The most severely ill people with ME have nowhere to go, no treatment, no ward, no NHS service. They need a specialised service and virtual wards to be commissioned now! Your MP can help by lobbying Yvette Cooper, the new Secretary of State for Health and Social Care.

Our thanks to Julian Smith MP for responding to our #MillionsMissing campaign and listening to his constituent who used our tools and asked him to take action. He tabled the following questions and received stock responses.

In our 2024-2025 Annual Report we detail our campaigns, parliamentary and education work with #MEAction UK leading our campaigning in England and Wales and #MEAction Scotland focussing on campaigning and advocacy in Scotland.

Following the joint letter signed by MEAction UK and 58 charities and organisations, Long Covid Advocacy is continuing the dialogue on ME, Long Covid and evidence-based psychiatric education with the Royal College of Psychiatrists. www.longcovidadvoc.com/post/rcpsych...

We Have Responded to the Royal College of Psychiatrists

Continuing the dialogue on ME, Long Covid and evidence-based psychiatric educationAudio on Substack In June, the Royal College of Psychiatrists responded to our open letter concerning the framing of Long Covid at the Royal College of Psychiatrists International Congress.We welcomed the opportunity to receive a formal response. Rather than replying immediately, we took time to consult with many of the charities, organisations, clinicians, researchers and patient advocates who supported our origin

longcovidadvoc.com

We are excited to share the Severe ME Artists Project 2026 from #MEAction in recognition of Severe ME Day on August 8th. #SevereME #MyalgicEncephalomyelitis www.instagram.com/p/DZu4KevjCJu/

Published in March this year, 'What is Myalgic Encephalomyelitis Like?' is a co-production between the WIMEL writers group (part of @pillowwriters.bsky.social) and the @batemanhornecenter.bsky.social

@andyburnham.bsky.social always speaks about fairness and standing up for people who are overlooked.

Our thanks go to Baroness Scott of Needham Market for yesterday’s debate on severe ME and for speaking so eloquently about the plight of people with ME, We are grateful to Lord Evans of Rainow, Baroness Walmsley and Lord McCrea of Magherafelt and Cookstown for advocating for

House of Lords - Severe ME Debate

Coverage of the debate in the House of Lords on the treatment of severe myalgic encephalomyelitis, on Thursday 18 June.

bbc.co.uk

The House of Lords session to debate the treatment of, and research into, severe myalgic encephalomyelitis starts at 11am today, although the full debate is expected this afternoon.

Parliamentlive.tv

House of Lords

shorturl.at

We share another heartbreaking image of someone with very severe ME. Please share our video, contact your MP to ask them to lobby @jamesmurrayldn.bsky.social about the harm that people with very severe ME are suffering due to a lack of NHS care?

Can you share these heartbreaking images and our video and contact your MP to ask them to lobby @jamesmurrayldn.bsky.social about the harm that people with very severe ME are suffering due to a lack of NHS care? Could your family and friends join you in tagging, messaging and sharing our call?

Long Covid Advocacy are asking people to share the text and link below today to demonstrate support for Long Covid Advocacy's recent open letter to the Royal College of Psychiatrists.

The most severely ill people with ME used their energy to share their heartbreaking images. Can you use some to contact your MP to ask them to lobby James Murray about the harm that people with very severe ME are suffering due to a lack of NHS care?

***HELP CAROLINE GET THE SPECIALIST CARE SHE URGENTLY NEEDS*** Warning: post contains details of a person suffering from very severe ME.

Have you contacted your MP to ask them to lobby @jamesmurrayldn.bsky.social Please let us know if you have received a supportive answer, admin@meaction.org.uk. There is still time. Tag & lobby your MP and James Murray? shorturl.at/I7Rwk Thank you. ❤️ #MyalgicEncephalomyelitis #VerySevereME

We are proud to be one of the 58 orgs & 1200 individuals to sign this open letter regarding the framing of Long Covid in the Royal College of Psychiatrists 2026 International Congress

Open Letter Update: Solidarity, Engagement, and Next Steps

The response has been extraordinary. To date, the letter has received 1,200 individual signatories and the support of 58 organisations, including clinicians, researchers, patient advocates, and members of the public. This reflects a clear and growing call for scientific rigour, respectful discourse, and appropriate representation of evidence in discussions of IACC (infection-associated chronic conditions).

longcovidadvoc.com

People with very severe ME are suffering due to a lack of NHS care. They need your help. Can you share our images & video, tag & lobby your MP and @jamesmurrayldn.bsky.social? Ask family & friends to join you. Find out how shorturl.at/I7Rw #MyalgicEncephalomyelitis #VerySevereME

Karen Gordon bravely took part in our video that lit up London for the very severely ill and now she needs your help.

Stop the harm, Stop the deaths, Start the service Share this video - lobby your MP and @jamesmurrayldn.bsky.social Find out how here shorturl.at/I7Rwk Let’s make our voices heard! #MyalgicEncephalomyelitis #VerySevereME youtu.be/YoCT_K66Ul0

Lighting up the darkness for ME. #MEAction UK took to the streets of London to urge James Murray, the Secretary of State for Health and Social Care, to listen to the most severely ill people with ME. We need the immediate setting up of NHS specialised care to prevent more suffering and deaths.

More than light - voice for the voiceless. Last night, #MEAction UK took to the streets of London to urge @jamesmurrayldn.bsky.social to listen to the most severely ill people with ME & set up NHS care. Lobby your MP!

We have asked you to contact your MP using our advocacy guides (link to our full guide shorturl.at/9lhU7 or to our shorter guide here shorturl.at/pxwux). This is showing results so please keep doing it if your energy allows..

We have asked you to contact your MP using our advocacy guides (link to our full guide shorturl.at/9lhU7 or to our shorter guide here shorturl.at/pxwux). This is showing results so please keep doing it if your energy allows..

Our thanks to everyone who took part in Blue Sunday 2026 and for raising £400 for MEAction UK. #MillionsMissing

Liz Jarvis, Liberal Democrat MP for Eastleigh asked question below. Ther response is there is still no plan for the very severe . They have to stop the harm, stop the deaths, start the service for the #MillionsMissing now! Thanks to TheyWorkForYou.

ME/CFS: Health Services

Department of Health and Social Care written question – answered at 27 May 2026

theyworkforyou.com

#ThereForME co-founder, Karen Hargrave, speaks very powerfully to to @theipaper.com about the financial costs of caring for someone with very severe ME, the lack of help available and the stress and anxiety this causes. #MyalgicEncephalomyelitis #HealthEquality

My husband's care costs have reached £65,000 - we've had to sell our flat

Karen Hargrave says she and her husband probably have a year before their savings run out 

inews.co.uk

Listen to Emma Barnett's interview with former Team GB rower and #ThereForME team member, Oonagh Cousins about her experience of living with ME following Long Covid Oonagh was pre-selected for the Tokyo Olympics before her career was cut short by Long Covid, which she contracted in March 2020.

Ready to Talk with Emma Barnett - Long Covid Stole My Olympic Dream with Oonagh Cousins - BBC Sounds

Oonagh Cousins was selected for Team GB, then Long Covid ended her Olympic hopes.

bbc.co.uk

We have asked you to contact your MP using our advocacy guides (link to our full guide shorturl.at/9lhU7 or to our shorter guide here shorturl.at/pxwux). This is showing results so please keep doing it if your energy allows..

We have asked you to contact your MP using our advocacy guides (link to our full guide shorturl.at/9lhU7 or to our shorter guide here shorturl.at/pxwux). This is showing results so please keep doing it if your energy allows.

Thanks to everyone who took part in 𝗕𝗹𝘂𝗲 𝗦𝘂𝗻𝗱𝗮𝘆 𝟮𝟬𝟮𝟲 - 𝘁𝗵𝗲 𝘁𝗲𝗮 𝗽𝗮𝗿𝘁𝘆 𝗳𝗼𝗿 𝗠.𝗘, especially if you donated to MEAction UK. We are grateful to you all. ❤️ Our donation link is still open: www.totalgiving.co.uk/appeal/BlueS...