{"id":18093,"date":"2018-09-24T06:48:17","date_gmt":"2018-09-24T06:48:17","guid":{"rendered":"http:\/\/wames.org.uk\/cms-english\/?p=18093"},"modified":"2018-09-24T06:48:51","modified_gmt":"2018-09-24T06:48:51","slug":"defining-the-prevalence-symptom-burden-of-those-with-self-reported-severe-cfs-me","status":"publish","type":"post","link":"https:\/\/wames.org.uk\/cms-english\/defining-the-prevalence-symptom-burden-of-those-with-self-reported-severe-cfs-me\/","title":{"rendered":"Defining the prevalence & symptom burden of those with\u00a0self-reported severe CFS\/ME"},"content":{"rendered":"

Defining the prevalence and symptom burden of those with\u00a0self-reported severe chronic fatigue syndrome\/myalgic\u00a0encephalomyelitis (CFS\/ME): A two-phase community pilot\u00a0<\/a>study in the North East of England, by\u00a0Victoria Jane Strassheim,\u00a0\u00a0Madison Sunnquist, Leonard\u00a0A Jason, Julia L Newton in<\/span>\u00a0BMJ Open\u00a0<\/em>Vol 19, #8, p e020775 [Published: September 19, 2018]<\/h3>\n

Research abstract:<\/strong><\/p>\n

Objectives:<\/strong>
\n\"\"To define the prevalence of severe chronic fatigue syndrome\/ myalgic\u00a0 encephalomyelitis (CFS\/ME) and its clinical characteristics in a\u00a0geographically defined area of Northern England. To understand the\u00a0feasibility of a community-based research study in the severely affected\u00a0CFS\/ME group.<\/p>\n

Design:<\/strong>
\nA two-phase clinical cohort study to pilot a series of investigations in\u00a0participants own homes.<\/p>\n

Setting:<\/strong>
\nParticipants were community living from the area defined by the Northern\u00a0clinical network of the UK.<\/p>\n

Participants:<\/strong>
\nAdults with either a medical or a self-reported diagnosis of CFS\/ME.<\/p>\n

Phase 1 involved the creation of a database.<\/p>\n

Phase 2: five participants\u00a0were selected from database, dependent on their proximity to Newcastle.<\/p>\n

Interventions:<\/strong>
\nThe De Paul fatigue questionnaire itemised symptoms of CFS\/ME, the\u00a0Barthel Functional Outcome Measure and demographic questions were\u00a0collected via postal return. For phase 2, five participants were\u00a0subsequently invited to participate in the pilot study.<\/p>\n

Results:\u00a0<\/strong>
\n483 questionnaire packs were requested, 63 were returned in various\u00a0stages of completion. 56 De Paul fatigue questionnaires were returned:\u00a0all but 12 met one of the CFS\/ME criteria, but 12 or 22% of individuals\u00a0did not fulfil the Fukuda nor the Clinical Canadian Criteria CFS\/ME\u00a0diagnostic criteria but 6 of them indicated that their fatigue was\u00a0related to other causes and they barely had any symptoms. The five pilot\u00a0participants completed 60% of the planned visits.<\/p>\n

Conclusions:<\/strong>
\nSeverely affected CFS\/ME individuals are keen to participate in\u00a0research, however, their symptom burden is great and quality of life is\u00a0poor. These factors must be considered when planning research and\u00a0methods of engaging with such a cohort.<\/p>\n

Strengths and limitations of this study<\/strong><\/p>\n