The National Institute for Health and Care Excellence (NICE) are updating their guidelines on ME. As part of this they have published a call for evidence about 3 topics. #MEAction UK has put together the following survey to provide further evidence for the committee.[maxbutton id=”22″ url=”https://forms.gle/ZXEdp7W5nW4KBBcu8″ text=”Take the survey” ]
The survey asks about advice given on managing your symptoms when you first spoke to a healthcare professional about your symptoms and your experience at ME/CFS clinics in the UK, including the treatments and advice provided. It also asks what you would have found most helpful in hindsight.
The deadline for responses is 7th October 2019.
We will continue to advocate for biomedical research funding so that areas including those under consideration can be studied to a high level of rigour, leading to high quality evidence based guidelines across the globe. However due to a paucity of ME research funding, there isn’t yet an evidence base that can adequately answer these questions.
This survey will add broader evidence of the experience of people with ME, balancing out the clinical judgment also being utilised to write these guidelines.
If you have a diagnosis of ME, CFS, or ME/CFS, please take the survey here.