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

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

 

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.

 

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: https://twitter.com/user/status/1249446303073021960


at least he admits that's not always your choice: https://twitter.com/user/status/1249577956294483968


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?

 

terrible post corona CFS leaflet https://twitter.com/user/status/1250098703567917057

 

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

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

One notably bizarre sentence:

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:

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:

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.

 

https://twitter.com/user/status/1250271262401638405

 

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

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

 

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

 

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

 

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.

 

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

https://twitter.com/user/status/1249994728864649217

 

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

 

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.

 

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.

 

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.

https://twitter.com/user/status/1252664423371571200

https://twitter.com/user/status/1252246106643279876


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:
https://twitter.com/user/status/1251255543798345728


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

 

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

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.