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

[Sly Saint]

Is the ME/CFS Community About to get Larger?
March 23, 2020
Blog by Dr Courtney Craig
https://www.drcourtneycraig.com/blog/2020/3/23/is-the-mecfs-community-about-to-get-larger

 

[lycaena]

I don't know if the differenciation between ME/CFS and Post intensive care syndrome will be that difficult. PICS patients will be older, ME/CFS often starts at an younger age.
There will probably lots of different long term consequences of covid-19.

One of these consequences could be self resolving post viral fatigue after "mild" covid-19 in younger patients which can be confounded with ME/CFS especially by people who think ME/CFS is just fatigue.

When people with post viral fatigue without PEM do GET it will not hurt them. Maybe they will get the feeling that they do something important for their health even if it's just natural recovery.
It could be similiar to post cancer fatigue. Sometimes cancer (treatment) seems to trigger ME/CFS but most of the time it's "just" fatigue which will go away with time.

 

[Leila]

Yes I agree, PICS and ME would be easy to differenciate with clear criteria. But not all researchers are using them and tar everything fatigue related with the same "CFS" brush

That's why I'm worried how psychiatrists are already digging their claws into this.

I hope "our" researchers are faster.

 

[lycaena]

Yes I agree, PICS and ME would be easy to differenciate with clear criteria. But not all researchers are using them and tar everything fatigue related with the same "CFS" brush

That's why I'm worried how psychiatrists are already digging their claws into this.

I hope "our" researchers are faster.

I am worried, too. Covid19 could be the chance to take post viral illnesses more seriously but instead it could also result in more attention seeking by BPS proponents.

this tweet seems sensible at first glance but could just mean you can claim post covid patients were anxious perfectionists with an unhealthy personality and lifestyle before Covid19:

at least he admits that's not always your choice:

and I don't know if you can say not resting after viral illnesses triggers ME/CFS. I guess it's rather - if you are unlucky to get ME/CFS after Covid19 or other acute deseases not resting will make it worse?

 

[lycaena]

terrible post corona CFS leaflet

 

[rvallee]

In case anyone was wondering whether the NHS would fumble further or actually get their act together? It's maximum fumble, obviously. From the "psychosocial response group". At least this unit drops the pretense of having any to do with biology or medicine.

https://www.hacw.nhs.uk/download.cfm?doc=docm93jijm4n1877.pdf&ver=3608

Some people may go on to develop Chronic Fatigue Syndrome (CFS), sometimes also called Myalgic Encephalitis (ME), which is a condition which affects people in different ways. The main symptom is persistent fatigue (tiredness) and exhaustion which can be severe and disabling.

Then the rest is the usual drivel, boom & bust, CBT, GET and all that crap.

One notably bizarre sentence:

Many people feel tired and exhausted after they have had a virus.

Also during. I mean, especially during. It's basically the same exhaustion that doesn't leave. But it has to be framed as weariness, a different kind of fatigue afterward. Even though it's endlessly explained otherwise. But they never listen to a damn thing.

Speaking of laziness:

Three main ways you can improve the management of chronic fatigue are:
1. Pacing and activity management
2. Graded exercise

I guess the 3rd should have been yell STOP at your symptoms?

Literally none of the advice has any evidence whatsoever. It's just the usual baseless claims like this:

CFS/ME may relate to longstanding problems such as depression, chronic worry, perfectionism or low self esteem.

If only there were some sort of process by which we can turn a bunch of "may be"s and put them to some sort of rigorous test that can actually remove the ambiguity of whether they "may" or "may not". Especially on a "may relate" claim.

 

[Jaybee00]

In a case report published this week in the New England Journal of Medicine, Chinese doctors described a patient with severe COVID-19, clots evident in several parts of his body, and immune proteins called antiphospholipid antibodies.

A hallmark of an autoimmune disease called antiphospholipid syndrome, these antibodies sometimes occur as a passing response to an infection. But sometimes they linger, causing dangerous blood clots in the legs, kidneys, lungs and brain.

 

[rvallee]

Pretty good (and free to read) article from New Scientist: Could the coronavirus trigger post-viral fatigue syndromes?

COULD the coronavirus sweeping around the world have a second illness following in its wake? We may expect to see an outbreak of post-viral fatigue syndromes in some people who have had covid-19, according to some researchers.

Viral infections have previously been linked to problems with long-term fatigue symptoms. For example, chronic fatigue syndrome (CFS), which is also called myalgic encephalomyelitis (ME), sometimes occurs after viral infections. People who have CFS experience extreme fatigue and a range of other symptoms, such as pain and sensitivity to light, but the condition is poorly understood.

So is it possible that the coronavirus could trigger similar fatigue syndromes? There are hints from the related SARS virus that this may happen. After the SARS outbreak of 2002 to 2003, some people in Toronto, Canada, who were infected were recorded as experiencing fatigue, muscle weakness and sleep problems up to three years later.

Includes quotes by Wessely, because of course, but, surprisingly, he chose to keep his usual tropes quiet and stick with what is actually known:

Other viruses are known to trigger CFS after infection, such as the Epstein-Barr virus, says Simon Wessely, former president of the Royal College of Psychiatrists. “We don’t know about corona, but I think it will lead to many, many cases of post-infective fatigue syndrome.”

“There is a long history of infections as a trigger but other factors contributing to longer term disability,” adds Wessely. “If the virus is found to enter the brain, this might increase the risk.”

“It’s quite likely that some people will be developing a post-viral fatigue syndrome, which may then lead into an ME/CFS-like illness,” says Charles Shepherd, a medical adviser to the ME Association, a UK patient charity. “What happens to people after the acute infection is clearly something that needs to be researched.”

It may be a long time before we know more, as people need to have symptoms for at least six months before being diagnosed with CFS or ME, says Mark Guthridge at Deakin University in Melbourne, Australia, who has ME himself.

 

[MEMarge]

Copied post
Very interesting article about recovery from COVID being very variable.
https://www.nytimes.com/2020/04/13/opinion/coronavirus-recovery.html

 

[Mij]

https://n.neurology.org/content/neurology/early/2020/04/09/WNL.0000000000009455.full.pdf

 

[Mithriel]

“There is a long history of infections as a trigger but other factors contributing to longer term disability,” adds Wessely. “If the virus is found to enter the brain, this might increase the risk.”

This is Wessley's long standing idea thay ME is caused by a virus that people get over but being an invalid helps them emotionally or they mistake normal deconditioning so become afraid of exercise. That will be why they want to get people exercising as soon as possible so they won't give in to the weaknesses we did.

Note again that he is saying something that means one thing but his readers will take a different meaning from it.

 

[lycaena]

advice for post viral fatigue (not ME/CFS) without GET, it's more like - try activity step by step as your recovery progresses? I am not sure you need this advice (because that's how natural recovery intuitively works) but the notion to take it easy and rest seems helpful

 

[Mij]

https://n.neurology.org/content/neurology/early/2020/04/09/WNL.0000000000009455.full.pdf
View attachment 10622

Guillain-Barré Syndrome:
https://www.nejm.org/doi/full/10.1056/NEJMc2009191

 

[Sly Saint]

advice for post viral fatigue

Yes the document itself seems good advice (only skimmed it) but unfortunately its not what his tweet implies
"Recovering from coronavirus COVID19?
Get back to your daily activities & reduce the chance of developing long-term fatigue problems."

Just hope that people read the info and not just the tweet.

 

[hinterland]

Someone on the Zero Hedge financial blog, going by the name Tyler Durden, has collated a number of Reddit threads reporting ongoing long-term symptoms following Covid-19.

https://www.zerohedge.com/health/yo...gony-symptoms-lasting-nearly-two-months-after

"Clicking through the rest of the bulleted threads above reveals similar experiences shared by a disturbing number of people who have been grappling with COVID-19 with no end in sight."

Footnote: Who or What is 'Zero Hedge':

Zero Hedge or ZeroHedge has been described as a libertarian or right-wing financial blog,[4][5][6] presenting staff-written articles and aggregating news and opinions from external sources.[7] Zero Hedge, per its motto,[a] is bearish in its investment outlook and analysis, often deriving from its adherence to the Austrian School of economics and credit cycles.[8] While often labeled as a financial permabear,[9][10] Zero Hedge is also seen as a source of "cutting-edge news, rumors and gossip in the financial industry".[11]

 

[NelliePledge]

advice for post viral fatigue (not ME/CFS) without GET, it's more like - try activity step by step as your recovery progresses? I am not sure you need this advice (because that's how natural recovery intuitively works) but the notion to take it easy and rest seems helpful

Specialist input = CFS clinic or service - I suppose he’s going to say that because there’s nothing else but it’s a risk - who knows which covid patients will be made worse by their approach

 

[rvallee]

Someone on the Zero Hedge financial blog, going by the name Tyler Durden, has collated a number of Reddit threads reporting ongoing long-term symptoms following Covid-19.

https://www.zerohedge.com/health/yo...gony-symptoms-lasting-nearly-two-months-after

ZeroHedge is very unreliable source but the subreddit is interesting. I'll join and see how things unfold: https://old.reddit.com/r/COVID19positive/.

The first post at this moment is from someone who was dismissed because bacterial pneumonia was put to anxiety, because they mentioned having GAD. Impossible to say whether they're true stories but this is typical and expected, will cause serious issues unless the MUS project is rolled back. Especially FND, given how prevalent neurological symptoms are.

If you have to hide medical information from medical professionals or risk being mistreated and even risking death, things are at FUBAR level. This is very bad for trust in medical expertise. This is also how people flock to unofficial alternative medicine and unlicensed snake oil peddlers.

 

[rvallee]

The volume of posts on the COVID19positive forum is mostly a trickle, maybe a dozen per day with altogether about 100 comments, but very few encouraging ones. Obviously a self-selection process that only people experiencing symptoms will be interested but still. It's early, though, it could be that it takes on average a few months and everyone gets back to full health and we won't know for a while but what's most interesting is the testifying to of fluctuating symptoms, OK days where people try to resume normal activities and seem to crash, indicative of something like PEM. Lots of dizziness and neurological symptoms.

Because this is important, especially given the SMC framing, that many of those say they did not develop pneumonia or even have significant respiratory problems beyond coughing. Many say they only had mild symptoms and in fact an increase of symptoms over time. Those who experienced lung issues will likely have their own subset with specific problems but it's clearly not a requirement for some who are on their 4th even 5th week and are still ill.

I see many comments from people saying they are in their 3rd or 4th week and almost expressing losing the will to live, they just want to feel normal again. I feel like May 12 may be one hell of a day to make some noise, trying to catch the attention of people caught in this and being baffled as why this is happening.

It's also creating some attention in the wild but so far few people seem to get the connections to the first SARS and post-viral syndromes in general. I still haven't seen someone stumble on the SARS research that isn't from an ME advocate or patient. Matter of time.




I got curious about Lady Wessely and she mentioned still having sore throat, doesn't appear to have recovered. Did find this solid nugget of irony:


A cardiologist mentioned somewhere in Gerada's reply to have upper limb myalgia and positional orthostatic intolerance and self-gaslighted by suggested it could be psychosomatic. Oh boy, some people are going to have to fight cognitive dissonance as well as the illness. But those who will recover will likely smother the world with their smugness over how it's all about attitude.

Anyway the forum is well-moderated and even though it has low volume for now, I encourage people here to check it out. People are very confused and there is clearly an enormous gap in how to deal with it.

 

[FMMM1]

The volume of posts on the COVID19positive forum is mostly a trickle, maybe a dozen per day with altogether about 100 comments, but very few encouraging ones. Obviously a self-selection process that only people experiencing symptoms will be interested but still. It's early, though, it could be that it takes on average a few months and everyone gets back to full health and we won't know for a while but what's most interesting is the testifying to of fluctuating symptoms, OK days where people try to resume normal activities and seem to crash, indicative of something like PEM. Lots of dizziness and neurological symptoms.

Because this is important, especially given the SMC framing, that many of those say they did not develop pneumonia or even have significant respiratory problems beyond coughing. Many say they only had mild symptoms and in fact an increase of symptoms over time. Those who experienced lung issues will likely have their own subset with specific problems but it's clearly not a requirement for some who are on their 4th even 5th week and are still ill.

I see many comments from people saying they are in their 3rd or 4th week and almost expressing losing the will to live, they just want to feel normal again. I feel like May 12 may be one hell of a day to make some noise, trying to catch the attention of people caught in this and being baffled as why this is happening.

It's also creating some attention in the wild but so far few people seem to get the connections to the first SARS and post-viral syndromes in general. I still haven't seen someone stumble on the SARS research that isn't from an ME advocate or patient. Matter of time.




I got curious about Lady Wessely and she mentioned still having sore throat, doesn't appear to have recovered. Did find this solid nugget of irony:


A cardiologist mentioned somewhere in Gerada's reply to have upper limb myalgia and positional orthostatic intolerance and self-gaslighted by suggested it could be psychosomatic. Oh boy, some people are going to have to fight cognitive dissonance as well as the illness. But those who will recover will likely smother the world with their smugness over how it's all about attitude.

Anyway the forum is well-moderated and even though it has low volume for now, I encourage people here to check it out. People are very confused and there is clearly an enormous gap in how to deal with it.

Interesting @Michiel Tack

 

[Dolphin]

Somebody from the UK posted this to an ME list I'm on today. They are talking about BBC radio 4

Dr. James Gill, a GP and lecturer at Warwick Medical School was interviewed on ‘inside Health’ about recovery after Covid 19. He gave some good advice regarding fatigue management, exercise etc. the programme is repeated on radio 4 today at 3.30pm.

Edited to add: I see that he was behind an expert comment on the Science Media Centre https://www.sciencemediacentre.org/expert-comment-on-treatment-and-recovery-post-covid-infection/. His advice may not have been so good after all, perhaps.