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ME Association, ‘What people with ME/CFS and their carers want from the UK’s health and social services’

During a period of over four months, which ended in September 2008, The ME Association (MEA) conducted a comprehensive questionnaire survey involving all aspects of ME/CFS management. Overall, 4,217 people took part making this the largest ever survey of patient and carer evidence on issues relating to ME/CFS management. The aim of the survey was to gather a wide range of patient and carer experience and evidence relating to all aspects of management. The survey also asked people what sort of services they wanted, which health professionals they wanted to see involved in their care, and where they wanted referral services to operate from. There was a separate section for carers. Much of the feedback, especially in relation to approaches such as pacing, Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET), is in line with previous questionnaires and anecdotal feedback, but some of the feedback is not. This obviously raises questions as to whether some of the generally accepted conclusions about management options, often based on less robust patient evidence, are correct. The results of the survey are set out in detail in this report, challenging some of the unpopular recommendations contained in the NICE guidelines.


To access this survey, please, click on the button below, which will direct you to the document in the ME Association website.

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