ME/CFS Society of WA: ME Association (UK) Survey

The ME Association (UK) is calling on people with ME/CFS to help them with a survey on how well they cope with the disease.

The ME Association wants to hear from as many people as possible about their experiences – good or bad – of coping with ME/CFS.

They have produced a questionnaire which asks about treatments that work, treatments that don’t work, and what people want when it comes to GP and hospital based services.

They also want to build up the biggest-ever picture of what happens when people are given cognitive behavior therapy or graded exercise therapy – two inappropriate and controversial forms of treatment that have been recommended in a guideline produced by NICE (National Institute for Health and Clinical Excellence) in the UK.

The ME Association will use the data collected to provide feedback to the UK Department of Health with a really comprehensive picture of ME/CFS, along with recommendations on how diagnosis and services can be improved.

The ongoing confusion and misunderstanding surrounding ME/CFS in the UK, the low standard and poor quality of government funded research and the provision of ineffective and potentially harmful treatments to people affected by the disease have a wide ranging and worldwide impact. The Society encourages as many people as possible to complete the questionnaire.

An electronic version is available on homepage of The ME Association website at www.meassociation.org.uk