

Seems about as good a confirmation that there's nothing so far that can differentiate LC from ME:

If there was anything obvious, given the size of those efforts being far larger than what most ME research has done, it would have been found by now.

Except some very stupid ideas are still very much believed... after all this time... seriously still on the ridiculous PTSD, especially when it's obvious that most people in the US don't even take it seriously, especially in that 20-40 age group? Obviously that's just the special circumstances of NY speaking, it must have been traumatizing for many, but come on grow out of this fast.

This was posted to a mailing list I am on:

On 60 Minutes tonight they featured a story on COVID long haulers who have symptoms much like ours. Unfortunately, they said "we've never seen anything like this before." Some have started a hashtag to raise awareness for ME/CFS. #wehaveseenthisbefore #60minutes #ME #MECFS with links to info. Please share on twitter and your networks if you can.


We also need to bombard CBS/60 Minutes with e-mails asking them to make a correction next week.

 

[rvallee]

The report: https://www.cbsnews.com/video/covid-long-haulers-60-minutes-2020-11-22/.

By itself it was excellent. That is, if this genuinely were an entirely new thing no one had ever seen before, which was explicitly said early on in the report, it would be excellent reporting. But the doctors interviewed made those claims, so it's hard to blame the show. They went to see experts, those experts gave them false information, because they themselves were also given false information. Oh boy.

There is a quick mention of post-viral fatigue early on, saying that medicine has known about it for a long time ("known", I guess) but never seen anything this bad. Which they did, and has been explained endlessly for decades, and is very frustrating. Because they are saying the exact same things we have been saying, unable to make the connection, because this is clearly more than just fatigue, which is the exact same things we have been saying for decades. It's like fractal failure, you zoom in and it's the same failure again and you zoom in some more and, again, also the same failure.

Fortunately the comment about 9/11 wasn't about trauma but about a large cohort that got sick roughly at the same time. No psychobabble here, which is good.

But one of the doctors there said the thing that is basically the whole problem in a nutshell, the whole failure. She has long covid and although she is able to work, it is all she is able to work. She was asked if this could be psychological and says that since she experiences those symptoms, she feels like she can clearly say it's not.

Which is incompatible with professional expertise. Medicine simply doesn't work if it requires the doctors to themselves experience every disease to be able to do their job. If what it takes is for only doctors and scientists with chronic illness to make the decisions and run the research programs and clinics, then so be it, because the normal way of doing things is clearly incompatible here. But something has to give.

The same failure going back centuries and medicine is still failing exactly as bad as it ever did, with a single exception: the virus' role is recognized. So centuries of failure, millions of lives sacrificed to an insane ideology and finally, the medical profession has managed to make the leap of being able to identify that a causative factor shared by all those suffering from a chronic illness is probably responsible for it.

Which is good, but this is far worse than progress being made one funeral at a time. It's millions of funerals and decades of negligence. And all of this simply to recognize what has been obvious to the point of blatant for decades. Absurd. Simply absurd.

 

[Kalliope]

Spotted this on Facebook shared by the Icelandic ME Association.
It's about a rehabilitation center in Iceland, who base their Covid-19 rehabilitation on previous experience from chronic fatigue, and therefore advice patients not to overdo things.

Recently, Heilsustofnun has received many requests for rehabilitation from people who fell ill with COVID-19 last winter and spring.

"Most of those who got the virus have varying degrees of chronic fatigue, that is, abnormal physical and mental fatigue. Many are still unable to work, more than six months after the illness. We are well aware of our experience in recent years in the treatment of chronic fatigue diseases and have the priority that people learn to control their energy and not overdo it, "says Birna and continues:

"Many people also have respiratory, cardiovascular or gastrointestinal symptoms, and these symptoms are often associated with autonomic nervous system disorders. People therefore struggle with varying degrees of repercussions that depend little on how serious the illness was at the time. Most people tolerate light heart training, but we follow these people very closely and are constantly finding out which treatments and tests are best for them. "


Fréttablaðið: Náin tengsl við náttúruna lykill að góðum árangri
google translation: Close ties with nature are key to success

 

[Mij]

 

[leokitten]

The report: https://www.cbsnews.com/video/covid-long-haulers-60-minutes-2020-11-22/

There is nothing about this report that didn’t make me upset. I mean even down to the demographics it’s exactly like ME/CFS. How much more identical to ME/CFS in symptoms, presentation, demographics, etc., does this have to be for medical community to wake up?

And like we’ve reported here before, the vast majority “up to 85%” do not have any obvious causes for their symptoms (they cannot find anything abnormal in any medical test).

Also, the autopsy findings are a potential big red herring. They are only looking at people who had severe disease and died, that isn’t the long COVID cohort.

 

[Jonathan Edwards]

It's about a rehabilitation center in Iceland, who base their Covid-19 rehabilitation on previous experience from chronic fatigue, and therefore advice patients not to overdo things.

Most people tolerate light heart training, but we follow these people very closely and are constantly finding out which treatments and tests are best for them. "

It is good to see a clinic that seems be careful. But even here - why are these people having 'light heart training'. I have taken part in all sorts of sports like skiing and sailing and walking all my life but never considered any need to undergo 'light heart training'. I just get out there and do what suits me.

It strikes me that we may live in a social context where deliberate exercise has become an addiction. When I was young nobody went to a gym. They were active if they wanted to be. Some people got overweight and never did anything active and probably had shorter life expectancy but nobody needed 'light heart training'.

In the last few years prescribing exercise and talking therapies have been seen as the solution to everything. Maybe the time has come to see just how fatuous this was.

 

[Mij]

The addiction to exercising became very evident when the gyms shut down. People were angry that they were unable exercise and demanded that they reopen gyms during an infectious pandemic. Many said it negatively affected their mental health.

I think it all started when looking fit became fashionable in the early 80's.

 

[rvallee]

I don't know what that's about but it sounds interesting enough to keep a watch on. No idea who's behind the account, though.

 

[Kitty]

It's about a rehabilitation center in Iceland, who base their Covid-19 rehabilitation on previous experience from chronic fatigue, and therefore advice patients not to overdo things.

It is good to see a clinic that seems be careful. But even here - why are these people having 'light heart training'.

I think terminology is part of the problem.

Like rehabilitation. An active process, e.g. physical therapy after an injury or surgery to help patients regain as much function as possible. It wasn't used for people who've been ill with a virus, and unless they've been in ICU and need to learn to walk and speak again, it still shouldn't be. We have much better words.

Convalescence. Recuperation. Passive processes that are enabled by clinical staff, rather than imposed by them. That take as long as they take.

If you use the wrong description, you end up with the wrong expectations. Patients will want a rehabilitation centre to do something for them; the staff will expect to be able to do something for them. And then we end up with nonsense like light heart training, because no bugger can think of anything else.