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.

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 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

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

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.

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, [email protected]. 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

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! More locations, photographs and videos coming soon! shorturl.at/NiQ90#MEAction#MillionsMi

Learna’s free, highly rated, CPD-accredited module on ME, available for GPs and healthcare professionals, has been updated to reflect evolving biomedical understanding of ME.

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.

#ThereForME co-founder, Karen Hargrave, speaks very powerfully to to @theipaper.com#ThereForMEabout 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

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.

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...

Following the appointment of the new Scottish cabinet, #MEAction Scotland would like to hear from anyone who is represented by either Angela Constance or Maree Todd. Angela Constance, the new Cabinet Secretary for Health and Care, is the MSP for Almond Valley.

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 has contacted their MP to tell the new Health Secretary, @jamesmurrayldn.bsky.social that the most severely ill people with ME have nowhere to go, no treatment, no ward, no NHS service.

On Monday 18th May, @actionforme.bsky.social ME launched the PRIME ME/CFS Research Involvement Hub, a major new initiative placing people with lived experience of ME at the heart of research.

At #MEAction Scotland, we want to make sure that our work reflects the needs and experiences of the whole ME community across Scotland. Our campaigning work is run by a small core team of volunteers who meet weekly.

Dr Nicola Clague-Baker, co-founder of Physios for ME, needs the help of people with ME. She is working on developing simulation training for health care professionals caring for patients with #SevereME and #LongCovid in hospital 👇🏼

There's still time to email your MSP(s) as part of #MEAction Scotland's ME Awareness Week campaign. We've already had some very encouraging responses from MSPs whose constituents have contacted them.

Good news for #WorldMEDay. Gov invests £4.75m in research. Congratulations to Action for ME, The University of Edinburgh, Decode ME Study, Oxford Nanopore Technologies, and the European Bioinformatics Institute (EMBL-EBI). www.gov.uk/government/n...#WorldMEDay#MilionsMissing #MEAwarenessWeek

This year, #MEAction Scotland will be running an email campaign aimed at MSPs during ME Awareness Week (11th-17th of May). Last year, in the final budget of that parliament, the Scottish Government earmarked £4.5 million

As part of their #MillionsMissing campaign this year, #MEAction UK are asking people to lobby their MPs on behalf of those with Severe or Very Severe ME.

The The Neurological Alliance of Scotland has asked us to share a survey being undertaken by The Migraine Trust to find out about people's experience of accessing migraine treatments. The survey should take approximately 20 minutes to complete.

NHS Lothian are setting up a new group for people with lived experience of ME and Long Covid, with the aim of helping to inform and shape future services. The group will be an online group and will be open to people in NHS Borders, NHS Fife, NHS Forth Valley as well as NHS Lothian.

#MEAction Scotland is pleased to report that, after lots of hard work including attending party conferences, meeting with all the major political parties and sending numerous emails, we have secured pledges on ME in three party manifestos. #MyalgicEncephalomyelitis #HealthEquality

As the 12th May is the first day of the newly elected parliament will meet, #MEAction Scotland will be running an email campaign aimed at MSPs during ME Awareness Week, which this year runs from the 11th-17th of May. #MyalgicEncephalomyelitis #MillionsMissing #MEAwarenessDay

𝗜𝘁'𝘀 𝘁𝗶𝗺𝗲 𝘁𝗼 𝗴𝗲𝘁 𝗿𝗲𝗮𝗱𝘆 𝗳𝗼𝗿 𝗕𝗹𝘂𝗲 𝗦𝘂𝗻𝗱𝗮𝘆 𝟮𝟬𝟮𝟲

BBC Radio 4 Feedback full segment. Listeners share their concerns about Dr Suzanne O’Sullivan’s claim that #LongCOVID is psychosomatic. Includes an interview with @NickyProctor (11 mins) youtu.be/Du4devaRH5w?...

Despite the fact that the DHSC's own final delivery plan (published July 2025) highlighted the URGENT need for specialist services for those with very severe ME #MyalgicEncephalomyelitis #VerySevereME #HealthEquality

Ask your MP to put a health quesiton down on why the DHSC have paused action on commissioning a specialised service for very severe ME/CFS until April 2027 at the earliest.

The DHSC paused action on commissioning a specialised service for very severe ME/CFS until April 2027 at earliest. This isn’t acceptable @rthonwesstreeting.bsky.social! Sign up for our mailing list meaction.org.uk/sign-up for more news. #MyalgicEncephalomyelitis #VerySevereME

Another heartbreaking case of a very severe ME sufferer. Tomos is in Wales but there is nowhere treating the very severe anywhere in the UK. www.bbc.co.uk/news/article... #MyalgicEncephalomyelitis #VerySevereME

Children and young people may grieve changed abilities, missed milestones, friendships that slip, and a “before” life. Want to know how to help? Download this toolkit ➡️ bit.ly/4qCMCkL

In an election year, speaking to prospective parliamentary candidates is more important than ever. Last weekend, our volunteers spoke to three PPCs @snp.org Spring conference - @thewliss.bsky.social Kate Campbell and Steven Bonnar #MyalgicEncephalomyelitis #HealthEquality#MyalgicE#MyalgicE