Patients’ experiences and effects of non-pharmacological treatment for myalgic encephalomyelitis/chronic fatigue syndrome – a scoping mixed methods review

ABSTRACT

Purpose

The EU COST Action 15111 collaboration on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) aims to assess current research and identify knowledge gaps in Europe. Presently, our purpose is to map the effects of non-pharmacological therapies (NPTs) for ME/CFS, and what patients find important in the treatment process.

Methods

A scoping mixed methods literature review of European studies identified 16 papers fulfiling our inclusion criteria. The quantitative and qualitative studies were synthesized separately in tables. Additionally, extracts from the qualitative studies were subjected to translational analysis.

Results

Effect studies addressed cognitive behavioural therapy (CBT, n = 4), multimodal rehabilitation (n = 2) and activity-pacing (n = 2). CBT reduced fatigue scores more than usual care or waiting list controls. The effects of rehabilitation and activity-pacing were inconsistent. The contents, assessment methods and effects of rehabilitation and activity pacing studies varied. For patients, health professionals’ recognition of ME/CFS and support were crucial, but they expressed ambiguous experiences of what the NPTs entail.

Conclusions

Methodological differences make comparisons across NPTs impossible, and from a patient perspective the relevance of the specific contents of NPTs are unclear. Future well-designed studies should focus on developing NPTs tailored to patients’ concerns and evaluation tools reflecting what is essential for patients.

KEYWORDS:

• Myalgic encephalomyelitis
• chronic fatigue syndrome
• systematic literature review
• cognitive behavioural therapy
• activity pacing
• exercise
• rehabilitation
• effect
• patient experiences
• non-pharmacological treatments

Acknowledgments

We like to thank Hilde I. Flaatten, the librarian at the University Library of the Medical Faculty, University of Oslo for performing the literature search.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Notes on contributors

Anne Marit Mengshoel

Anne Marit Mengshoel, RPT, PhD is professor at the Department of Interdisciplinary Health Sciences, the Medical Faculty, University of Oslo, Norway. She founded and chaired the research group Self-Management until last year. Her main research interests are patients’ illness and recovery experiences, rehabilitation outcomes and practices.

Ingrid Bergliot Helland

Ingrid Bergliot Helland, MD, PhD is a pediatrician working at Oslo University Hospital, Department of Clinical Neurosciences for Children, Rikshospitalet.  She is also the head of the Norwegian National Advisory Unit on CFS/ME and the National Advisory Unit on Feeding Disorders in Children, and has a special interest in the neurodegenerative disease Neuronal Ceroid Lipofuscinosis. Her main research interests are related to these fields.

Mira Meeus

Mira Meeus holds a PhD in Rehabilitation Sciences and Physiotherapy. She is full-time appointed as professor at the Departments of Rehabilitation Sciences and Physiotherapy at the University of Antwerp and Ghent University (Belgium). She is co-founder of the International research group Pain in Motion and is internationally recognized for her expertise in chronic pain and central sensitization.

Jesus Castro-Marrero

Jesús Castro-Marrero PhD is currently Senior Researcher in the Division of Rheumatology, ME/CFS Research Unit at the Vall d'Hebron University Hospital, Barcelona, Spain. His research is focusing on the neurobiological basis of ME/CFS, with special interest in neuroinflammation and microbiota-gut-brain axis and the autonomic nervous system, including the enteric nervous system and the vagus nerve stimulation in ME/CFS.

Derek Pheby

Derek Pheby has recently retired. His most recent appointment was as Visiting Professor of Epidemiology at Buckinghamshire New University, High Wycombe, England. He has been involved in ME/CFS research for many years in the UK, and was a member successively of the National Task Force, the Chief Medical Officer's Working Group, and the Medical Research Council Expert  Group on ME/CFS. He was responsible for the initial establishment of EUROMENE in 2006, and currently chairs its working group on socioeconomics.

Elin Bolle Strand

Elin B. Strand PhD is assistant professor at VID specialized University and advisor at National Advisory Unit for CFS/ME at Oslo University Hospital, Norway. Focus of her research are on positive and negative affect in chronic illness, coping, quality of life, resilience and recovery associated with chronic pain and chronic fatigue syndrome as well as on impact of the patient-provider relationship.