ME in parliament
We work collaboratively to inspire action in order to end the ignorance, injustice and neglect experienced by people with ME.
We do this by meeting with parliamentarians and policymakers, providing written evidence and supporting them to raise issues important to people with ME. In doing so, we aim to facilitate more influence and create a better understanding of ME at local, national and international levels.
What is an APPG?
All-Party Parliamentary Groups (APPGs) are informal cross-party groups of MPs and Members of the House of Lords. They meet regularly to discuss, campaign and promote certain issues, in this case, ME. When effective, they are a great means of spreading awareness of an issue within Parliament and the media.
We have created a Frequently Asked Questions document which we hope can answer some of your questions. Please note our team are happy to answer any questions you see unanswered.
For further information on the APPG on ME, you can visit the newly created website. Please note, that this is not an official website of the House of Commons or the House of Lords. It has not been approved by either House or its committees. All-Party Parliamentary Groups are informal groups of Members of both Houses with a common interest in particular issues. The views expressed in these web pages are those of the group.
Rethinking ME
The APPG on ME spent over a year taking evidence from patients, healthcare professionals and charities to produce the Rethinking ME report. The report includes 20 recommendations that should be considered at the starting position for Government policy. The findings of this report highlight that there has been a long-term disconnect between the treatment deserved by people with ME and what they experience in reality.
“We view these recommendations as a starting point on which to build creative strategies across the governments of the UK, service providers and research institutions for the transformation of our society’s approach to ME. Furthermore, we wish to see the UK take a pioneering stance towards ME research and a compassionate attitude towards people with ME at a time when we are seeing an increasing trend in the development of ME-like symptoms as a result of Covid-19.
Evidence and consultations
Action for M.E. frequently provides evidence to the government to highlight how proposed policy changes would impact on people with ME. Our responses draw on a range of evidence from our previous reports, professionals, and people with ME and their carers. We often call for evidence through surveys or case studies, which can be instrumental in forming our responses.
In April 2020, we responded to inquiries by the Women and Equalities Committee and the Environment, Food and Rural Affairs Committee focusing on the impact Covid-19 and the lockdown has had on people with ME. We highlighted several important recommendations which should be adopted by the Government, including introducing:
- commitments that no one with a disability should go hungry due to difficulties in accessing food. This can be achieved through widening existing support to include those who are housebound or have mobility issues.
- commitments to ensure people with a health condition are not further disabled by society through the removal of essential safeguards and support.
- dedicated support by phone and email for those who are at increased risk of severe illness and/or are housebound with a disability to access timely advice and information relating to Covid-19.
Keep an eye on our news page for current opportunities to contribute evidence and feed into our responses.
Previous APPGs
At the inaugural meeting of the APPG for ME in January 2020, the group agreed to focus on the following key issues, and produce a report which can be used to lobby the Government to improve the lives of people with ME.
- Biomedical research, with a meeting on Tuesday 3 March 2020
- Children and young people with ME, with a meeting on Tuesday 16 June 2020
- Access to financial support and welfare benefits, with a meeting on Wednesday 7 October 2020
- Access to healthcare, with a meeting on Tuesday 17 November 2020
The group held its Annual General Meeting on Monday 19 April 2021, with a discussion focused on the impact of Covid-19 on the ME community.
The following meeting took place on Wednesday 24 November 2021, focusing on the new National Institute for Health and Care Excellence (NICE) guideline on ME and the future of medical care for people with ME.
