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

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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.
 
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Kalliope said:
Haven't seen this yet myself, but looks interesting
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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

Graded exercise, the kind where you push yourself to increase endurance, has been found to be detrimental to people with ME/CFS.

"Individuals with the disorder need to learn pacing, in which they are taught to respect their own triggers and limitations." says Adriane Tillman, editor of #MEAction, an international organization of people with ME, caregivers and family members. "This means stopping and resting at the first signs of overexertion. Pacing helps patients to avoid a cycle of push-and-crash which can worsen symptoms significantly."
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https://www.nextavenue.org/for-many-covid-19-survivors-another-devastating-syndrome-may-follow/
 
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Ravn said:
Since the editors of this Long Covid page seem to have a reasonably good understanding of ME I went looking to see what Physiopedia had on ME/CFS. Lets put it this way: let's hope none of their tens of thousands of followers find this page any time soon. If there are any physiotherapists or physical therapists (requirement to become an editor) here with spare energy, it really could do with some work, it's a random mash up of the good, the bad and the ugly.

https://physio-pedia.com/Myalgic_Encephalomyelitis/Chronic_Fatigue_Syndrome
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thank you for flagging it
 
rvallee said:
Long Covid page on Physio-pedia. No idea how big physio-pedia is within the profession but pretty decent overview. Appears to have been written by the physios who make up this group: https://twitter.com/LongCOVIDPhysio.

https://physio-pedia.com/Long_COVID
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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
 
rvallee said:
How has there still not been a follow-up study on the SARS survivors yet? It's been less than 20 years, most are probably still alive. How much work would that even require? The data would be skewed for those hospitalized but that's what we have to work with. The chances that there were no mild cases that did not require hospitalization is unlikely, no reason to think it was that radically different from Covid.
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If you do a quick google, the term 'psychological and stress' and 'mental morbidities' is heavily stressed in outcomes years later.
 
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
What you need to know
  • Risk stratify patients before recommending a return to physical activity in people who have had covid-19. Patients with ongoing symptoms or who had severe covid-19 or a history suggestive of cardiac involvement need further clinical assessment

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

  • Use daily self monitoring to track progress, including when to seek further help
Our professional experience suggests that, after mild suspected covid-19, a proportion of people experience a prolonged recovery, particularly when trying to return to exercise. Moreover, there is increasing recognition of potential long term complications of covid-19, including enduring illness (“post-acute” or “long” covid), cardiopulmonary disease, and psychological sequelae in some people.1234 This article offers a pragmatic approach to help patients safely return to physical activity after symptomatic SARS-CoV-2 infection, focusing on those who have lost fitness or had a prolonged period of inactivity but who do not have an enduring post-acute covid-19 illness. It is based on current evidence and consensus statements, and our own multidisciplinary experience in sports and exercise medicine, rehabilitation, and primary care.
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https://www.bmj.com/content/372/bmj.m4721.full

I've tagged Physios for ME in the Twitter thread itself.
 
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.
 
Mij said:
If you do a quick google, the term 'psychological and stress' and 'mental morbidities' is heavily stressed in outcomes years later.
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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.
 
Esther12 said:
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.
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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.
 
Jonathan Edwards said:
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.
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The lung function impairment itself does not cause muscle weakness/fatigue unless the individual is approaching their ventilation limits.
 
Snow Leopard said:
The lung function impairment itself does not cause muscle weakness/fatigue unless the individual is approaching their ventilation limits.
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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?
 
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