Illness presentation and quality of life in [ME/CFS and LC]: a pilot Australian cross-sectional study, 2024, Weigel, Eaton-Fitch, Marshall-Gradisnik+

Illness presentation and quality of life in myalgic encephalomyelitis/chronic fatigue syndrome and post COVID-19 condition: a pilot Australian cross-sectional study
Weigel, Breanna; Eaton-Fitch, Natalie; Thapaliya, Kiran; Marshall-Gradisnik, Sonya

PURPOSE
Post COVID-19 Condition (PCC), being persistent COVID-19 symptoms, is reminiscent of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)—a chronic multi-systemic illness characterised by neurocognitive, autonomic, endocrinological and immunological disturbances. This novel cross-sectional investigation aims to: (1) compare symptoms among people with ME/CFS (pwME/CFS) and people with PCC (pwPCC) to inform developing PCC diagnostic criteria; and (2) compare health outcomes between patients and people without acute or chronic illness (controls) to highlight the illness burdens of ME/CFS and PCC.

METHODS
Sociodemographic and health outcome data were collected from n = 61 pwME/CFS, n = 31 pwPCC and n = 54 controls via validated, self-administered questionnaires, including the 36-Item Short-Form Health Survey version 2 (SF-36v2) and World Health Organization Disability Assessment Schedule version 2.0 (WHODAS 2.0). PwME/CFS and pwPCC also provided self-reported severity and frequency of symptoms derived from the Canadian and International Consensus Criteria for ME/CFS and the World Health Organization case definition for PCC.

RESULTS
Both illness cohorts similarly experienced key ME/CFS symptoms. Few differences in symptoms were observed, with memory disturbances, muscle weakness, lymphadenopathy and nausea more prevalent, light-headedness more severe, unrefreshed sleep more frequent, and heart palpitations less frequent among pwME/CFS (all p < 0.05). The ME/CFS and PCC participants’ SF-36v2 or WHODAS 2.0 scores were comparable (all p > 0.05); however, both cohorts returned significantly lower scores in all SF-36v2 and WHODAS 2.0 domains when compared with controls (all p < 0.001).

CONCLUSIONS
This Australian-first investigation demonstrates the congruent and debilitating nature of ME/CFS and PCC, thereby emphasising the need for multidisciplinary care to maximise patient health outcomes.

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Plain English summary

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Post COVID-19 Condition (PCC) are chronic illnesses that affect multiple body systems. While the exact biological causes of these illnesses are not yet known, people with ME/CFS (pwME/CFS) and people with PCC (pwPCC) experience similar symptoms and difficulties in daily functioning.

However, specific similarities and differences, which may warrant tailored approaches to management, have not yet been investigated in detail. Additionally, poor recognition of the impacts of these illnesses has prevented pwME/CFS and pwPCC from accessing necessary care. As the first comprehensive investigation of the illness experiences of pwME/CFS and pwPCC in Australia, this study serves to provide evidence to inform care pathways and changes to health policies, thereby ensuring that care aligns with patients’ needs.

Few differences were observed in the symptoms experienced by pwME/CFS and pwPCC in this study. Importantly, post-exertional malaise—the defining feature of ME/CFS—was equally as common, severe and frequent among pwPCC. The ME/CFS and PCC groups returned similar scores across all quality of life categories, indicating comparable effects on health and wellbeing. For both illness groups, all aspects of quality of life were considerably poorer when compared with people without acute or chronic illness.

Both ME/CFS and PCC have an extensive symptom burden and similar widespread impacts on patients’ lives. The findings of this study emphasise the importance of accessible, holistic care and support for both patient cohorts and highlight the potential role of existing protocols for ME/CFS in the diagnosis and management of PCC.