Preprint High proportions of post-exertional malaise and orthostatic intolerance in people living with post-COVID-19 condition: the PRIME post-COVID study, 202

High proportions of post-exertional malaise and orthostatic intolerance in people living with post-COVID-19 condition: the PRIME post-COVID study
Demi ME Pagen; Maarten Van Herck; Celine JA van Bilsen; Stephanie Brinkhues; Kevin Konings; Casper DJ den Heijer; Martijn A Spruit; Christian JPA Hoebe; Nicole HTM Dukers-Muijrers

Background
Exercise-based treatments can be harmful in people who were SARS-CoV-2 positive and living with post-COVID-19 condition (PL-PCC) and who have post-exertional malaise (PEM) or orthostatic intolerance (OI). Nevertheless, PEM and OI are not routinely assessed by clinicians. We estimated PEM and OI proportions in PL-PCC, as well in people not living with PCC (PnL-PCC) and negatives (i.e., never reported a SARS-CoV-2 positive test), and identified associated factors.

Methods
Participants from the PRIME post-COVID study were included. PEM and OI were assessed using validated questionnaires. PCC was defined as feeling unrecovered after SARS-CoV-2 infection. Multivariable regression analyses to study PEM and OI were stratified for sex.

Results
Data from 3,783 participants was analyzed. In PL-PCC, proportion of PEM was 48.1% and 41.2%, and proportion of OI was 29.3% and 27.9% in women and in men, respectively. Proportions were higher in PL-PCC compared to negatives, for PEM in women OR=4.38 [95%CI:3.01-6.38]; in men OR=4.78 [95%CI:3.13-7.29]; for OI in women 3.06 [95%CI:1.97-4.76]; in men 2.71 [95%CI:1.75-4.21]. Associated factors were age ≤60 years, ≥1 comorbidities and living alone.

Conclusions
High proportions of PEM and OI are observed in PL-PCC. Standard screening for PEM and OI is recommended in PL-PCC, to promote appropriate therapies.

Link | PDF (Preprint: MedRxiv)

 

Really awesome to see this work, especially from researchers I wasn't even aware of, with funding from the Dutch government.

Can someone enlighten me whether their PEM screening is a standard screening method or similar to that used in ME/CFS research? 48.1% respectively 41.2% seems an awfully high number, almost too high from my understanding.

 

Now published.

Background: Exercise-based treatments can worsen/exacerbate symptoms in people who were SARS-CoV-2 positive and living with post-COVID-19 condition (PL-PCC) and who have post-exertional malaise (PEM) or orthostatic intolerance (OI). Nevertheless, PEM and OI are not routinely assessed by clinicians. We estimated PEM and OI proportions in PL-PCC, as well as in people not living with PCC (PnL-PCC) and negatives (i.e., never reported a SARS-CoV-2 positive test), and identified associated factors.

Methods: Participants from the Prevalence, Risk factors, and Impact Evaluation (PRIME) post-COVID-19 condition study were included. PEM and OI were assessed using validated questionnaires. PCC was defined as feeling unrecovered after SARS-CoV-2 infection. Multivariable regression analyses to study PEM and OI were stratified for sex.

Results: Data from 3,783 participants were analyzed. In PL-PCC, the proportion of PEM was 48.1% and 41.2%, and the proportion of OI was 29.3% and 27.9% in women and men, respectively. Proportions were higher in PL-PCC than negatives, for PEM in women OR=4.38 [95%CI:3.01–6.38]; in men OR = 4.78 [95%CI:3.13–7.29]; for OI in women 3.06 [95%CI:1.97-4.76]; in men 2.71 [95%CI:1.75–4.21]. Associated factors were age ≤ 60 years, ≥1 comorbidities, and living alone.

Conclusion: High proportions of PEM and OI are observed in PL-PCC. Standard screening for PEM and OI is recommended in PL-PCC to promote appropriate therapies.

Open access, https://www.frontiersin.org/articles/10.3389/fmed.2023.1292446/full

 

"Additionally, the questionnaire included the validated DePaul Symptom Questionnaire Post-Exertional Malaise (DSQ-PEM) (22) and four items from the DePaul Symptom Questionnaire-2 (DSQ-2) regarding OI (23, 24), and experienced symptoms (44 pre-listed) with severity scores (range 1–10)."

So a questionnaire developed for ME/CFS research.

 

Obviously some of us here on the forum question how accurately these questions from the DSQ actually represent PEM.

"2.5.1 Post-exertional malaise
In the DSQ-PEM, respondents rated five items over the previous 6 months on frequency (never, sometimes, about half the time, most of the time, always) and severity (no, mild, moderate, severe, very severe) on a 5-point Likert scale. The five items were “A dead, heavy feeling after starting to exercise”, “Next day soreness or fatigue after non-strenuous, everyday activities”, “Mentally tired after the slightest effort”, “Minimum exercise makes you physically tired”, and “Physically drained or sick after mild activity”. A score on frequency of about half of the time to always and a score on severity of moderate to very severe on the same item on any of the five items is indicative of PEM (22). Additionally, in people who had PEM, a sum score (range 4–40; minimum of 4 due to the threshold for having PEM) of frequency (range 0–4) and severity (0–4) of the five items was calculated as severity measure (25)."