WAMES survey – NICE guidance in Wales
We need more responses to the survey if we are to have meaningful discussions with GP leaders and the NHS about the information – or lack of information – that GPs have been giving to patients with suspected ME/CFS.
Closing date extended to the end of Sunday 8th August 2021
If your GPs have not offered information about ME or you have stopped asking because you haven’t received helpful information in the past, then we still need to hear from you!
NICE 2007 advised your GPs to tell you:
- ME/CFS should be diagnosed after 4 months of symptoms in adults & 3 months in children
- The key CFS/ME symptom is new disabling fatigue that gets worse after gentle exercise, with PEM as a possible additional symptom.
- all the relevant options for managing your CFS/ME’
- they would work with you to develop a ‘care plan’ (i.e. a health management plan)
- there is a likelihood of relapses / setbacks
- you should have planned, regular reviews of how your condition is being managed
We hope your participation will help us to raise these questions for discussion with doctors’ leaders and NHS Wales:
- If GPs didn’t use the old NICE guidance, will they be prepared to use the new guidance? What can be done to improve usage?
- If GPs did use the old guidance then why did many people not find help and what can be done about that?
- Were some recommendations followed and others not used? If so, what were they and why?
We have kept the questionnaire simple and as short as possible to make it easy to take part. Some people may not be able to answer all the questions because their diagnosis took place before 2007, or they never found a GP to give them a diagnosis. Please give us as much information as you can for the years 2007-2021 and let others know about the survey. (whether to not you agreed with the old NICE guidelines!)
You may also have particular experiences you feel we and the NHS should know about. Please add them where comment is invited or contact us separately. Your responses will be included in a report and used in discussions on how the 2021 NICE guidance can help improve healthcare for people with ME in Wales.