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

[Kalliope]

The journal for Norwegian physiotherapists (Fysioterapeuten) has an article that recommends as much activity as possible for Covid-19 patients. Their source is the British The Chartered Society of Physiotherapy (CSP). The article says the amount of activity might vary from person to person and underlines the importance of rest between activity. But nothing on how to recognise PEM and what pacing is as a concept.

@PhysiosforME - I know you have a lot on your plate, and am not expecting you to do anything about the article in Fysioterapeuten, but tagging you in case you'd like to know of this.

Fysioterapeuten: Opptrening etter covid-19: Så aktiv som mulig
Google translation: Training after Covid-19: As active as possible

 

[Mij]

The video states that too much rest 'will slow your recovery and lose muscle mass increasing your risk of injury'. How ironic that they mention 'injury'. (this emoji has become my favourite on this forum).

I lost very little muscle mass over the course of many years of resting. Who are they addressing here? People over the age of 70?

 

[Mij]

Whether long haulers develop ME or a unique illness, it's only logical to advise zero exercise when they can't even climb 2 sets of stairs. Get up for a few minutes, walk around and stretch a little to stay limber. That's all I did for many years, and I didn't lose my level of cardio fitness when I started running again (which was a mistake of course).

 

[Arnie Pye]

Short and long term health effects of COVID-19

https://post.parliament.uk/analysis/short-and-long-term-health-effects-of-covid-19/


The UK medical system has been a breeding ground of quackery and promotion of pseudoscience for decades on this topic, but right now it is the fastest-moving to respond to the issue. So credit where it's due, hoping this ability to push everyone in the same direction can be used for good, by actually pushing in the right direction.

The bolded bit is evidently a problem. NHS guidelines are seriously, really, very, all-the-adverbsy bad at times.

The link you've posted has been removed, so obviously the fast-moving response has had the brakes applied.

 

[Shinygleamy]

Whether long haulers develop ME or a unique illness, it's only logical to advise zero exercise when they can't even climb 2 sets of stairs. Get up for a few minutes, walk around and stretch a little to stay limber. That's all I did for many years, and I didn't lose my level of cardio fitness when I started running again (which was a mistake of course).

Yes all I did for the first 10 years was get up and sit at the table for meals and go to the loo, the rest of the time i was lying down. Didn't end up with shrivelled limbs

 

[Shinygleamy]

The journal for Norwegian physiotherapists (Fysioterapeuten) has an article that recommends as much activity as possible for Covid-19 patients. Their source is the British The Chartered Society of Physiotherapy (CSP). The article says the amount of activity might vary from person to person and underlines the importance of rest between activity. But nothing on how to recognise PEM and what pacing is as a concept.

@PhysiosforME - I know you have a lot on your plate, and am not expecting you to do anything about the article in Fysioterapeuten, but tagging you in case you'd like to know of this.

Fysioterapeuten: Opptrening etter covid-19: Så aktiv som mulig
Google translation: Training after Covid-19: As active as possible

Ever since Norway took a step forward in recognising and researching M.E. it's become a serious war zone, as the bps lot try to shove the progress back in the box. It's a messy business.

 

[rvallee]

How can they say "there does not appear to be an association" when this hasn't been studied at all?

Somehow I'm fairly sure the reasoning is "well, this is clearly not just fatigue".

It's clearly a comment from someone who has no idea what ME is. I don't think much should be made of it, this is just the decades of BPS BS speaking about things they don't know, as usual. BPS is basically defined as "starting from the conclusion" so this is just the natural silly way of doing things.

 

[rvallee]

The journal for Norwegian physiotherapists (Fysioterapeuten) has an article that recommends as much activity as possible for Covid-19 patients. Their source is the British The Chartered Society of Physiotherapy (CSP). The article says the amount of activity might vary from person to person and underlines the importance of rest between activity. But nothing on how to recognise PEM and what pacing is as a concept.

@PhysiosforME - I know you have a lot on your plate, and am not expecting you to do anything about the article in Fysioterapeuten, but tagging you in case you'd like to know of this.

Fysioterapeuten: Opptrening etter covid-19: Så aktiv som mulig
Google translation: Training after Covid-19: As active as possible

This is so incredibly bad for the credibility of medicine and science. They come out with the worst possible advice, which most of the COVID patient population see through based on their experience, then also see that the ME community clearly know much more about this. It's absolutely not even close to be normal for a stigmatized patient community to GENUINELY know more about actual medical authorities. This isn't hypothetical, it's what's actually happening. Medical authorities are saying the worst possible nonsense while the weird stigmatized people have actual useful advice.

This will have very serious impacts on vaccination and disease control and prevention, will be used to beat people over the head about how modern medicine is clueless: "just look at the horrible advice they were telling the Long Covids, patients clearly know what's best", which isn't always true, this is a special case, but it looks extremely bad that it happens to be true about something very close to the need to vaccinate everyone ASAP once, if, we manage to develop one.

This should spring massive quick action. If only anyone working at medical institutions were actually paying attention anyway. Denial has consequences. Incompetence has consequences. There is still time to stop this but holy crap act quickly and massively, unroot the whole thing and salt the earth where it stood.

The advice clearly looks to be standard pneumonia rehab, not accounting for post-viral illness. It's important to be able to tell when advice applies or not, it's also important to be able to categorized things and tell different things apart. This is very bad.

 

[rvallee]

The link you've posted has been removed, so obviously the fast-moving response has had the brakes applied.

I get an internal server error so looks like just an IT problem.

 

[rvallee]

Another good edition of Run-DMC-does-COVID:



Has an interview near the end with the professor of exercise physiology, Rob Copeland, that I quote below. Still some concerns about why there is such obsession with the idea that exercise should be the end goal, so many people live healthy sedentary lives this is not necessary, but it's interesting to see the obvious internal struggle this is causing in someone who really wants exercise to be the answer but sees it clearly doesn't appear to be.

Do notice the bio. I generally agree that exercise is incredibly good for health (and fun) but this cult of 'exercise is a panacea' is way overdue for some reality adjustment. Good to see some people in the field are coming around to it.

 

[Arnie Pye]

I get an internal server error so looks like just an IT problem.

I've just discovered that this link works :

https://post.parliament.uk/short-and-long-term-health-effects-of-covid-19/

but there appear to be no rapid responses to it now. I don't get any server errors.

 

[Dolphin]

Italy’s Bergamo finds about 1/2 of covid-19 survivors haven’t fully recovered - The Washington Post

https://www.washingtonpost.com/world/2020/09/08/bergamo-italy-covid-longterm/

Italy’s Bergamo is calling back coronavirus survivors. About half to say they haven’t fully recovered.

By Chico Harlan and Stefano Pitrelli
SEPTEMBER 8, 2020

Just posting for general interest. Nothing in particular that sounds very ME-like. Fatigue gets a mention in a list of symptoms but there is no data given.

 

[Barry]

Italy’s Bergamo finds about 1/2 of covid-19 survivors haven’t fully recovered - The Washington Post

https://www.washingtonpost.com/world/2020/09/08/bergamo-italy-covid-longterm/

Italy’s Bergamo is calling back coronavirus survivors. About half to say they haven’t fully recovered.

By Chico Harlan and Stefano Pitrelli
SEPTEMBER 8, 2020

Just posting for general interest. Nothing in particular that sounds very ME-like. Fatigue gets a mention in a list of symptom but there is no data given.

I presume great care is needed re fatigue in this context. I imagine that if a person's lungs are not absorbing oxygen properly then that alone would provoke fatigue of some kind.

 

[rvallee]

The 2nd Body Politic survey is now open: https://www.s4me.info/threads/covid-19-patient-experience-survey-2.16813/.

Following up with our previous survey, we are launching our new study, which will be examining antibody testing results, wider and more detailed symptoms, including neurological, cardiovascular, systemic and beyond, as well as the impact on mental health. This study is sponsored by University College London (UCL), London, UK.

Body Politic published an excellent report in May, discussed here: https://www.s4me.info/threads/symptoms-of-covid-19.14692/page-2#post-260581.

 

[rvallee]

I've just discovered that this link works :

https://post.parliament.uk/short-and-long-term-health-effects-of-covid-19/

but there appear to be no rapid responses to it now. I don't get any server errors.

Looks like the URL was replaced. I changed it in my post. This one above works for me.

 

[Kalliope]

The Danish Broadcasting Corporation DR has an article about long covid today. Expert interviewed in the article is Lars Østergaard, professor in infectious diseases at Aarhus University. He talks about people not being able to perform at work. Many patients having problems with concentration and their memory and that this is particularly bad for young people. He and his colleagues have followed patients for 5-6 months after infection. Some improve a bit over time. He says he doesn't think anyone could imagine this kind of after effects.

The article says that Danish doctors are collaborating with doctors abroad (no further details) and that they are trying out a similar approach as with patients suffering from brain concussion. Giving the brain a break, which will work as rehabilitation of the body, according to prof. Østergaard. This includes staying still, taking a break from screens and trying to avoid sharp light.

Professor Østergaard has together with professor Jens Lundgren and the newspaper Politiken made a chart of late effects of corona which lists the following symptoms: muscle ache, loss of taste, loss of smell, concentration problems, headache and memory loss.

I find it a bit odd that fatigue is not included in that list.

DR: Uforklarlige senfølger af coronavirus: 'Ingen havde næppe forestillet sig det af den her karakter'
google translation: Unexplained late effects of coronavirus: 'Nobody had imagined anything of this nature'

 

[chrisb]

How can a professor of infectious diseases say "he doesn't think anyone could imagine this kind of after effects"? Unless, of course, he means that such symptoms could not be imaginary and must be "real".

 

[Rick Sanchez]

The article says that Danish doctors are collaborating with doctors abroad (no further details) and that they are trying out a similar approach as with patients suffering from brain concussion. Giving the brain a break, which will work as rehabilitation of the body, according to prof. Østergaard. This includes staying still, taking a break from screens and trying to avoid sharp light.

Professor Østergaard has together with professor Jens Lundgren and the newspaper Politiken made a chart of late effects of corona which lists the following symptoms: muscle ache, loss of taste, loss of smell, concentration problems, headache and memory loss.

I find it a bit odd that fatigue is not included in that list.

DR: Uforklarlige senfølger af coronavirus: 'Ingen havde næppe forestillet sig det af den her karakter'
google translation: Unexplained late effects of coronavirus: 'Nobody had imagined anything of this nature'

ME/CFS is so controversial after the Danish Health Authority lost their fight with the Danish politicians that ''experts'' now go out of their way to ignore ME/CFS when it comes to post-covid. A Danish expert even mentioned this explicitly in an interview. Not mentioning fatigue, which obviously has to be one of the most common symptoms for post-Covid patients was definitely (after my opnion) intentional.

Listening to international expertise is definitely good news for Danish ME/CFS patients though in the long run. Since many international long-haul experts who get media attention seem to champion the ME/CFS cause after having become aware of it.

 

[Kalliope]

ME/CFS is so controversial after the Danish Health Authority lost their fight with the Danish politicians that ''experts'' now go out of their way to ignore ME/CFS when it comes to post-covid. A Danish expert even mentioned this explicitly in an interview. Not mentioning fatigue, which obviously has to be one of the most common symptoms for post-Covid patients was definitely intentional.

Could that expert you listened to possibly be the other professor who made the chart of long covid symptoms; prof. Jens Lundgren?
I read an interview in the journal for the Danish Medical Association with his daughter, who is a doctor and struggling with symptoms following Covid, including fatigue.

I got the impression she is starting to improve. She says this experience has given her better understanding of patients with functional disorders. I don't think she includes herself into that patient group, though.

Ugeskriftet: Louise blev ramt af koronaens lange hale: "Vi læger har et heltekompleks"
google translation: Louise was hit by the corona's long tail: "We doctors have a hero complex"

I don't read the google translations before posting them. Do let me know if some passages are impossible to understand, and I'll be happy to try to help with some human translation.

ETA: Or did I misread your post? Did a Danish expert actually say that people go out of their way to not mention fatigue? I'd love to listen to that if you have a link.

 

[Rick Sanchez]

Could that expert you listened to possibly be the other professor who made the chart of long covid symptoms; prof. Jens Lundgren?
I read an interview in the journal for the Danish Medical Association with his daughter, who is a doctor and struggling with symptoms following Covid, including fatigue.

I got the impression she is starting to improve. She says this experience has given her better understanding of patients with functional disorders. I don't think she includes herself into that patient group, though.

Ugeskriftet: Louise blev ramt af koronaens lange hale: "Vi læger har et heltekompleks"
google translation: Louise was hit by the corona's long tail: "We doctors have a hero complex"

I don't read the google translations before posting them. Do let me know if some passages are impossible to understand, and I'll be happy to try to help with some human translation.

ETA: Or did I misread your post? Did a Danish expert actually say that people go out of their way to mention fatigue? I'd love to listen to that if you have a link.

Yes, it was him.

He basically said there's an awful lot of politics involved with ME/CFS which would be unfortunate to get mixed into the debate.

He also said

This is not a functional disorder, in the sense that late effects from covid are real observable changes in a person's physical and intellectual ability. I have followed several patients on top of covid with late post-complications and the important thing is that they recover but slowly. It's not stationary. It is not a chronic condition, it can just take an unbelievably long time to recover.

This was back in late July though, pretty arrogant to just assume the consequences are not chronic given we simply can not know because enough time has not elapsed yet.

The guy seems pretty clueless in general.

I have the full Danish quote here. In case you are interested.

Professor og infektionsmediciner Jens Lundgren fra Rigshospitalet mener ikke, at covid-patienter med senfølger lider af kronisk træthedssyndrom/ME:
"Ingen af de to begreber er veldefinerede eller velforståede i patofysiologisk (læren om fysiologiske ændringer, der følger med en sygdom, red.) forstand. Det her er ingen funktionel lidelse, i den forstand at senfølger fra covid er reelle observerbare ændringer i et menneskes fysiske og intellektuelle formåen. Jeg har fulgt adskillige patienter oven på covid med senfølger, og det vigtige er, at de kommer sig, men langsomt. Det er ikke stationært. Det er ingen kronisk tilstand, det kan bare tage ufatteligt langt tid at komme sig. Patienterne rapporterer om bedringer, selvom det kan tage hulens lang tid og frustrerer. Senfølger til covid er en unik ting, som vi er ved at forstå, og som vi skal undgå og hindre. Der er desværre flere spørgsmål end svar, når det handler om senfølgerne. Og så er der en masse politik om de to begreber, som vil være virkelig uheldigt at få blandet ind i det her".

ETA: Or did I misread your post? Did a Danish expert actually say that people go out of their way to mention fatigue? I'd love to listen to that if you have a link.

No, that's not what I meant, although I am extremely poor at phrasing myself, so probably been careless with how I phrased it.

It's more that Danish experts don't want to bring ME/CFS into the discussion