Results of probably the largest-ever survey of opinion among people with ME/CFS and their carers about what treatments and therapies work for them and what don't are available here for downloading. The survey also shows what people with the illness want from their health and social care providers. They are contained in a 32-page report called ‘Managing my ME', which was published by The ME Association on 27 May 2010.
The survey – carried out online and through a paper questionnaire by the ME Association in the summer of 2008 – attracted huge interest when the questionnaire was held open online for over four months. A total of 3,494 people answered the questions online. Another 723 completed the paper questionnaire after it was circulated with our quarterly ME Essential magazine.
The results will form part of our submission to the National Institute for Health and Clinical Excellence (NICE) when they review their current guideline on ME/CFS. NICE are expected to carry out the review later the year.
And they were part of our evidence submitted to the recent inquiry into the state of NHS services for people with ME/CFS in England carried out by the All-Party Parliamentary Group on ME. Key findings from the MEA survey were inserted into the final APPG report.
A paper copy of the survey results is included with the latest issue of ME Essential, which is being mailed out to members tomorrow (Friday, 28 May).