I have previously spoken to the Health Secretary about ME/CFS, after concerns were raised by constituents about the availability of support. A friend of mine has suffered with ME all her life, so I am aware of how incredibly debilitating it can be. I was reassured to hear he understands the hidden misery of sufferers and that more work needs to be done to equalize people's understanding of the condition.
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 and offered information about local and national self-help groups and support groups for people with ME/CFS and their carers.
I believe research into this area is absolutely vital so I am pleased to report that the Medical Research Council (MRC) and the National Institute for Health Research welcome 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.
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.
As you know, 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 am afraid existing commitments meant I could not attend the debate yesterday, but having caught up with the debate summary, I was pleased to hear the Minister outline the steps being taken by the Department for Health to improve treatment and research. If you were not able to catch the debate, it is available here - https://hansard.parliament.uk/commons/2018-06-21/debates/A49A6117-B23B-4E35-A83B-49FEF0D6074F/METreatmentAndResearch