A comparison of health-related factors between patients diagnosed with ME/CFS and patients with a related symptom picture but no ME/CFS diagnosis: A cross-sectional exploratory study

Author:

Bernhoff Gabriella1ORCID,Rasmussen-Barr Eva2,Käll Lina Bunketorp3

Affiliation:

1. Karolinska Institute: Karolinska Institutet

2. Karolinska Institute Department of Neurobiology Care Sciences and Society: Karolinska Institutet Institutionen for Neurobiologi vardvetenskap och samhalle

3. University of Gothenburg Institute of Neuroscience and Physiology: Goteborgs universitet Institutionen for neurovetenskap och fysiologi

Abstract

Abstract Background In chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS), the capacity for activity and participation is strongly limited. The disease definition is very broad, and considering the lack of evidence for best treatment, it is important to understand what is ME/CFS-specific in the biopsychosocial perspective in comparison with similar syndromes. The objective was to study the difference between those diagnosed with ME/CFS and those with similar symptoms but no ME/CFS diagnosis for self-perceived level of physical activity, work ability, anxiety/depression, and health-related quality of life. Methods This was a clinical cross-sectional study with data collected from mailed questionnaires. The following variables were compared between patients diagnosed with ME/CFS (n=205) and those with similar symptoms but no diagnosis (n=57); level of physical activity, Work ability index (WAI), Hospital anxiety and depression scale (HAD-A/HAD-D), and RAND-36 Physical functioning, Role limitations due to physical health problems, Role limitations due to personal or emotional problems, Social functioning, Energy/fatigue, Bodily pain, Emotional well-being, and General health perceptions. The Chi-squared test (nominal data), the Mann-Whitney U test and the Student’s t test were used to analyze the data. Results The group diagnosed with ME/CFS had a more impaired physical and mental exertion ability as compared to the group that had similar symptoms but was not diagnosed with ME/CFS, shown by a RAND-36 lower index of physical role functioning (p = 0.00), social functioning (p=0.00), energy (p = 0.01), worse pain (p = 0.02) and poorer overall health (p = 0.00). In contrast, no significant group differences emerged for weekly level of physical activity, work ability, anxiety/depression, and RAND-36 Emotional role limitation and well-being. Conclusion Our results indicate that those with a diagnosis of ME/CFS are characterized by an impaired ability for physical or mental exertion, worse pain, and poorer overall health as compared to individuals with similar symptoms but for whom ME/CFS-diagnosis was not established. The results may be cautiously interpreted as support when focusing on patients' self-care in terms of management of energy levels. The results must however be verified in future studies.

Publisher

Research Square Platform LLC

Reference65 articles.

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2. A relational analysis of an invisible illness: A meta-ethnography of people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and their support needs;Pilkington K;Soc Sci Med,2020

3. Marsh S. ME exercise therapy guidance scrapped by health watchdog Nice [Internet]. London, United Kingdom: The Guardian; 2021 [updated 2021; cited 2022 May 22]. Available from: https://www.theguardian.com/society/2021/oct/29/health-watchdog-nice-publishes-delayed-me-guidance?CMP=Share_iOSApp_Other.

4. Myalgic encephalomyelitis: International Consensus Criteria;Carruthers BM;J Intern Med,2011

5. CDC. Myalgic encephalomyelitis/chronic fatigue syndrome [Internet]. [Atlanta, GA: Centers for Disease Control and Prevention]; Updated 2022 April 22; cited 2022 May 22]. Available from: https://www.cdc.gov/me-cfs/index.html.

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