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Myalgic Encephalomyelitis (ME)

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Thank you for contacting me about ME/Chronic Fatigue Syndrome. 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.
 
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 £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.
 
I entirely understand the concerns raised on the alleged medical abuse of sufferers of ME/CFS. ME is often a difficult and frustrating condition, which can be hard to understand and treat. I know that the Government takes the safety and wellbeing of patients incredibly seriously, and I believe that doctors and nurses put their patients' best interest at heart, and that it would be inappropriate to call for an inquiry into the treatment of ME sufferers over the years. I hope you agree that the Government is listening to campaigners, as NICE updates its guidelines on treating ME/CFS, and I know that they will examine all new evidence on the efficacy of different treatments for ME/CFS.
 
Thank you again for taking the time to contact me.

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Pauline Latham OBE MP Conservative MP for Mid Derbyshire

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