I know that this can be a painful and extremely debilitating condition, impacting on the quality of life of an individual.
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.
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 £2 million has been invested into this research area.
The majority of services for people with ME/CFS are the responsibility of local clinical commissioning groups. To assist diagnosis, the National Institute for Health and Care Excellence (NICE) produced clinical guidance on the diagnosis, treatment care and support of children and adults with ME/CFS.
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 expect to publish new guidelines on ME/CFS in 2020. I have been assured by my ministerial colleagues that these new guidelines will take into account patients' concerns about the PACE trials and the effectiveness of some existing recommendations. I believe, therefore, that it would not be appropriate for Ministers to interfere in its important work.
The debate today is not being voted on as it is just a debate but it will certainly raise the profile of this issue and I will be sure to follow up the points with ministers so we can improve the services on offer for those suffering from this debilitating condition.