Forward ME has launched a survey, having been asked by the National Institute of Health and Care Excellence (NICE) to gather evidence and experiences of Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT). NICE has recently started the process of reviewing (and ultimately replacing) the guideline on M.E./CFS Diagnosis and Management. As part of this process Forward ME welcomes the opportunity to ensure that the views of the patients are taken into account at an early stage.

The survey focus is deliberately narrow and concentrates solely on GET and CBT, a key issue for people with M.E./CFS. It 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 this questionnaire is the 31st January 2019, to meet the timeframe set out by NICE. This unfortunately 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 Countess of Mar, Chair of Forward ME said “We are very pleased that the newly formed NICE Guideline Development Group (GDG) have indicated that they want to work closely with charities representing people with ME. They have requested further evidence of outcomes and consequences of CBT and GET in patients with ME. Although both the ME Association and Action for M.E. have previously carried out surveys of their members, Forward ME have been asked if they will conduct a survey which will reach as many M.E. sufferers as possible in order to provide the GDG with up-to-date results.”

The survey is designed for adults and children who have been diagnosed with myalgic encephalomyelitis (M.E.), chronic fatigue syndrome (CFS), M.E./CFS, or post-viral fatigue syndrome (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.

The Countess of Mar continues “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 GDG to reach informed conclusions that will be the basis of their recommendations for the new M.E. guideline.”

Take the questionnaire here before the 31 January

ME Research UK CEO, Simon Phillips, welcomed the launch of the survey and added