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

This is in German, a whole documentary on LC with different severities.

A young hockey player that never had any symptoms whatsoever & then was dianosed with Covid myocarditis in a routine checkup. He was put on hold for 2months from training (and any exertion) before being allowed to go back.

An ICU nurse that ended up in her own ICU herself with severe Covid. She had breathing problems afterwards even though her lung capacity was fine. She was put into rehabilitation where they said many patient's lungs seem ok but have problems with deep breathing. She fully recovered and went back to work.

A radiologist with a rather mild illness developed fatigue, severe cognitive issues ("struggle to do math at a 2nd grade level, only can read big headlines but not full articles") and something that sounds like PEM (getting worse after doing too much). She was in rehab with exercise. Seemed to get better and was sent home. Crashed and was diagnosed with "CFS". Her brain scans were clear.

From minute 34, there's a part about CFS with ME researcher Prof. Scheibenbogen.

I think this shows how severity of symptoms, organ damage and long term outcome dont have to correlate at all.

The producers of the docu had asked our health Minister Jens Span for an interview, he replied that there is no reliable data yet if "post covid syndrome" is a distinct entity at all.

At this point I cant help but to think this is deliberate denial to prepare for BPS framing/turn down future claims. The data about the phenomenon LC has been out for >6mnths now, our media has picked up on it.

Why is there no massive PR campaign?

 

The documentary is suprisingly watchable with automatically translated subtitles, btw, at least the first 5 minutes. So that's an option for anyone who's interested, although I doubt there is much in there that most people on here don't already know.
Really not excited over the fact that I can understand the comment section, though. I find it funny how right-wingers are suddenly deeply concerned about "the children", once their own freedoms are at stake.

 

I just finished watching a Facebook live video about long covid in children, as discussed by four Hungarian doctors, three paediatricians and one infectologist. This is the first in-depth discussion of long covid I've found here. (Sorry, it won't embed it.)



It started well (as opposed to another video I watched about a week ago, where it was supposed to be one of the main topics but they almost said nothing about it), they mentioned that we have to differentiate between long-term sequelae caused by organ dysfunction and long covid syndrome itself, which means persistent symptoms without any clear medical reason. They mentioned respiratory, heart issues and problems with the central nervous system, and named chronic fatigue syndrome (this is the only term in use here) and depression as examples and went on to talk about potential diabetes and metabolic problems.

About long covid they said this is something new, something not in the textbooks, they have to learn it now themselves. They also mentioned that children and young people are affected too, and it is independent of the initial symptom severity.

Then the infectologist started to talk about functional exhaustion, chronic fatigue syndrome, that it is a serious problem and these people need rehabilitation.

They mentioned something that I've also noticed in my group: many children with long covid have severe headaches, this seems to be a very typical symptom (but also muscoskeletal pain, gastrointestinal issues, fatigue, etc). This seems to be much more common in children than multisystem inflammatory syndrome.

Then they went on to talk about how social isolation contributes to the persistence of the symptoms, and psychosocial stressors exacerbate it.

One paediatrician was also a rheumatologist and said, it is normal to perceive stronger pain after psychological or any other stressor, this is how the body adjusts after a stressful event, and the feeling of the pain is real. Then another paediatrician said social pain exacerbates it too and they amplify each other. Just because they didn't find a medical reason for the pain, the feeling itself is real.

As for therapy, telling people they are not really ill is not a solution. They need empathy, they need to be led out of this bad cycle. Psychological guidance may be a good solution, because people (here they were talking about adults too) can't reintegrate due to their raised temperature, high pulse, etc. A combination of psychology, physiotherapy and if necessary due to organ issues, medications will help. There is a chance that the underlying problem is not enough motivation and depression. They also said they also shouldn't miss it if there is some serious medical issue going on on the other hand.

And here they accidentally cut off the live video and will upload the end at a later time.

Well, I'm not that impressed. These were quite young doctors, I was hoping for something else.

 

interesting to hear from Hungarian doctors and their take on Long Covid, so thank you for making a summary. I understand you're not very impressed, though..

 

Canada's 'long-haulers' without family doctor need primary care: medical association

https://www.ctvnews.ca/health/coron...ed-primary-care-medical-association-1.5318564


I'm not sure which way to take this but I don't think it's meant in a good way:

Really not looking like medicine is up to the task here. The dysfunction is just too much.

And, no, primary care is not an option in Canada, with or without money, not without a massive paradigm shift that acknowledges decades of failure. I technically have a primary care physician. She is the one who made me aware of CFS, what it's called here. She diagnosed me with CFS. She is of no help whatsoever beyond that and I haven't bothered making an appointment in 3 years, literally no point. The services are not accessible and fully fragmented. My father has had to do all the work in the end, primary care is a dead-end for chronic illness.

Lack of a primary care physician is a problem in the Canadian health care system. It is not however the solution here, even those of us who technically have access to a GP are completely shut out of the system. By design.

 

https://twitter.com/user/status/1364138276819529730

 

NIH: NIH launches new initiative to study "Long Covid"

NIH: Open funding opportunities

 

The best spin I can put on this is that Collins' tweet was aimed specifically at people with Long Covid and he didn't want to "complicate" things by introducing the subject of ME/CFS. In the United States you have to assume that the average person has never heard of "ME / myalgic encephalomyelitis" and that the small percentage that has heard of "CFS / chronic fatigue syndrome" are, for the most part, likely to still think of it as psychosomatic (thanks to nearly 40 years of (not always so) benign neglect by the CDC).

If this was the intention, it seems to have failed - as virtually all of the comments on this tweet are from people asking why he didn't mention ME/CFS.


The worst spin I can put on it would be that those in charge would prefer to not to bring up ME/CFS just now because that would naturally lead to questions like, "You've known about this since at least 1984? What have you been doing about it?"

"Uh, well, we, uh, did some first class research into morning cortisol levels and, uh, childhood sexual abuse - and we've been spending about $5 million a year on it... well, only since 2012.. but still..."

 

https://www.gets.govt.nz/MOH/ExternalTenderDetails.htm?id=23802052

I'm having some very mixed feelings here. Nice to see the Ministry of Health showing some interest in long Covid. But but but.

We've had what, something like 2000-2500 people directly affected by Covid in NZ of whom a few hundred unfortunates may end up with long Covid. And they get a longitudinal study? As an immediate priority no less. While the "the short and long term impacts for people with confirmed or probable" ME remain of no interest whatsoever, never mind there are at least ten times as many of us and that we've been waiting for decades.

Mind you, I rather suspect the poor long Covid folks are just going to be given a few questionnaires asking about their levels of anxiety. I hope they get better treatment than that but I wouldn't want to bet on it.

 

Video interviews (in Swedish) with a Swedish doctor who has long covid. She's answering questions from readers about post viral syndromes, facts and unknowns, dysautonomia, POTS, and the connection to ME, among other things.

Experten svarar på dina frågor om långtidscovid
https://www.expressen.se/tv/nyheter...lisa-noren-svarar-pa-fragor-om-langtidscovid/

Dina frågor om långtidscovid – med Lisa Norén
https://www.expressen.se/tv/nyheter/dina-fragor/dina-fragor-om-langtidscovid-med-lisa-noren/

(I haven't watched them myself yet, but they have been getting positive comments from some of my pwME friends).

 

What does Dr Pope do of the recent studies on Long Covid showing that some of the most prevalent symptoms of LC are those of ME, including post-exertional malaise?

At this point it seems pretty clear that Long Covid is getting recognized and funded while being thoroughly distanced from ME. Those who are operating this distancing don't mind gaslighting us using the same language as the BPS/MUS crew ("harassment"), even though pwME have been providing support to pwLC from the get-go. It's nauseating.

We will be left to pick up little bits of positive things that come for LC, but even that will take advocacy. And I suspect it will take work to undo "LC isn't ME".

 

We found out pretty early in this that Rachel Pope was firmly against acknowledging any sort of link between ME and a portion of LC sufferers, so largely she is best ignored. Yes, it's sad and infuriating that someone with her views is, apparently, influential in the UK LC world but she's no worse than any other sort of ME denier and denigrater, so we'll just need to carry on as normal.

 

Sometimes I think medicine is etch-a-sketch art. You can create whatever picture suites you at any given moment, then erase and start over with an altogether different picture.

If history stands for anything, I suspect that is what will happen with LC. Once the pandemic is truly in the rear view mirror, medicine at large will relegate LC to ME/CFS and chronic Lyme status.

Acknowledging LC "forever" would open too many unanswered questions about the latter two.

 

I believe she listened in on the call and could ask questions, possibly as a patient representative, but I'm uncertain that she has a much of an influence on political deciders.

I have been telling myself the same, but there is a notable difference as a result of the pandemic: LC seems too widespread to be neglected. A significant amount of money has been allocated to Covid research including longitudinal studies, which may protect LC from being relegated to fringe status. That being said, the world -- health systems first and foremost -- will be happy to move on from Covid once the pandemic settles (i.e. herd immunity through vaccination and vanishing hospitalization numbers).

 

So no one is expecting the line, worldwide, of 'we've spent billions researching it (something else we made up) but we found nothing of interest, that would help us explain, or treat it. So, according to all our evidence, it doesn't exist. Have you tried being yelled at by a drill sergeant and being forced to exercise 23 hours a day - that might help but if not we have nothing else to offer, go away, stop annoying us and get back to work.'

Coz I is.

ETA - sorry if I'm not particularly upbeat - still suffering from the fire door fiasco, and PEM can make me a tad negative.

 

I think there is still scope for it to get better (though of course that doesn't mean it actually will). There appears to be more than one type of Long Covid, e.g., with and without organ damage, with and without persistent viral infection, and these groups still need to be described properly through good quality research.

It's not this that frustrates me, it's the fact that there does appear to be an ME/CFS-like cohort and too few people are seeing it as an opportunity to help both groups.

Well, except the BPS tribe, that is, who clearly recognised it as such immediately.

 

I give it a year before the Long-covid clinics start to close or are absorbed into IAPT MUS services.

 

If they avoid any mention when it counts, I don't see how they would not avoid working the issue entirely during the entire research program. This is what lack of courage looks like. No leadership to be found, as is tradition in medicine. The denial is clearly strongly motivated, it's not an oversight.

Some of it is bound to help no matter what, but if there is an explicit avoidance of the issue it will be very little and it will also hurt long haulers, as by numbers this is what most of them have (or related co-morbidities anyway). The main issue is of wasting most of that funding and using it as the ultimate sledgehammer to say "we tried spending a fortune, it's impossible to solve, now go away forever".

So far so very bad, frankly. Turns out the massive incompetence and dysfunction seen in EBM is basically universal throughout the entire profession. Ugh. We are in the worst possible hands.

 

She is still stuck on the "ME is fatigue and nothing else", sadly. Hard to compare to something with a fully distorted picture of it.