How do ME/CFS patients decide what interventions to try and who to listen to? An interpretive descriptive study

Problem

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is characterized by unexplained persistent and disabling fatigue. There is ongoing debate within the medical community about the influence of psychosocial and physiological factors and people living with ME/CFS often experience stigmatization. Management of ME/CFS is often challenging, and patients may be presented with a wide range of treatment options. The current study explores how participants who experienced sustained symptom improvement understand the genesis of that improvement, and how they decided which treatments or interventions to try.

Approach

This Interpretive Description study involved semi-structured qualitative interviews (n=32) with people who live in high income Global North countries with developed health systems. Eligible participants were diagnosed with ME/CFS by a health care professional and identified as having experienced a sustained improvement in symptoms. We identified how participants found information on, and made decisions about, potential therapeutic interventions to address their symptoms. Participants were recruited through social media, ME/CFS patient organizations, and clinical or research networks. Interviews were conducted by phone or video-conference, with an interview guide that was iteratively refined to incorporate emerging analytic insights.

Findings

Six participants reported complete recovery; 26 endorsed partial recovery. Every participant dedicated significant time, energy, and effort to learning about and engaging in different therapies (e.g., prescribed medication, diet changes, graded exercise therapy, complementary and alternative medicine, nutritional supplements, cognitive behavioural and psychotherapeutic interventions, faith-based interventions). Those who attended a healthcare practitioner and felt their experiences were not validated were reticent to implement practitioners’ recommendations. When a healthcare practitioner offered a high degree of validation, patients were more likely to follow their suggestions, even when those suggestions incurred significant cost. Online communities could be a legitimizing resource, although some described the advice received in these communities as warning against the interventions which were ultimately the most helpful. Pacing was a strategy commonly used to manage symptoms, but was not described as related to recovery. Participants who endorsed full recovery had embraced graded activity (physical and mental) along with some sort of psychological or neurological work.

Consequences

By exploring individual perceptions of the recovery process, we generated knowledge that informs clinical practice, aids in identifying potential therapeutic interventions, and better supports patient-centered treatment or rehabilitation for patients with ME/CFS. In particular, the findings point to the importance of establishing a therapeutic alliance which may be achieved in part by validating a patient’s illness experience.