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Neurology
Research
Defining the prevalence and symptom burden of those with self-reported severe chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a two-phase community pilot study in the North East of England
  1. Victoria Jane Strassheim1,
  2. Madison Sunnquist2,
  3. Leonard A Jason3,
  4. Julia L Newton4
  1. 1 Research and Innovation Hub/CRESTA Fatigue Clinic, Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK
  2. 2 Clinical-Community Psychology, Center for Community Research, De Paul University, Newcastle upon Tyne, UK
  3. 3 Center for Community Research, De Paul University, Chicago, Illinois, USA
  4. 4 Institute of Ageing and Health, Newcastle University, Newcastle upon Tyne, UK
  1. Correspondence to Victoria Jane Strassheim; victoria.strassheim{at}ncl.ac.uk

Abstract

Objectives To define the prevalence of severe chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and its clinical characteristics in a geographically defined area of Northern England. To understand the feasibility of a community-based research study in the severely affected CFS/ME group.

Design A two-phase clinical cohort study to pilot a series of investigations in participants own homes.

Setting Participants were community living from the area defined by the Northern clinical network of the UK.

Participants Adults with either a medical or a self-reported diagnosis of CFS/ME. Phase 1 involved the creation of a database. Phase 2: five participants were selected from database, dependent on their proximity to Newcastle.

Interventions The De Paul fatigue questionnaire itemised symptoms of CFS/ME, the Barthel Functional Outcome Measure and demographic questions were collected via postal return. For phase 2, five participants were subsequently invited to participate in the pilot study.

Results 483 questionnaire packs were requested, 63 were returned in various stages of completion. 56 De Paul fatigue questionnaires were returned: all but 12 met one of the CFS/ME criteria, but 12 or 22% of individuals did not fulfil the Fukuda nor the Clinical Canadian Criteria CFS/ME diagnostic criteria but 6 of them indicated that their fatigue was related to other causes and they barely had any symptoms. The five pilot participants completed 60% of the planned visits.

Conclusions Severely affected CFS/ME individuals are keen to participate in research, however, their symptom burden is great and quality of life is poor. These factors must be considered when planning research and methods of engaging with such a cohort.

  • chronic fatigue syndrome
  • severe
  • very severe
  • house bound
  • bedbound
  • wheelchair bound

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

https://doi.org/10.1136/bmjopen-2017-020775

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    Footnotes

    • Contributors Study concept and design: JLN and VJS. Acquisition: VJS. Analysis or interpretation of data: VJS, JLN, MS and LAJ. Drafting of the manuscript: JLN and VJS. Critical revision of the manuscript for important intellectual content: all authors. Statistical analysis: VJS, JLN and MS. Obtained funding: JLN. Administrative, technical or material support: JLN and VJS. Study supervision: VJS and JLN.

    • Funding This study was supported by ME Research UK HG/MC/136149.

    • Disclaimer The funders approved the study design but had no other role in the collection, management, analysis and interpretation of the data or preparation of the manuscript for submission.

    • Competing interests None declared.

    • Patient consent Not required.

    • Ethics approval Ethical approval was granted by Newcastle and North Tyneside 2 Research and Ethics Committee.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data sharing statement Access to data available on request (victoria.strasshiem@ncl.ac.uk).