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

Oh, and Independent SAGE are maybe going to talk about Long Covid on Friday. It's always worth watching them anyway - an hour of sensible information and they answer questions from both the general public and journalists.

https://twitter.com/user/status/1308730681376346112

 

I wouldn't say complete trash but the problem I have with it is this part:

There's no mention of long term harm or damage which I believe is a key feature of ME. "Generalised Achiness" doesn't represent what I experience from exertion, it trivializes it. They make it sound like a bit of muscle ache that a healthy person gets after going to the gym, something inconsequential. Crucially there's no mention of exertion causing even short term lowering of the patient's PEM threshold. People need to understand that we have consequential symptoms.

 

Well the term post exertional MALAISE is the problem.

 

Seems to have evaporated?

 

It was tweeted from a suspended account.

 

I agree that this advice seems reasonably sensible. I do wish it wasn't written in such a (p-m-)aternalistic style as if the advisors knew what to do when nobody does. But at least the advice is mostly based on patient experience. It would have been even better if they just quoted patient experience.

I also thought that the idea that it was written by people who deliver 'effective' care was a bit ironic.
I would say B+ for effort here.

 

It's vague and all over the place. And we know this is not what is actually advised in clinical practice, making this even more confusing.

And poorly written. Not super important but, still.

 

Thanks, @Mij. It was fine when I posted it, I even answered it. Perhaps Twitter doesn't like Long Covid being looked at? There were a number of people responding when I last looked at it, everything seemed as sensible as you might expect (there's always somebody who disagrees - possibly they reported the post?). It's a poster I've been following for a while too. Sigh.

 

https://twitter.com/user/status/1308678318821199872


Long thread. Lots of replies. Could as well be #MEAwarenessHour for its substance.

Now let's compare to how physicians typically perceive people suffering from those symptoms:

Image from a Reddit thread

 

Critical mass of medical staff affected seems to be achieved to sway perceptions

 

I was able to read the tweet when you first posted it. It disappeared pretty fast.

 

https://www.youtube.com/watch?v=PAxufz3476o

 

Twitter is currently having technical issues
https://twitter.com/user/status/1308853643144241152

 

how brave to make such a post whilst hiding their identity no doubt this idiot has never actually listened to any patient with an m e or p v f s diagnosis i doubt this is a post by a medical doctor .this is aimed at the person replying on the above post not the original poster .

 

Oh it was on Reddit so anonymous is the norm. On the medicine forum talking about Afflicted, where they are very hostile to non-physicians so I would assume actual professional. I did not notice much in the way of comments that disagreed with the general tone of that. At best there was something kind of like pity, but not quite.

Medicine's perception of chronic illness is so FUBAR that actual physicians thought a deliberately misleading dramatization with intent to mock and malign was spot on. Right there with saying Reefer madness is realistic. Blegh. Reminds me of how imperial colonists talk about the native population, all caricatures of human behavior, where the common feature is dehumanization, not seeing some people as actual people with agency, as equals worthy of respect.

 

As Their Numbers Grow, COVID-19 “Long Haulers” Stump Experts

https://jamanetwork.com/journals/jama/fullarticle/2771111

IIRC there was a study not so long ago, maybe a few months, that looked at all possible factors and only flagged age as having an impact on the probability of chronic symptoms.

And yet what follows in the article clearly spell out that they should not have been.

I don't know if he's dense or being a jerk here but Collins is massively annoying given what happened in the past year or so. National Institute of Horseshit more like it. Sorry but this is infuriating, his empty promises ring even more hollow given this.

Jesus fuck, these people. They tell the patients presenting with symptoms to wait 6 months then try to pin the initial symptoms on the fact that they wasted 6 months in the hope it would magically go away. Get your affairs in order, people.

I am so confused at the place POTS and dysautonomia have in medicine. It is commonly mocked and yet it sometimes taken seriously. Not in order, your affairs are.

Only one way to reassure: mean it and actually do something about it.

It's nice to say it but right now for all practical matters 99.9% of physicians work with this framing in mind so it would be swell if you could change that, please and thank you.

Had that step been taken decades ago we wouldn't be in this mess but right now the steps that need to be taken have to account for the decades of failure in-between the time it was decided that medicine would work with the assumption that it is in our heads and today, when it is still very much the case and needs to change.

Not only is that "era" still very much right now, we are literally in the golden age of conversion disorder and hysteria-by-another-name. Literally never been more influential and used in practice. That era is right now. Happening as I write this and again as you read this and for the foreseeable future until the failure of the last several decades leads to massive systemic reform.

I may have quoted too much of the article, sorry. It had frustrating bits but overall a pretty good article.

 

https://jamanetwork.com/journals/jama/fullarticle/2771111

Apologies if this Parisian study has been highlighted before

 

Best wishes to Hornig - I hope that she's taking time to relax for herself, as well as doing her research related work. I imagine that her ME/CFS work would make her own symptoms even more worrying, but I hope that isn't leading her to push on past her limits with her own work. Fingers crossed she'll be one of the many who do just naturally recover (even if it takes longer than normal).

 

It is interesting that they are observing, and apparently taking seriously, the age differential. I think it was the 1961 paper into Asian flu by Imboden, Canter and Cluff, though not necessarily in that order, that concluded that that prior psychological vulnerability was the cause of enduring symptoms, but they also indicated a difference in the average ages of those who recovered and those who did not. Naturally the latter finding was never mentioned again, so far as I can tell.

 

More about viral myocarditis. Cardiologists say that it wouldn't correlate with LongCovid, and that mild viral myocarditis with other viruses is probably much more common than we realise.

Prof Beverly Hunt has said something similar about embolism. They need to look at incidence in other viral pneumonias, to know whether it's a genuine increase with Covid19, or just a large numbers effect.



https://www.theatlantic.com/health/...eart-pandemic-coronavirus-myocarditis/616420/