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

They have a lot of discussions about Long Covid on Times Radio:

https://www.thetimes.co.uk/radio

I'm listening to them discussing it right now, the presenter said it may be a future health crisis with up to half a million people affected by it (based on the 1 in 10 scenario) in the coming year.

You can listen to past broadcasts on demand for up to 7 days after the original went out.

 

Finally had a listen and thought this was a very good episode. A physiotherapist and an OT both suffering from Long Covid discussing how to figure out balancing activity vs resting, the importance of social media and validation, brain fog, how difficult it is to prioritise pacing when life gets in the way and how much they're learning on their way through their own experience. Very recognisable and sympathetic.

There are other episodes as well on Spotify here

 

For Many COVID-19 Survivors, Another Devastating Syndrome May Follow
Myalgic encephalomyelitis, or Chronic Fatigue Syndrome, is on the rise

https://www.nextavenue.org/for-many-covid-19-survivors-another-devastating-syndrome-may-follow/

 

thank you for flagging it

 

Without breaking any patient confidences, we have worked with some of the physios responsible for the long covid group - they are brilliant advocates for an non GET approach to management and we are partnering up with them in lots of ways. We jointly did a call recently with some long covid researchers to express our concerns and are doing a joint session this coming week for student physios. Covid is a real opportunity to raise the profile of ME but as Physios for ME, we're really conscious about our time being diverted so it is fab they are there and able to help

 

I've just had a look (and wish I hadn't if I am honest!) Adds to the to-do list!

 

If you do a quick google, the term 'psychological and stress' and 'mental morbidities' is heavily stressed in outcomes years later.

 

Not sure which thread to post this to. Haven’t checked it out myself https://twitter.com/user/status/1347800915043082242

 

First paragraph and separate link from above tweet (given that some people won't be able to view a tweet).

No mention of ME or any name variant.

Returning to physical activity after covid-19

https://www.bmj.com/content/372/bmj.m4721.full

I've tagged Physios for ME in the Twitter thread itself.

 

It is interesting to see, in the responses, a proponent of "long-covid is not ME" going on to give such an accurate description of ME.

 

"Only return to exercise after at least seven days free of symptoms, and begin with at least two weeks of minimal exertion"

Did they just pull this number out of thin air?

 

"Ok, 10 days is too long and 5 days is too short. Let's go with 7 days" Done.

 

Looks as though excluding those with Long Covid symptoms which is good to see.

 

6-month consequences of COVID-19 in patients discharged from hospital: a cohort study

• Chaolin Huang, MD *
• Lixue Huang, MD *
• Yeming Wang, MD *
• Xia Li, MD *
• Lili Ren, PhD *
• Xiaoying Gu, PhD *
• et al.
• Show all authors
• Show footnotes

Published:January 08, 2021 DOI:https://doi.org/10.1016/S0140-6736(20)32656-8

https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(20)32656-8/fulltext
https://twitter.com/user/status/1347891804830642176

https://twitter.com/user/status/1347687312046518272

 

The more I've seen of Long Covid, the more I think that it would be bad for us to immediately lump Long Covid in with ME/CFS... there are going to be a lot of people recovering from LC in a variety of ways, and there's going to be an explosion of theories about why. It looks like they're repeating a lot of the problems that surrounded ME/CFS in earlier years, but seem to have lessened recently. I think that the current 'maybe it will be another form of ME/CFS but we don't really know at the moment' consensus is a good one for us. Hopefully we will make some progress with research more likely for all of us, but we'll be a bit insulated from the inevitable series of headlines about 5 people having recovered from LC after chewing a remarkable rainforest root, etc.

 

I think it is unfortunate that a study of six month follow-up of people hospitalised for Covid-19 gets tweeted back as a 'Long Covid' study. The 22% of continued lung function impairment is more or less by definition not usefully put under Long Covid. It is scarring or lung tissue loss. Similarly the renal impairment. Muscle weakness is likely to be secondary to continued impairment of both and is not usefully lumped in with fatigue.

I am fairly sure that in the long term Long Covid will fade out of the picture. We will be left with long term tissue damage from Covid-19 and ME/CFS. The ME/CFS may be of a particular variety but I think it will come under that category.

 

No shit, really? Sorry anger towards the larger medical community not you. I think everyone losing their entire livelihood from a debilitating illness where the very action of living (exertion) makes it worse and with no treatments no improvements will eventually get stressed and psychological problems. We’re aren’t robots.

 

I don’t think it’s wrong. There’s little difference in symptoms for many and the only difference in diagnosis is time, i.e. did you recover within a certain time period? There’s no “conversion” to ME/CFS I didnt notice one, it’s just the people who are lucky enough to magically recover due to nothing within their control (and no don’t believe their stories of “lifestyle” “healthy living” etc bullshit explaining their supposed recovery, it was genetics, comorbidities, demographics, luck of the dice).

It’s the same roll of the dice explaining the people the get really sick or die or not from COVID, we don’t totally understand how the die rolls on which number.

We just don’t know the true stats of people with PVFS and ME/CFS that recover within the first couple years and never got diagnosed or went to an ME clinic etc. Its a distribution doesn’t mean we shouldn’t lump LC and ME/CFS together for many where symptoms are identical, I’m sure there are a ton of people who would’ve gotten ME/CFS and had all the symptoms we did in the beginning but they just were lucky enough to recover.

 

The lung function impairment itself does not cause muscle weakness/fatigue unless the individual is approaching their ventilation limits.

 

I am genuinely fascinated with the obsession to pin everything on organ damage even though if there had ever been such a relation it would already be known for decades, as organ damage is definitely not rare or understudied. Of course it's serious but there is no reason to believe any of it is connected and it's been obvious for months that it does not even correlate. In sharp contrast with the stubborn denial that the virus should have anything to do with it, it's a reflex for so many to say "let's not assume the virus caused all of this". Yes, let's not assume that the only universal factor may not be relevant. Sure. Why not?