I know that ME can be a painful and extremely debilitating condition, impacting on the quality of life of an individual. There are 13,000 people in Wales who are thought to suffer from ME/CFS, and 70 per cent of these are women.
While I understand that there is currently no cure for ME/CFS, I am aware there are treatments that may help to ease symptoms, although no one form of treatment may suit every patient. Patients should be involved in decision-making throughout every stage of their care. Furthermore, patients should be offered information about local and national self-help groups and support groups for people with ME/CFS and their carers.
I believe that research into this area is vital. The Medical Research Council (MRC) and the National Institute for Health Research welcome high quality applications for research into all aspects of ME/CFS. ME/CFS research is a current MRC priority area and so far over two million pounds has been invested into this research area.
In Wales, health boards are responsible for providing services for those living with ME/CFS. However, while there are some dedicated ME/CFS services, including the Betsi Cadwaladr University Health Board ME/CFS service, the majority of other health boards align ME/CFS with pain services. Depending on their location, health boards have the option to utilise specialist centres for ME/CFS. In England there are hospital-based referral services for those with ME/CFS, but unfortunately there are no such hospital-based services in Wales.
You may be interested to know that NICE is currently reviewing these guidelines. This process will require thorough and careful consideration, and I understand that NICE expects to publish new guidelines on ME/CFS in December 2020.