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On Wednesday (11.06.25), a team of people from the ME Association attended a parliamentary drop-in event as part of Carers Week 2025.
Held at Portcullis House, Westminster, the MEA had the opportunity to meet MPs and Peers to highlight ME/CFS and the inequalities that unpaid carers face.
New research in the form of a report – Caring About Equality – for Carers Week 2025 found that 43% of current or former carers have seen a mental or physical health condition develop or become worse since taking on a caring responsibility for someone.
About the Carers Week event
The ME Association had an exhibition booth at this year's the Carer's Week Parliamentary Drop-In Event and a team attending of Mike – Trustee and Carer, Paul – Policy and Public Affairs Consultant, Pam Shepherd – Carer and Rachel – Communications Team.
The ME Association were one of nine organisations at the event, along with Age UK, Carers Trust, Carers UK, MND Association, Oxfam GB, Rethink Mental Illness, The Lewy Body Society and TSB Bank plc.
We had the privilege of representing the MEA and advocating for carers' rights to the MP's we met over the course of the afternoon. We were able to tell them more about ME and the impact it has on people's lives, the struggle to get a diagnosis, the impact on the lives of carers and family members. We also had the opportunity to talk about the work that the MEA get to do in raising awareness and funding ground-breaking research.
A number of the MP's we spoke to were already concerned about ME and about the role of carers, along with the vital need for benefits in order to look after and support their families.
We were asked what one thing they could take away or they could action for us, and we spoke to them about the APPG and the vote regarding PIP changes.
The MEA spoke with over 20 MP's or their representatives at the event, and saw many more. The following MPs got their photos at our stand:
- Sir Ed Davey, Lib Dem Leader, and MP for Kingston and Surbiton
- Iqbal Mohamed, Independent MP for Dewsbury and Batley
- Marsha de Cardova, Labour MP for Battersea
- Yasmin Qureshi, Labour MP for Bolton South and Walkden
The day was a valuable opportunity to network with those responsible for affecting change and we will be following up with the MPs for further action.
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APPG on ME and Long Covid
The MEA team spoke to many parliamentarians making a number of connections and encouraged MPs to attend the All Party Parliamentary Group (APPG) on ME [1] and for the APPG Long Covid [2].
N.B. The chair is MP Jo Platt and her email is jo.platt.mp@parliament.uk
The last APPG (14.05.25) was a joint meeting and had a number of presentations as listed below:
- Similarities and differences between ME and Long Covid – Prof David Strain, Health Research Advisor, Gov
- Where are we now – ME research & DecodeME results – Prof Chris Ponting, Edinburgh University
- Where are we now – LC research & React results – Prof Danny Altmann, Imperial College
- Dr Binita Kane, Manchester University Foundation Trust
Welfare Reform
The ME Association is actively challenging the government’s proposed welfare reforms and has launched a major project to defend the rights of people with ME and Long Covid.
We will shortly be publishing a formal position statement, meeting directly with key policymakers including the Minister for Disabled People, and launching a national survey to gather vital evidence from our community.
This work is a priority for the charity, and we’re committed to ensuring the specific needs and experiences of people with ME and Long Covid are clearly represented and heard.
The MEA team spoke to parliamentarians about the issue surrounding Welfare Reform. Many risk losing their benefits due to new rules that fail to reflect the reality of living with a fluctuating* condition — where symptoms are always present yet can change unpredictably in severity from day to day or even hour to hour, making daily functioning highly inconsistent.
*N.B. Where the use of the word ‘fluctuating' is used, this is to align with DWP terminology.
Further information
- Carers Week 2025 Report: Caring About Equality | 9th June 2025
- Carers Week 2025: 100 MPs and Peers show their support for unpaid carers at Carers Week event in Parliament | 12th June 2025
- The ME Association: Ask your MP to join the joint meeting of the APPG on ME and APPG on Long Covid | 24th April 2025
- 1. APPG on ME Website
- 2. APPG on Long Covid Information