Focus on Post-Exertional Malaise [in] ME/CFS in specialist healthcare improves satisfaction, reduces deteriorations, 2023,Wormgoor Rodenberg

Background: Post-Exertional Malaise (PEM) is considered a hallmark characteristic of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). This may also apply to subgroups of patients with long COVID induced ME/CFS. However, it is uncertain to what extent PEM is acknowledged in routine specialist healthcare for ME/CFS patients, and how this affects patient outcomes.

Objective: This study aims to evaluate to what extent ME/CFS patients experienced focus on PEM in specialist healthcare practice and its significance for outcome and care quality.

Methods: Data from two online cross-sectional surveys covering specialist healthcare services for ME/CFS patients at rehabilitation institutes in Norway and at two regional hospitals respectively, were analyzed. Evaluations of 788 rehabilitation stays, 86 hospital consultations and 89 hospital interventions were included. Logistic regression models and Mann-Whitney U tests were used to quantify the impact of addressing PEM on health and functioning, care satisfaction or benefit. Spearman's rank correlation and Cronbach's alpha of focus on PEM with the respondents' perception of healthcare providers' knowledge, symptom acknowledgement and suitability of intervention were assessed as measures for care quality and their internal consistency, respectively.

Results: PEM was addressed in 48% of the rehabilitation stays, 43% of the consultations and 65% of the hospital interventions. Failure to address PEM roughly doubled the risk of health deterioration following rehabilitation (OR=0.39, 95%CI 0.29-0.52; 40.1% vs 63.2% P= <.001) and hospital intervention (OR=0.34, 95%CI 0.13-0.89; 22.4% vs. 45.2%, P=.026). PEM-focus during the clinical contact was associated with significantly higher scores on patients' rated care satisfaction and benefit of both consultation and intervention. Furthermore, addressing PEM was (inter)related to positive views about healthcare providers' level of knowledge of ME/CFS, their acknowledgment of symptoms, obtained knowledge, and the perceived suitability of intervention (Cronbach's alpha ≥ 0.80).

Conclusion: PEM is still frequently not acknowledged in specialist healthcare practice for ME/CFS patients in Norway. Not addressing PEM substantially increased the probability of a decline in health and functioning following intervention and was strongly associated with reduced perceived care quality, satisfaction and benefit. These findings may be related to the applied explanatory models for ME/CFS and are most likely of relevance to long COVID.

https://www.frontiersin.org/articles/10.3389/fneur.2023.1247698/abstract

 

My M.E doctor advised me 31 years ago to do nothing, and when I started feeling better again to continue doing nothing.

I guess this is still the best simple advice to give patients. All specialist healthcare practice for ME/CFS don't understand PEM either.

 

The incidence of addressing PEM seems unexpectedly high (& maybe even more so in Norway). Recently there has been an small increase in clinics & studies mentioning PEM, but apart from serious biomedical researchers, there isn't a clear understanding of what it means. Clinics will say they are monitoring PEM, but push for increases exertion & insist it's safe because of their scrutiny.

I wonder if it's more that HCPs are advocating pacing rather than referring to PEM per se. Which is to be welcomed but it's only a start.

 

The full text has now been published:
https://www.frontiersin.org/articles/10.3389/fneur.2023.1247698/full