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, by Victoria Jane Strassheim,  Madison Sunnquist, Leonard A Jason, Julia L Newton in BMJ Open Vol 19, #8, p e020775 [Published: September 19, 2018]

Research abstract:

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.

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

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

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.

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.

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.

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.

Strengths and limitations of this study

  • Two-phase pilot study with severe chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) individuals in the community, to understand the feasibility of engaging those with severe CFS/ME with research.
  • Phase 1 consisted of postal questionnaires including demographic data, Barthel Functional Outcome Score and De Paul fatigue questionnaire.
  • Effort was taken to engage with this severely symptom burdened group in their own environment.
  • The postal questionnaires sent to return ratio was poor; feedback from the local support group suggests in part due to the severity of impairment experienced by this group of individuals.
  • This pilot study can only give an indication of possible people with severe CFS/ME presentation in a specific, geographically defined area.
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