It's also studying nurses early in the pandemic, who as a group were under unusual stress and exposed to unusual health risks, so not really generalisable to broader populations.
The Setpoint Trap: A New Way to Think About ME/CFS (Desmolysium.com)
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It's also studying nurses early in the pandemic, who as a group were under unusual stress and exposed to unusual health risks, so not really generalisable to broader populations.
I don’t think you can compare people with post-Covid symptoms (I think that means any symptoms at all, incl respiratory, fatigue or mental health symptoms) longer than just 4 weeks with ME/CFS. Could imagine that 90% of that population of people resolved their symptoms. I am not sure given the very vague definitions of long Covid used in 2022 and still today, what percentage of them then and now are considered to have developed ME/CFS.
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Probably some food for thought here, though of course no definite answers!
Evergreen
Senior Member (Voting Rights)
Welcome, @desmolysium, great to have you here. I'm so sorry your friends have been affected by long COVID or ME/CFS.
Like others, I enjoyed reading your blog, and hope you will keep thinking about ME/CFS.
But it's important not to slip into the setpoint trap of doctors, which is that we're depressed/anxious, or were depressed/anxious.
The cohort was older and had a higher proportion of females than any ME/CFS cohort I have seen, plus it had a hefty proportion of health care workers who were under tremendous strain during the pandemic:
That means you've got different factors at play, with people who had asthma or obesity feeling vulnerable during a pandemic of a respiratory illness:
The proportion of the long COVID population that fulfill ME/CFS criteria is generally about 50%. In the Wang et al. study you pointed to,
According to the prospective study by Jason (a psychologist with ME/CFS) & Katz that @jnmaciuch already linked to above:
Have you come across prospective studies of ME/CFS post-COVID that suggest higher pre-morbid depression or anxiety than well-matched controls where other confounders are controlled?
Like others, I enjoyed reading your blog, and hope you will keep thinking about ME/CFS.
But it's important not to slip into the setpoint trap of doctors, which is that we're depressed/anxious, or were depressed/anxious.
That study was on "post-COVID conditions":
The cohort was older and had a higher proportion of females than any ME/CFS cohort I have seen, plus it had a hefty proportion of health care workers who were under tremendous strain during the pandemic:
That means you've got different factors at play, with people who had asthma or obesity feeling vulnerable during a pandemic of a respiratory illness:
and at higher risk of some post-COVID conditions that have nothing to do with ME/CFS.
The proportion of the long COVID population that fulfill ME/CFS criteria is generally about 50%. In the Wang et al. study you pointed to,
You can't draw any conclusions about ME/CFS from an undifferentiated long COVID cohort.
According to the prospective study by Jason (a psychologist with ME/CFS) & Katz that @jnmaciuch already linked to above:
Have you come across prospective studies of ME/CFS post-COVID that suggest higher pre-morbid depression or anxiety than well-matched controls where other confounders are controlled?
Thread about the study here:
Associations of Depression, Anxiety, Worry, Perceived Stress, and Loneliness Prior to Infection With Risk of Post–COVID-19 Conditions, 2022, Wang et a
I wouldn't draw any conclusions from that study. As posters on that thread point out, it's not sound science.
Evergreen
Senior Member (Voting Rights)
The Wang et al. post-COVD conditions cohort was
In Collin & Crawley's study of 11 NHS specialist ME/CFS clinics, the median age of those providing follow-up data was 42 and the proportion of females 82%. They had been sick for a median 26 months at baseline.
(Those who did not provide follow-up data were younger and sick for longer: average age was 39, 80% were female, sick for 36 months.)
See table S1 under Additional Files.
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Chandelier
Senior Member (Voting Rights)
Hi @desmolysium
Thanks for joining, good to have you here!
I was only able to skim your article
From Severe Long-COVID to Ironman Training in 18 Months
but I wanted to ask, if you are aware that around 80% of pwLC recover within the first year?
While I really appreciate how you share the different medications you’ve tried and its perceived effects, I think it is very important to set your n=1 experience into relation to the bigger picture.
Otherwise, your approach does not gain much in comparison to a hospital that plays the ostrich game by refusing to diagnose Long Covid at all because:
Thanks for joining, good to have you here!
I was only able to skim your article
From Severe Long-COVID to Ironman Training in 18 Months
but I wanted to ask, if you are aware that around 80% of pwLC recover within the first year?
While I really appreciate how you share the different medications you’ve tried and its perceived effects, I think it is very important to set your n=1 experience into relation to the bigger picture.
Otherwise, your approach does not gain much in comparison to a hospital that plays the ostrich game by refusing to diagnose Long Covid at all because:
jnmaciuch
Senior Member (Voting Rights)
ah sorry, I was linking more to the discussion in the thread rather than the article itself. Later in the thread there’s discussion of a similar finding in narcolepsy, which was found to be due to epigenetic silencing of the CRH gene rather than death of the neurons. From genetics and epidemiology there seems to be a decent suggestion that type I narcolepsy is immune mediated as well.
Biologically it seems more feasible for specific genes like CRH or orexin to get suppressed epigenetically than for those and only those neurons to die off, especially when that part of the hypothalamus is a mosaic of different types of neurons and others in that mosaic seem to be functioning normally in both narcolepsy and ME/CFS.
Utsikt
Senior Member (Voting Rights)
The studies that have reported a rate of 50 % are based on referrals to specialist clinics. Those groups are not at all representative for LC as a whole.
Evergreen
Senior Member (Voting Rights)
Agree, but it's the best figure we have at present to make the point that you cannot conclude anything about ME/CFS from a study on "post-COVID conditions", in which only half reported fatigue. Have there been community-based studies?
Utsikt
Senior Member (Voting Rights)
If they are the best we’ve got, we know nothing.
LC is defined as having any symptoms following covid. So only half reporting fatigue might be right. The category is too vague to be useful.
i don’t know
Evergreen
Senior Member (Voting Rights)
And that's the point I made.
Grigor
Senior Member (Voting Rights)
This Lifelines study follows people for many years prior to an infection and found no significant association with psychiatric disorders and Long-Covid.
“In contrast to previous studies, older age,9,10 smoking,9,10 cardiovascular disease, lung disease and psychiatric disorder9 were not significantly associated with post-COVID-19 condition, although point estimates for cardiovascular disease, lung disease and psychiatric disorder were increased.”
Utsikt
Senior Member (Voting Rights)
Apologies, I must have misunderstood.
I recall setpoint discussions back in the 90s, long before forums like this. In my own case I was interested in strange attractors, or chaos theory, spiraling around a zone or region, rather than a fixed set point. However I am not aware that these concepts had any major development over time.
AliceLily
Senior Member (Voting Rights)
Yes. I never like visiting the doctor when very ill or needing them to sign forms for the benefit. It's highly stressful. Especially when you know they have no understanding of how sick you are or how severe ME can get.