Complementary Disease Management Approaches in Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Patients

Objective
There are over 100 autoimmune-related diseases affecting roughly 20% of
the population, most undiagnosed. Myalgic encephalomyelitis/chronic fatigue
syndrome (ME/CFS) is a chronic post-viral illness, for which immune dysregulation, autoimmunity, and virus reactivation are some of the key hypothesized mechanisms. Respecting the challenges of diagnosing such complex conditions and the limited specific therapies, this study aimed to provide insight into the complementarydisease management approaches in ME/CFS.
Methods
To achieve this aim, the guidelines of the National Institute for Health and Care Excellence (NICE, UK) on “Myalgic encephalomyelitis (or encephalopathy)/
chronic fatigue syndrome: diagnosis and management” (NICE guideline [NG206])
were reviewed and the Scopus, Web of Science (WoS), and PubMed databases were
used to identify relevant scientific articles.
Results
NICE guideline [NG206] notes that ME/CFS symptoms can be managed but
there is currently no cure, and recommends energy management (EM) as the option for managing ME/CFS. EM is a self-management strategy that includes all types of activity (cognitive, physical, emotional, and social), led by the person themselves with support from an ME/CFS specialist team. The following keyword search for “energy management” AND “myalgic encephalomyelitis / chronic fatigue syndrome” in the databases found a limited number of items: in Scopus (5), WoS (3), PubMed (5), and ‘Pacing’ was identified as a type of EM provided for ME/CFS patients. Although ‘Pacing’ has been used and studied for at least 10 years, a scoping review published in October 2023 highlighted the challenges of unambiguously evaluating this approach.
Conclusions
EM has been defined as one of the recommended disease management modalities for ME/CFS patients, but it is currently mainly expressed as a single ‘Pacing’. In
the authors’ view, there are other EM methods (such as Qigong, Yoga, and Coaching) whose potential should be explored for improving the quality of life of ME/CFS patients.