Symptom persistence and biomarkers in post-COVID-19/chronic fatigue syndrome – results from a prospective observational cohort 2023, Scheibenbogen et

preprint

Abstract
Introduction Post-COVID-19 syndrome (PCS) is characterized by a wide range of symptoms, predominantly fatigue and exertional intolerance. While disease courses during the first year post infection have been repeatedly described, little is known about long-term health consequences.

Methods We assessed symptom severity and various biomarkers at three time points post infection (3-8 months (mo), 9-16mo, 17-20mo) in 106 PCS patients with moderate to severe fatigue and exertional intolerance. A subset of patients fulfilled diagnostic criteria of myalgic encephalomyelitis/chronic fatigue syndrome (PCS-ME/CFS) based on the Canadian Consensus Criteria.

Results While PCS-ME/CFS patients showed persisting symptom severity and disability up to 20mo post infection, PCS patients reported an overall health improvement. Inflammatory biomarkers equally decreased in both groups. Lower hand grip force at onset correlated with symptom persistence especially in PCS-ME/CFS.

Discussion Debilitating PCS may persist beyond 20mo post infection, particularly in patients fulfilling diagnostic criteria for ME/CFS.

https://www.medrxiv.org/content/10.1101/2023.04.15.23288582v1

Edit: Now published.
https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(23)00323-1/fulltext See abstract in post #9

 

It would be great to come up with a set of brief but telling activities, that could be sent out as prompts to people at random times during the day and early evening, asking (as long as it's safe and feasible where they currently are) to do X, Y or Z as soon as possible.

We're all so used to making adjustments to enable essential living activities that it'd take something along these lines to reveal the true picture. Otherwise, if we know that today we're going to be doing a series of small tests, we'll postpone other stuff without even thinking about it.

 

The low incidence of POTS is surprising to me. I know Klimas, Rowe, Systrom, and probably others would say the prevalence is much much higher.

 

Another group also found POTS prevalence decreased with time in long Covid:
“Long-Haul COVID Patients: Prevalence of POTS Are Reduced but Cerebral Blood Flow Abnormalities Remain Abnormal with Longer Disease Duration”
https://pubmed.ncbi.nlm.nih.gov/36292552/

 

Another study by the same Dutch team found:
“Table 3 shows the baseline characteristics
of the ME/CFS patients with a normal heart rate and blood pressure response and ME/CFS patients with POTS. Patients with POTS had a shorter duration of disease and were younger (both p<0.0001).”
https://esmed.org/MRA/mra/article/view/2891/193546174

 

The paper has now been published in the Lancet eClinicalMedicine https://www.sciencedirect.com/science/article/pii/S2589537023003231?dgcid=author
https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(23)00323-1/fulltext
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 patientswith 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.

 

If I understand correctly, the selection criteria already required persistent moderate to severe fatigue and exertion intolerance with PEM.

Therefore the study is unable to give an estimate of how many Long Covid patients have ME/CFS except that it is likely smaller than the 51% (55/106) found here.