Dr Charles Shepherd, Hon. Medical Adviser, ME Association.
The survey has now closed (31 January 2019)
We would like to thank everyone who took part. A total of 2,310 people completed the survey and the responses are now being analysed by Oxford Brookes University before being sent to the NICE Guideline Review Committee.
The Forward ME group of charities has been asked by NICE to gather further evidence and experiences of Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) from people who have a clinical diagnosis of ME/CFS/PVFS and who were resident in the UK.
Commenting on the survey, the Chair of Forward ME group, the Countess of Mar, said:
“We are sure that you will recognise how important it is that the new NICE guideline reflects the real situation of people with ME and that, by completing this survey you will be helping the committee to reach informed conclusions that will be the basis of their recommendations for the new guideline.”
The survey will be independently analysed by a team from Oxford Brookes University, before being submitted to NICE at the end of February.
The deadline for completing the questionnaire is the 31st January 2019, to meet the very narrow timeframe set out by NICE.
Unfortunately, this also means that Forward ME do not have the time or capacity to send out/accept paper copies. We will make it very clear to NICE when we submit the report that those unable to complete the survey online, including many severely affected people, have not been able to take part.
The survey is however designed to allow a carer, parent or another person to fill it in on behalf of someone else if they are unable to do this themselves.
The survey is designed for adults and children who have been diagnosed with ME, CFS or PVFS and who have undertaken or were offered CBT or GET in the UK since 2007. All responses collected in this survey will be anonymous.
You can find the survey, HERE or click the image above.
I applaud the initiative which as produced this survey, and I’m grateful to everyone who has worked to bring it about.
However, I have no confidence that it will make any difference. NICE, and every other statutory body, habitually ignores the results of ‘consultations’. “Thankyou for your views – now don’t worry your little head. We know what’s best for you – just trust us and all will be well.”
I speak from 18 years of bitter experience – I just don’t trust NICE, the CCG, the CQC, etc any more.