Long Covid is being erased —again—Ed Yong

ahimsa · Apr 22, 2023

RedFox said: ↑

Those studies aren't half of pwLC. They're half of pwLC who make it to an LC clinic, making them much more likely to be severely ill.
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I just remembered one study which found 58% of Long Covid cases met the ME/CFS case definition. This study recruited patients via social media sites and email, not Long Covid clinics.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9844405/

Abstract said:

This study sought to ascertain the prevalence of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) among a sample of 465 patients with Long COVID.

The participants completed three questionnaires: (1) a new questionnaire measuring both the frequency and severity of 38 common symptoms of COVID and Long COVID, (2) a validated short form questionnaire assessing ME/CFS, and (3) a validated questionnaire measuring post-exertional malaise.

The population was predominantly white, female, and living in North America. The mean duration since the onset of COVID-19 symptoms was 70.5 weeks.

Among the 465 participants, 58% met a ME/CFS case definition. Of respondents who reported that they had ME/CFS only 71% met criteria for ME/CFS and of those who did not report they had ME/CFS, 40% nevertheless did meet criteria for the disease: both over-diagnosis and under-diagnosis were evident on self-report.

This study supports prior findings that ME/CFS occurs with high prevalence among those who have persistent COVID-19 symptoms.
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I'm not good at finding flaws in studies - maybe this study has a lot of errors! But thought I'd add it to the discussion.

I tried to find a thread for this study on the forum but couldn't find it. I'm probably not using the right title or keywords.

Wyva · Apr 22, 2023

This is the thread for the study:

https://www.s4me.info/threads/me-cf...ients-with-long-covid-2022-jason-et-al.31036/

And actually it was posted by @ahimsa even back then.

ahimsa · Apr 22, 2023

Wyva said: ↑

This is the thread for the study:

https://www.s4me.info/threads/me-cf...ients-with-long-covid-2022-jason-et-al.31036/

And actually it was posted by @ahimsa even back then.
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OMG! What an ME moment!

Mij · Apr 22, 2023

If it's anything like being evaluated for a M.E/CFS diagnosis then there are a lot of unknowns if physicians are doing proper investigating to r/o other conditions. The more severe cases of PASC could also be dealing with a different condition altogether.

Hutan · Apr 23, 2023

ahimsa said: ↑

I disagree with the word most in that second sentence. If several studies show that roughly half of the people who get Long Covid end up meeting the diagnostic criteria for ME/CFS then wouldn't you say that about half the cases resolve, not most?

Even relatively mild ME/CFS can be quite limiting. And most of the time (there are always exceptions) ME/CFS does not "resolve over time."
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Even if 50% of people with one definition of Long Covid meet ME/CFS diagnostic criteria at 4 or 6 months, it doesn't mean that a lot of those people won't recover.

We know from prospective studies of ME/CFS that a lot of people do recover within a year or so of onset.

Trish · May 5, 2023

Science writer Stuart Ritchie has written an article in the i newpaper critisising this Ed Yong article. See this post:
https://www.s4me.info/threads/long-...d-social-media-2023.31490/page-30#post-473504

DigitalDrifter · May 7, 2023

Hutan said: ↑

We know from prospective studies of ME/CFS that a lot of people do recover within a year or so of onset.
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Yes, but what criteria are those studies using?

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Long Covid is being erased —again—Ed Yong

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