Long-term symptom severity and clinical biomarkers in post-COVID-19/[CFS]: results from a prospective observational cohort, 2023, Legler+

eClinicalMedicine
Long-term symptom severity and clinical biomarkers in post-COVID-19/chronic fatigue syndrome:results from a prospective observational cohort
Legler et al

Summary

Background

Post-COVID-19 syndrome (PCS) is characterised by a wide range of symptoms, primarily fatigue and exertion intolerance. While disease courses in the early months post-infection have been well-described, the long-term health consequences for patients with PCS with disabling fatigue remain unclear.

Methods

In this prospective observational cohort study, we evaluated symptom severity and various biomarkers, including hand grip strength (HGS), cardiovascular function, and laboratory parameters, in 106 patients with PCS with moderate to severe fatigue and exertion intolerance at three time points after infection (3–8, 9–16, and 17–20 months). The study was conducted at the Charité’s Fatigue Centre and the Charité’s outpatient clinic for neuroimmunology at Berlin, Germany from July 16, 2020, to February 18, 2022. A subset of patients (PCS-ME/CFS) met the diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome according to the Canadian Consensus Criteria (CCC). The aim was to determine differences in the disease course between the two patient groups (i.e., PCS vs PCS-ME/CFS) and identify correlating biomarkers.

Findings

Patients with PCS-ME/CFS reported persistently high severity of most symptoms up to 20 months after infection, while patients with PCS showed overall health improvement. Although fatigue and post-exertional malaise (PEM), hallmarks of post-infectious fatigue syndromes, were still evident in both groups, they remained more pronounced in PCS-ME/CFS. Inflammatory biomarkers decreased in both groups, but not antinuclear antibodies. Lower HGS at onset correlated with symptom persistence, particularly in patients with PCS-ME/CFS.

Interpretation

Our findings suggest that PCS can persist beyond 20 months post-infection and encompass the full scope of post-infectious ME/CFS as defined by the CCC. Sub-classifying patients with PCS based on the CCC can assist in the management and monitoring of patients with PCS-ME/CFS due to their persistently higher symptom severity.



https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(23)00323-1/fulltext

 

CIDRAP
Long-COVID patients with severe fatigue report little relief by 20 months

quotes:

The authors noted that some long-COVID patients with severe fatigue and exertion intolerance also meet the criteria for ME/CFS, a neuro-immunologic disease characterized by these symptoms and post-exertional aggravation of symptoms that can lead to physical disability. Patients with long COVID alone have similar symptoms but in general have milder post-exertion symptoms that resolve sooner.

...

Scheibenbogen said that the number of Europeans with ME/CFS has doubled since the pandemic began. "Our study shows that most people with ME/CFS remain severely ill," she said. "In addition to ramping up our efforts to find effective therapies, this means we also need to quickly establish healthcare facilities where patients can receive multidisciplinary care based on current scientific findings and clinical experience."

 

Sometimes I wish researchers and advocates would be more careful with wording, as well intentioned as they may be. It can have a misleading effect. There are no generally effective therapies and few are really looking, current scientific findings are all over the place, and clinical experience is anecdotal at best.

Better to just say we've painted millions of very sick people into a corner, and we better roll up our sleeves and figure a way to extricate them.

 

article
Biomarkers unveil insights into post-COVID-19 syndrome variability

https://www.news-medical.net/news/2...-into-post-COVID-19-syndrome-variability.aspx

 

Studyfinds Long COVID can leave some patients with crippling fatigue for nearly 2 years

quote:

Researchers identified two distinct groups of PCS patients with severe fatigue and exertion intolerance. One group met the diagnostic criteria for ME/CFS, a complex neuroimmunological disease characterized by severe fatigue, exertion intolerance, and post-exertional exacerbation of symptoms that can lead to physical disability. The second group exhibited similar symptoms, but they were generally less severe, and post-exertional symptoms were milder and shorter-lived.

 

I only read a little bit of this, and it started out okay. But the first link (2nd paragraph) goes here:

Threat of long COVID overblown by flawed science, study claims

https://studyfinds.org/threat-of-long-covid-overblown/​

In both articles most of the links go to studyfinds.org, not to another website with research details. So you end up going from one StudyFinds article to another.

I had to scroll down pretty far to find a link that went somewhere else.

All those links to their own website, plus a byline of "StudyFinds Staff," does not inspire confidence.

Does anyone know more about this StudyFinds site?

 

Thanks!

I was hoping for something written by someone else (eg, website that reviews media outlets? or something like that?), not something posted by their own website.

EDIT: I found this, for what it's worth:

https://mediabiasfactcheck.com/study-finds-bias/

For comparison, here's their rating of Epoch Times (my 84 year old friend reads this newspaper because it's so pro-Trump):

https://mediabiasfactcheck.com/the-epoch-times/

 

Thank you so much @ahimsa for digging into studyfinds. I just assumed they were an average popular science news outlet, a bit like IFLS. But yes, this doesn't look very good..

 

2 peer review reports in case anyone is curious

https://rrid.mitpress.mit.edu/pub/iy2dv3ad/release/1

Review 1: "Symptom Persistence and Biomarkers in Post-COVID-19/Chronic Fatigue Syndrome – Results From a Prospective Observational Cohort"

by Andrew Lloyd

https://rrid.mitpress.mit.edu/pub/jccfepom/release/1


Review 2: "Symptom Persistence and Biomarkers in Post-COVID-19/Chronic Fatigue Syndrome – Results From a Prospective Observational Cohort"
In its current state as a preprint, descriptions of several methods and supplemental data are also not available, making it more difficult to fully assess certain results.

by Ruud Raijmakers

 

A classical Ruud Raijmakers review.

A lot of focus on that an ME/CFS diagnosis leads to a worse outcome, instead of having ME/CFS that leads to this outcome, “strengthens the poor prognosis that ME/CFS diagnosis” have. Raijmakers probably also thinks "AIDS is a harmless syndrome, however a diagnosis leads to bad health".

And on the other hand the continued wish to ignore PEM so that one can produce favorable studies by recruiting patients that don't actually have ME/CFS according to modern criteria “Stating that PEM is a hallmark for ME/CFS, based on these findings, is a perhaps too strong of a conclusion.”.