The ME Association is asking people with ME/CFS and their carers to complete a questionnaire on their symptoms, treatments and feelings about management of their condition. They will be using the results to shape their recommendations to the Department of Health.
If you are a British ME sufferer or carer you can find a link to take to questionnaire online on their home page www.meassociation.org.uk
It took me around half an hour to complete on a go-slow :o)
Paper copies are also available on request from ME Association.
“To mark ME Awareness Month, The ME Association wants to hear from as many people as possible about their experiences – good or bad – of coping with ME.
To do this we 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.
We also want to build up the biggest ever picture of what happens when people are given cognitive behaviour therapy or graded exercise therapy – two controversial forms of treatment that have been recommended in a guideline produced by NICE.
We can then go back to the Department of Health with a really comprehensive nationwide picture of this illness, along with recommendations on how diagnosis and services can be improved.
The survey will be open until 31 August 2008. “