The All-Party Parliamentary Group on Myalgic Encephalomyelitis (ME) is a cross-party group of Members of Parliament and the House of Lords seeking to improve health, social care, education and employment opportunities for people with ME and accelerate biomedical research into the cause and treatment of ME.
draft Minutes of APPG 17 Dec 2024
Forming an All Party Parliamentary Group is not simple but is highly beneficial to a cause to have a forum where legislators and interested parties can meet and act within the seat of government. On 17th December 2024 a new APPG on ME held its inaugural meeting and was subsequently entered on the Register of APPGs. MP Jo Platt was proposed and confirmed as Chair – office bearers being Tessa Munt MP, Lord Offord of Gavel, and Debbie Abrahams MP and memebers being MPs Bradley Thomas, Louise Jones, Luke Charters, Rachel Maskell and Paul Waugh together with a member of the House of Lords – Baroness Scott of Needham Market.
Action for ME is recorded as providing the Secretariat with the financial support of the ME Association.
Areas of action as recorded in the draft Minutes encompass
- Engagement with Health and Social Care Select Committee: The Health and Social Care Select Committee’s call for inquiry topics is open until 17th January and a desire to secure an inquiry on ME/CFS. The Secretariat will lead on establishing the submission.
- APPG inquiry into Severe ME: the former APPG commenced this work with a Panel that undertook the first hearing from people with lived experience. The new APPG wishes to continue this and to produce an appended chapter to the former APPG’s report Rethinking ME with some clear, tangible actions for the APPG to drive forward.
- Final Delivery Plan for ME: exploring the APPG’s role in supporting and ensuring implementation when launched.
- Securing a Westminster Hall Debate.
- Ensuring appropriate questions and engagement in debates to ensure the impact for people with ME is highlighted.
- Focus on services and support for people with ME alongside addressing stigma that still pervades in some places and the need for education.
- Ensuring implementation of the NICE Guideline as it is clear that it has been patchy and important that support across all disciplines is provided.
- Leveraging research for ME and overlapping illnesses including Long Covid where people have ME-like symptoms. It was also acknowledged that there are other illness areas where there are co-morbidities and the APPG should seek to maximise opportunities to synergise with these.
- Need for the cost to the economy calculation to be updated to include updated numbers of people with ME and those with ME-like symptoms. This is particularly pertinent given the government’s focus on supporting people back to work (while also acknowledging that many people with ME are too ill to work). Action for ME is currently trying to secure funds for this.
- DWP White Paper and ensuring the experience of people with ME is highlighted and considered.
- Guidelines on ME did not provide any detailed guidance at all on how severe ME should be managed at home or in the community and in particular whether or not there is any necessary adaptation needed to the 2017 guidance on Nutrition support for adults : oral nutrition support , enteral tube feeding and parenteral nutrition.
The APPG is expected to meet quarterley.
