14 JUN 2018
ME and EDM 1247
Thank you very much for taking the time to email me about ME and EDM 1247.
I understand you would like me to sign EDM 1247, however like many MPs I do not sign any EDMs no matter how worthy the cause. This is because EDMs now cost a huge amount per year to administer and have no chance of changing the Law. They are in effect petitions which only MPs can sign. They have also been superseded by online petitions which can be on any issue for which the Government or Parliament is responsible and any which receive 10,000 signatures will receive a response from the Government. Those petitions which reach 100,000 signatures will almost always be debated in Parliament – unless it is an issue which has recently been debated. There are also concerns that EDMs may give a false impression that action is being taken.
Nonetheless, I hope the following information on this topic from the Department of Health is reassuring:
There is currently no cure for ME/CFS, 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.
NICE is currently reviewing these guidelines. This process will require thorough and careful consideration, and NICE expect to publish new guidelines on ME/CFS in 2020. These new guidelines will take into account patients' concerns about the PACE trials and the effectiveness of some existing recommendations.
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