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Principal Investigator
George Lewith
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1 September 2017 to 30 June 2018

Project No: 370

Funding round: FR 13

How people with CFS/ME want to be supported 

Chronic fatigue syndrome (CFS; sometimes called myalgic encephalomyelitis or ME) is a chronic condition which causes severe fatigue (that does not get better with rest) and includes other symptoms such as headaches and muscle pain, and problems with sleep, memory and concentration. CFS/ME is not well understood, sometimes doctors disagree with CFS/ME charities about its causes and how to treat or manage it: this can be confusing for patients. However, it is clear that people with CFS/ME need support with many aspects of their life and health. The limited treatments on offer are not effective and/or acceptable for all people with CFS/ME. Some patients report that treatments thought to be effective by experts (e.g. graded exercise therapy) can make them worse. Research based on interviewing people with CFS/ME is vital to our understanding of the experiences and needs of patients -  what it’s like to really experience the condition; the problems with getting a diagnosis and treating CFS/ME; and how and why doctors and patients may have different views of CFS/ME. There’s limited understanding of how to best support people with CFS/ME, whether in medical consultations, social care or everyday life.  In this study, we plan to find studies that have used interviews and group discussions to specifically examine how people with CFS/ME experience different kinds of support, the support they need, and any preferences that they express for informal, health or social support. We will use a method known as ‘meta-ethnography’ to thoroughly search for published studies, and assess and combine their findings to help us to develop a solid understanding about the best ways of providing support to people with CFS/ME. It is necessary to understand approaches to support that patients themselves find useful to develop better CFS/ME care in the future.

Amount awarded: £25,644

Working groups for FR16

Ageing and the health and care of older people
Louise Robinson

Brief behavioural and psychological interventions
Kieran Ayling 

Conversation analysis
Alice Malpass 

Digital health working group
Nadia Jackson 

Involving patients and families in improving the quality & safety of healthcare
Susan Hrisos 

Mental health
Carolyn Chew-Graham or Rachel Duncan 

Alice Malpass 

Patient and public involvement
Emma Palmer-Cooper