As part of Carers Week 2026, The ME Association was proud to represent the ME/CFS community at a key parliamentary event held at Portcullis House, Westminster, on Wednesday 10 June.
The annual event brought together MPs and Peers from across the political spectrum, creating an important platform to raise awareness of caring, highlight the challenges faced by unpaid carers, and recognise the invaluable contribution they make to families and communities across the UK.
Bringing the ME/CFS community to Westminster
Representatives from The ME Association were joined by carer Yvette Jackson, who supports her husband Andrew – a fourth-generation farmer from Cumbria who was diagnosed with ME/CFS 13 years ago. Their presence brought a powerful, personal perspective to the event, helping to illustrate the realities of living with, and caring for, someone with condition.
Throughout the day, we engaged with MPs and Peers to advocate for carers’ rights, highlighting the life-changing impact ME/CFS can have not only on those diagnosed, but on the families and loved ones who provide ongoing care. We raised awareness of this complex and often misunderstood condition, the work of The ME Association, and our continued commitment to improving support for those affected. We also had the opportunity to provide insight into the ground-breaking research we lead including the Rosetta Stone study, the largest ever single investment in biomedical research by any charity in this field.
Sharing lived experiences of caring
Yvette and Andrew generously shared their lived experience, offering first-hand insight into the daily challenges of caring for someone with ME/CFS. They spoke about the difference that strong, supportive communities can make, and their experiences of farming with a chronic condition – all points that resonated strongly with policymakers in attendance.
We are incredibly grateful to Yvette and Andrew for giving their time and voice to this important cause. Their contribution helped ensure that the realities of ME/CFS and the needs of carers were clearly heard at a government level.
Raising awareness with MPs and Peers
Encouragingly, more than 30 MPs attended the event, and we spoke with many who showed genuine interest in better understanding ME/CFS and its impact. Here is a selection of just some of the MPs who visited The ME Association stand:
- Tessa Munt MP for Wells and Mendip Hills, Chair of the APPG on ME
- Julie Minns MP Carlisle
- John Lamont MP Scottish Borders
- Tom Morrison MP for Cheadle, APPG on ME Member
- Tim Farron MP Westmorland and Lonsdale, APPG on ME Member
- Peter Dowd MP Bootle
- Lorraine Beavers MP for Blackpool North and Fleetwood
- Liz Twist MP for Blaydon and Consett (northeast)
- Debbie Abrahams MP for Oldham East and Saddleworth
The event proved invaluable as an opportunity to connect directly with MPs and Peers, opening up meaningful conversations about ME/CFS and the realities faced by unpaid carers. The level of engagement and interest we received was incredibly encouraging, and we look forward to building on these discussions. We will be following up with those we met to continue raising awareness, strengthen relationships, and ensure the needs of the ME/CFS community and carers remain firmly on the political agenda.
Other organisations joining The ME Association at this Parliamentary event included Age UK, Carers Trust, Carers UK, MND Association, Rethink Mental Illness, and The Lewy Body Society.