Impact of COVID-19 on myalgic encephalomyelitis/chronic fatigue syndrome-like illness prevalence: A cross-sectional survey, 2024, Wood, Unger+

Impact of COVID-19 on myalgic encephalomyelitis/chronic fatigue syndrome-like illness prevalence: A cross-sectional survey
Mariah S. Wood; Nicole Halmer; Jeanne Bertolli; Laura B. Amsden; Joshua R. Nugent; Jin-Mann S. Lin; Gretchen Rothrock; Joelle Nadle; Shua J. Chai; Jennifer R. Cope; Jamila H. Champsi; James Yang; Elizabeth R. Unger; Jacek Skarbinski; for STOP-ME/CFS and COVID-SELECT

BACKGROUND
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) can be triggered by infectious agents including severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). However, the impact of the coronavirus disease 2019 (COVID-19) pandemic on ME/CFS prevalence is not well characterized.

METHODS
In this population-based cross-sectional study, we enrolled a stratified random sample of 9,825 adult participants in the Kaiser Permanente Northern California (KPNC) integrated health system from July to October 2022 to assess overall ME/CFS-like illness prevalence and the proportion that were identified following COVID-19 illness. We used medical record and survey data to estimate the prevalence of ME/CFS-like illness based on self-reported symptoms congruent with the 2015 Institute of Medicine ME/CFS criteria. History of COVID-19 was based on a positive SARS-CoV-2 nucleic acid amplification test or ICD-10 diagnosis code in the medical record, or self-report of prior COVID-19 on a survey.

RESULTS
Of 2,745,374 adults in the eligible population, an estimated 45,892 (95% confidence interval [CI]: 32,869, 58,914) or 1.67% (CI 1.20%, 2.15%) had ME/CFS-like illness. Among those with ME/CFS-like illness, an estimated 14.12% (CI 3.64%, 24.6%) developed the illness after COVID-19. Among persons who had COVID-19, those with ME/CFS-like illness after COVID-19 were more likely to be unvaccinated and to have had COVID-19 before June 1, 2021. All persons with ME/CFS-like illness had significant impairment in physical, mental, emotional, social, and occupational functioning compared to persons without ME/CFS-like illness.

CONCLUSIONS
In a large, integrated health system, 1.67% of adults had ME/CFS-like illness and 14.12% of all persons with ME/CFS-like illness developed it after COVID-19. Though COVID-19 did not substantially increase ME/CFS-like illness in the KPNC population during the study time period, ME/CFS-like illness nevertheless affects a notable portion of this population and is consistent with estimates of ME/CFS prevalence in other populations. Additional attention is needed to improve awareness, diagnosis, and treatment of ME/CFS.

Link | PDF (PLOS ONE) [Open Access]

 

Press release: COVID may trigger chronic fatigue syndrome

“Our results offer a snapshot in time, and find that in 2022, 14% of people who had ME/CFS-like illness developed it after COVID,” said senior author Jacek Skarbinski, MD, a research scientist with the Kaiser Permanente Division of Research and infectious diseases physician with The Permanente Medical Group. “We can’t yet say whether COVID added to the overall incidence of ME/CFS. We expect to know more about the interplay of these conditions in the next stages of our study.”

The researchers surveyed 9,825 KPNC patients about their symptoms and their COVID history. “We cast a wide net to find people who might have symptoms that fit the definition of ME/CFS but had not been diagnosed,” said lead author Mariah S. Wood, a data analyst with the Division of Research.

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“For a condition like ME/CFS, which is often under-diagnosed in clinical settings, carrying out surveys with individuals is the best way to identify those who may have ME/CFS,” Skarbinski said. The research team will continue surveying the patients over time.​

Overall, the researchers estimated that 1.67%, or 45,892, of 2.7 million adult KPNC members had ME/CFS-like syndrome during the study period, July to October 2022. Of those, 14.1% developed the illness after COVID.

The patients whose ME/CFS-like syndrome began after COVID were more likely to be unvaccinated against COVID-19 and to have had COVID before June 2021.

All the patients with ME/CFS-like illness had significant impairment in physical, mental, emotional, social, and occupational functioning compared with patients without the illness. “It’s hard to over-estimate the dramatic impact this illness has on their lives,” Skarbinski said.

Those whose symptoms began after COVID were more likely to have better physical functioning but greater anxiety and less energy than those with ME/CFS-like illness whose symptoms were not associated with COVID.​

More: https://divisionofresearch.kaiserpe...8/covid-may-trigger-chronic-fatigue-syndrome/

 

Likely explained by disease duration and experience/success with pacing.

 

They're close to being about where the state of knowledge in the patient community was around June of 2020. This would be disappointing if it was a random group of teenagers. They'd have to be really lazy to be this bad.

At this rate maybe they'll even catch up to the whole summer of 2020 by the end of the decade! At which point they'll still be saying they don't know enough and how it's all so mysterious. From one corner of their mouth. With the other they'll still be pushing the old traditional myths. Probably the best case scenario if we're brutally honest.

It is, but damn has it been easy to under-estimate it, though. All the way to asserting, decade after decade, that it would simply disappear. You'd think that serious professionals would adjust accordingly. Like when someone steers a ship hard left into a cliff, you can't just gently and slowly steer it 1 degree in the opposite direction. You need to bank, hard. But you have to want to. And I guess they're not there yet.

 

Couldn't they calculate a ME/CFS prevalence estimate in those with and without Sars-Cov-2 infection?

 

I doubt they could ever do that reliably. Even with reliable antibody testing, which isn't really feasible at scale, there's far too much crossover. Unless they go with the most arbitrary cutoff of pre/post 2020, which is ridiculous.

I've had ME/CFS for 16 years. I got COVID last month for the first time. I recovered to the same point I was before I got it. Where would I fit? I probably have high antibodies. Until I don't, months from now. From what I can gather, I don't even have a ME/CFS diagnosis, I think it's something else like fibromyalgia. And this is just one scenario of many where there's complete overlap and confusion all-around. Antibodies wane for everyone, so you get different answers every single time you check. In some cases it did make the ME/CFS worse. How much worse? Impossible to know, there's nothing to validate any of this.

And then of course there would be the enormous costs and resources needed to do that, knowing it isn't even reliable. They simply don't have the tools or resources for this, and that doesn't even account the lack of motivation.

It's the same issue with Germany's plan to have an off-label list of drugs for Long Covid, which excludes non-COVID cases that look the exact same. They can't even do that, there is no way to separate people here, the whole thing is just silly and it's maddening how almost no one seems to even notice that they can't even do that and that makes the entire thing a total clusterfuck of amateur nonsense.