The next meeting of the All-Party Parliamentary Group on Myalgic Encephalomyelitis (APPG on ME) will take place from 2 – 3 pm on 24 November 2021.
This meeting will focus on the new National Institute for Health and Care Excellence (NICE) guideline on ME and the future of ME medical care.
Three expert guest speakers will address the APPG and answer questions:
Dr Paul Chrisp, Director of the NICE Centre for Guidelines
Dr Peter Barry, Chair of the NICE ME/CFS Guideline Committee
Sonya Chowdhury, Chief Executive of Action for ME
This meeting will be an excellent opportunity for MPs and Peers to discuss the new NICE guideline which is expected to be transformational for ME patients across the UK due to the removal of support for damaging treatments such as graded exercise therapy (GET).
Discussion points for the meeting will include the guideline review process, the delay to the release of the guideline, the recommendations of the new guideline, and next steps for guideline implementation.
The overall aim of the meeting will be to raise awareness amongst MPs and Peers of the issues facing people with ME in the UK, in line with the APPG purpose which is to seek to improve health, social care, education and employment opportunities for ME sufferers and encourage biomedical research into the cause and treatment of ME.
If an MP or peer wishes to attend, they can contact Carol Monaghan MP, Chair of the APPG on ME, by email at carol.monaghan.mp@parliament.uk.
Carol Monaghan will be able to provide further information on the meeting and zoom details.
If you wish to contact your MP but do not know who represents you then you can use this online tool
This APPG meeting provides an excellent opportunity for people to contact their Westminster MP about any issue relating to the new NICE guideline that they would like to see their MP raise
In particular, you may wish your MP to raise the local situation regarding implementation of the new guideline recommendations at your local hospital or community based referral service/clinic – if there is one
Or to highlight the fact that no local ME/CFS referral service currently exists
Please note that while health policy is devolved to the regional governments in Scotland, Wales and Northern Ireland, NICE is the official source of clinical guidance in England, Wales and NI
The official source of clinical guidance on ME/CFS in Scotland is the Scottish Good Practice Statement – which I helped Dr Gregor Purdie with during the very early stages of preparation
A statement from NHS Scotland indicates that they plan to review the SGPS following publication of the new NICE guideline