Literature DB >> 32432991

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

Anne Marit Mengshoel1, Ingrid Bergliot Helland2, Mira Meeus3,4,5, Jesus Castro-Marrero6, Derek Pheby7, Elin Bolle Strand8.   

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.

Entities:  

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

Mesh:

Year:  2020        PMID: 32432991      PMCID: PMC7782327          DOI: 10.1080/17482631.2020.1764830

Source DB:  PubMed          Journal:  Int J Qual Stud Health Well-being        ISSN: 1748-2623


  37 in total

Review 1.  Single subject research designs for disability research.

Authors:  S Zhan; K J Ottenbacher
Journal:  Disabil Rehabil       Date:  2001-01-15       Impact factor: 3.033

2.  The Energy Envelope Theory and myalgic encephalomyelitis/chronic fatigue syndrome.

Authors:  Leonard Jason; Kathleen Muldowney; Susan Torres-Harding
Journal:  AAOHN J       Date:  2008-05

3.  The chronic fatigue syndrome: a comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group.

Authors:  K Fukuda; S E Straus; I Hickie; M C Sharpe; J G Dobbins; A Komaroff
Journal:  Ann Intern Med       Date:  1994-12-15       Impact factor: 25.391

4.  Exploring patients' opinions of activity pacing and a new activity pacing questionnaire for chronic pain and/or fatigue: a qualitative study.

Authors:  Deborah Antcliff; Philip Keeley; Malcolm Campbell; Steve Woby; Linda McGowan
Journal:  Physiotherapy       Date:  2015-08-19       Impact factor: 3.358

5.  Cognitive behavioural therapy and psycho-education for chronic fatigue syndrome in young people: reflections from the families' perspective.

Authors:  Laura Dennison; Rachel Stanbrook; Rona Moss-Morris; Lucy Yardley; Trudie Chalder
Journal:  Br J Health Psychol       Date:  2009-05-06

6.  Experiences of young people who have undergone the Lightning Process to treat chronic fatigue syndrome/myalgic encephalomyelitis--a qualitative study.

Authors:  Silje Endresen Reme; Nicola Archer; Trudie Chalder
Journal:  Br J Health Psychol       Date:  2012-09-19

7.  Publication trends in chronic fatigue syndrome: comparisons with fibromyalgia and fatigue: 1995-2004.

Authors:  Fred Friedberg; Stephanie Sohl; Brett Schmeizer
Journal:  J Psychosom Res       Date:  2007-08       Impact factor: 3.006

8.  Multidisciplinary rehabilitation treatment versus cognitive behavioural therapy for patients with chronic fatigue syndrome: a randomized controlled trial.

Authors:  D C W M Vos-Vromans; R J E M Smeets; I P J Huijnen; A J A Köke; W M G C Hitters; L J M Rijnders; M Pont; B Winkens; J A Knottnerus
Journal:  J Intern Med       Date:  2015-08-26       Impact factor: 8.989

Review 9.  Interventions for the treatment, management and rehabilitation of patients with chronic fatigue syndrome/myalgic encephalomyelitis: an updated systematic review.

Authors:  Duncan Chambers; Anne-Marie Bagnall; Susanne Hempel; Carol Forbes
Journal:  J R Soc Med       Date:  2006-10       Impact factor: 18.000

10.  A report--chronic fatigue syndrome: guidelines for research.

Authors:  M C Sharpe; L C Archard; J E Banatvala; L K Borysiewicz; A W Clare; A David; R H Edwards; K E Hawton; H P Lambert; R J Lane
Journal:  J R Soc Med       Date:  1991-02       Impact factor: 18.000

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  1 in total

1.  The evidence base for physiotherapy in myalgic encephalomyelitis/chronic fatigue syndrome when considering post-exertional malaise: a systematic review and narrative synthesis.

Authors:  Marjon E A Wormgoor; Sanne C Rodenburg
Journal:  J Transl Med       Date:  2021-01-04       Impact factor: 5.531

  1 in total

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