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MEAction UK

@meactionuk.bsky.social
242 followers 59 following 218 posts

Our movement fights for recognition, education, and research so that one day all people with ME (myalgic encephalomyelitis) will have access to rapid diagnosis, and compassionate, effective care.

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MEAction UK @meactionuk.bsky.social · 03/10/2026
Watch David Tuller's interview with George Monbiot using the link below. Last week, George Monbiot, the British investigative journalist and longtime contributor to The Guardian, published a corker of a column about the mistreatment and abuse of people with ME/CFS, including those with Long COVID.
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MEAction UK @meactionuk.bsky.social · 24/09/2026
Please read and share @georgemonbiot.bsky.social column about the ongoing mistreatment of people with ME. Can we break through the wall of indifference? #MyalgicEncephalomyelitis #pwME
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MEAction UK @meactionuk.bsky.social · 21/09/2026
We have heard that he has received more emails than he can read and has asked for no more.
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MEAction UK @meactionuk.bsky.social · 21/09/2026
George Monbiot has sent out a call asking 'Are any of you still being offered inappropriate (psych/GET etc) "treatments"? Please email george@monbiot.info #pwME #VerySevereME
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MEAction UK @meactionuk.bsky.social · 15/09/2026
Please read this petition update about Karen Gordon and sign if you haven't already. Be aware that Karen is still very ill and having a hard time in hospital, so read with caution. www.change.org/p/save-karen... #VerySevereME
A photograph of Karen Gordon in a dark room in a hospital bed with a monitor by her bedside.
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MEAction UK @meactionuk.bsky.social · 04/09/2026
The video of the entire session is available here www.scottishparliament.tv/meeting/heal... Contributions from the Third Sector organisations begin around 11:11:29 #MyalgicEncephalomyelitis #MyalgicE #ScottishParliament
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MEAction UK @meactionuk.bsky.social · 04/09/2026
You can watch a clip above of #MEAction Scotland trustee, Janet Sylvester, giving her introductory remarks. www.scottishparliament.tv/meeting/heal...
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MEAction UK @meactionuk.bsky.social · 04/09/2026
#MEAction Scotland was part of a group drawn from third sector organisations that included the Health and Social Care Alliance Scotland, the Scottish Association for Mental Health, @longcovidscot.bsky.social and the Chronic Pain Group
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MEAction UK @meactionuk.bsky.social · 04/09/2026
#MEAction Scotland was recently invited to give evidence to the Health, Care and Sport Committee at the Scottish Parliament. The meeting, which took place on September 2nd, 2026, was designed to give the new committee an overview of key issues in the health care sector in Scotland.
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MEAction UK @meactionuk.bsky.social · 11/08/2026
MEAction UK are delighted to welcome our new trustees. Follow the link to learn more. meaction.org.uk/news/2026/08... #pwME #MyalgicEncephalomyelitis
A photograph of hands joining with a red heart shape on the centre. Text; Welcome to our new trustees. MEAction UK is thrilled to welcome new members to our board of trustees.
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MEAction UK @meactionuk.bsky.social · 11/08/2026
The #MEAction Network Severe ME Artists Project has many wonderful pieces of art to share with you. Please share some love with the artists. x.com/MEActNet/sta... #SevereMEWeek2026
x.com
#MEAction Network on X
In honor of #SevereMEday, #MEAction is honored to share the Severe ME Artists Project 2026! Over 100 of you submitted photos, drawings, writing, and videos of your work! We are thrilled to share so many amazing and powerful pieces of artwork. https://t.co/B6w4pMvG7K #SevereME https://t.co/ZSRbXKArBX
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MEAction UK @meactionuk.bsky.social · 05/08/2026
Use our advocacy guides to contact your MP. meaction.org.uk/news/2026/08... #VerySevereME #SevereME #SevereMEWeek2026 #SevereMEAwareness
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MEAction UK @meactionuk.bsky.social · 05/08/2026
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.
Severe ME Awareness Week. Lobby your MP! Text is in front of an image of very severe people with ME projected onto a wall with graffiti with the London Eye in the background,
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MEAction UK @meactionuk.bsky.social · 22/07/2026
questions-statements.parliament.uk/written-ques... #VerySevereME
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MEAction UK @meactionuk.bsky.social · 22/07/2026
𝗵𝗼𝘀𝗽𝗶𝘁𝗮𝗹𝘀 𝗳𝗼𝗿 𝘁𝗿𝗲𝗮𝘁𝗶𝗻𝗴 𝘃𝗲𝗿𝘆 𝘀𝗲𝘃𝗲𝗿𝗲 𝗠𝗘, 𝗳𝘂𝗿𝘁𝗵𝗲𝗿 𝘁𝗼 𝘁𝗵𝗲 𝗣𝗿𝗲𝘃𝗲𝗻𝘁𝗶𝗼𝗻 𝗼𝗳 𝗙𝘂𝘁𝘂𝗿𝗲 𝗗𝗲𝗮𝘁𝗵𝘀 𝗥𝗲𝗽𝗼𝗿𝘁 𝗽𝘂𝗯𝗹𝗶𝘀𝗵𝗲𝗱 𝗼𝗻 𝟴 𝗢𝗰𝘁𝗼𝗯𝗲𝗿 𝟮𝟬𝟮𝟰.
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MEAction UK @meactionuk.bsky.social · 22/07/2026
questions-statements.parliament.uk/written-ques... 𝗧𝗼 𝗮𝘀𝗸 𝘁𝗵𝗲 𝗦𝗲𝗰𝗿𝗲𝘁𝗮𝗿𝘆 𝗼𝗳 𝗦𝘁𝗮𝘁𝗲 𝗳𝗼𝗿 𝗛𝗲𝗮𝗹𝘁𝗵 𝗮𝗻𝗱 𝗦𝗼𝗰𝗶𝗮𝗹 𝗖𝗮𝗿𝗲, 𝘄𝗵𝗮𝘁 𝘀𝘁𝗲𝗽𝘀 𝗵𝗲 𝗶𝘀 𝘁𝗮𝗸𝗶𝗻𝗴 𝘁𝗼 𝗱𝗲𝘃𝗲𝗹𝗼𝗽 𝘀𝗽𝗲𝗰𝗶𝗮𝗹𝗶𝘀𝘁 𝗲𝘅𝗽𝗲𝗿𝘁𝗶𝘀𝗲 𝗶𝗻
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MEAction UK @meactionuk.bsky.social · 22/07/2026
𝘄𝗶𝘁𝗵 𝘃𝗲𝗿𝘆 𝘀𝗲𝘃𝗲𝗿𝗲 𝗠𝗘.
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MEAction UK @meactionuk.bsky.social · 22/07/2026
questions-statements.parliament.uk/written-ques... 𝗧𝗼 𝗮𝘀𝗸 𝘁𝗵𝗲 𝗦𝗲𝗰𝗿𝗲𝘁𝗮𝗿𝘆 𝗼𝗳 𝗦𝘁𝗮𝘁𝗲 𝗳𝗼𝗿 𝗛𝗲𝗮𝗹𝘁𝗵 𝗮𝗻𝗱 𝗦𝗼𝗰𝗶𝗮𝗹 𝗖𝗮𝗿𝗲, 𝘄𝗵𝗮𝘁 𝗿𝗲𝗰𝗲𝗻𝘁 𝘀𝘁𝗲𝗽𝘀 𝗵𝗶𝘀 𝗗𝗲𝗽𝗮𝗿𝘁𝗺𝗲𝗻𝘁 𝗵𝗮𝘀 𝘁𝗮𝗸𝗲𝗻 𝘁𝗼 𝘀𝘂𝗽𝗽𝗼𝗿𝘁 𝘁𝗵𝗼𝘀𝗲
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MEAction UK @meactionuk.bsky.social · 22/07/2026
𝘁𝗵𝗼𝘀𝗲 𝘄𝗶𝘁𝗵 𝘃𝗲𝗿𝘆 𝘀𝗲𝘃𝗲𝗿𝗲 𝗠𝗘.
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MEAction UK @meactionuk.bsky.social · 22/07/2026
𝗧𝗼 𝗮𝘀𝗸 𝘁𝗵𝗲 𝗦𝗲𝗰𝗿𝗲𝘁𝗮𝗿𝘆 𝗼𝗳 𝗦𝘁𝗮𝘁𝗲 𝗳𝗼𝗿 𝗛𝗲𝗮𝗹𝘁𝗵 𝗮𝗻𝗱 𝗦𝗼𝗰𝗶𝗮𝗹 𝗖𝗮𝗿𝗲, 𝗶𝗳 𝗵𝗲 𝘄𝗶𝗹𝗹 𝗺𝗮𝗸𝗲 𝗮𝗻 𝗮𝘀𝘀𝗲𝘀𝘀𝗺𝗲𝗻𝘁 𝗼𝗳 𝘁𝗵𝗲 𝗽𝗼𝘁𝗲𝗻𝘁𝗶𝗮𝗹 𝗺𝗲𝗿𝗶𝘁𝘀 𝗼𝗳 𝗰𝗿𝗲𝗮𝘁𝗶𝗻𝗴 𝗮 𝘀𝗽𝗲𝗰𝗶𝗮𝗹𝗶𝘀𝘁 𝗡𝗛𝗦 𝘀𝗲𝗿𝘃𝗶𝗰𝗲 𝘁𝗼 𝘀𝘂𝗽𝗽𝗼𝗿𝘁
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MEAction UK @meactionuk.bsky.social · 22/07/2026
Disappointing, but we keep on going, we keep campaigning and we will make change happen.
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MEAction UK @meactionuk.bsky.social · 22/07/2026
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.
Lobby Your MP for the #MillionsMissing and the #MEAction UK logo projected onto a wall with Parliament lit up at night in the background.
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MEAction UK @meactionuk.bsky.social · 15/07/2026
#MyalgicEncephalomyelitis #MyalgicE
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MEAction UK @meactionuk.bsky.social · 15/07/2026
meaction.org.uk/media/annual...
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MEAction UK @meactionuk.bsky.social · 15/07/2026
Read the full report here
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MEAction UK @meactionuk.bsky.social · 15/07/2026
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.
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MEAction UK @meactionuk.bsky.social · 14/07/2026
Read the full report here shorturl.at/JRS56 #MyalgicEncephalomyelitis #MyalgicE
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MEAction UK @meactionuk.bsky.social · 02/07/2026
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...
longcovidadvoc.com
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
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MEAction UK @meactionuk.bsky.social · 22/06/2026
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/
Announcement for the Severe ME Artists Project 2026 with a July 24th entry deadline and website details. Background in watercolors using peach, white and minty teal. Text: Severe ME Artists Project 2026 Deadline to enter July 24th Details on our website. #MEAction
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MEAction UK @meactionuk.bsky.social · 21/06/2026
More information about the book and the WIMEL writers' group can be found here wimel2.wordpress.com/ #MyalgicEncephalomyelitis #MEAwareness #WIMEL
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MEAction UK @meactionuk.bsky.social · 21/06/2026
Each chapter consists of a short introduction followed by a selection of essays expanding on the topic from a lived experience perspective. Each full essay is followed by a short summary version covering the main points.
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MEAction UK @meactionuk.bsky.social · 21/06/2026
A collection of educational and informational writing rather than a medical text book, the book is divided into chapters with titles like 'Introducing Myalgic Encephalomyelitis - A Severe Biological Disease' and 'Post-Exertional Malaise, Pain and Physiotherapy'.
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MEAction UK @meactionuk.bsky.social · 21/06/2026
while aiming to advocate and spread accurate, truthful information and awareness about ME, especially to healthcare professionals, students, and policy-makers who may have limited knowledge about the illness.
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MEAction UK @meactionuk.bsky.social · 21/06/2026
The What Is Myalgic Encephalomyelitis Like? (WIMEL) writers are an international group of people living with ME and related illnesses who come together to write. Their focus is answering the question, What is it like to live with ME?
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MEAction UK @meactionuk.bsky.social · 21/06/2026
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
Blue, white and gold abstract art overlaid by three navy blue boxes containing white text. The text in the top box reads 'What is Myalgic Encephalomyelitis Like? Patient and Caregiver Perspectives'. Text in the second box reads 'Created by WIMEL writers. Foreward and Other Contributions by Bateman Horne Center.' Text in the third (bottom) box reads 'For medical professionals, policy-makers and all affected by myalgic encephalomyelitis' The WIMEL writers logo - an empty battery symbol, resting on a pillow - follows this text.
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MEAction UK @meactionuk.bsky.social · 20/06/2026
Read more: shorturl.at/I7Rwk. #MEActionUK #MyalgicEncephalomyelitis #VerySevereME #MECFS #Makerfield #AndyBurnham
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MEAction UK @meactionuk.bsky.social · 20/06/2026
If you're from Makerfield, Wigan, Ashton-in-Makerfield, Leigh or Greater Manchester: 🔁 Please reshare 💬 Tag @AndyBurnhamGM 📧 Contact his office 💙Tell him why people with severe ME deserve NHS care Together we can help make sure some of the sickest people in the country are no longer invisible.
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MEAction UK @meactionuk.bsky.social · 20/06/2026
The very severely ill with ME can’t make a noise themselves so we ask you to be their voice!
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MEAction UK @meactionuk.bsky.social · 20/06/2026
Eight years later there is still no treatment or service for the very sickest people with ME who are still neglected, stigmatised and abandoned. Today we're asking him to champion a specialist NHS service for the thousands of people living with very severe ME who have no treatment or care.
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MEAction UK @meactionuk.bsky.social · 20/06/2026
In 2018 Andy Burnham visited our #MillionsMissing rally in St Peter's Square, Manchester, and spoke with campaigners fighting for treatment for people with Myalgic Encephalomyelitis (ME).
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MEAction UK @meactionuk.bsky.social · 20/06/2026
@andyburnham.bsky.social always speaks about fairness and standing up for people who are overlooked.
Andy Burnham, Mayor of Greater Manchester, stands next to an #MEAction UK campaigner who wears a red t-shirt at Manchester #MillionsMissing in 2018.Shoes laid out in St Peters Square Manchester for #MillionsMissing in 2018.Ali, severely ill with ME lies in a hospital bed with a tube coming out of her hand and wearing an eye mask and headphones.
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MEAction UK @meactionuk.bsky.social · 19/06/2026
#MyalgicEncephalomyelitis #VerySevereME www.bbc.co.uk/iplayer/epis...
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MEAction UK @meactionuk.bsky.social · 19/06/2026
people with ME. We were disappointed by the government’s response given by Baroness Merron, The Parliamentary Under-Secretary for Health and Social Care who offered nothing new for the very severely ill who have no NHS service.
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MEAction UK @meactionuk.bsky.social · 19/06/2026
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
bbc.co.uk
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.
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MEAction UK @meactionuk.bsky.social · 18/06/2026
Our thanks to Baroness Scott of Needham Market for securing this debate and for her long term support of people with ME. Watch on Parliament Live TV: shorturl.at/otoGY Or on the BBC: shorturl.at/pZMjJ #SevereME #MyalgicEncephalomyelitis #VerySevereME
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MEAction UK @meactionuk.bsky.social · 18/06/2026
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.
shorturl.at
Parliamentlive.tv
House of Lords
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MEAction UK @meactionuk.bsky.social · 17/06/2026
If you get an encouraging reply please email admin@meaction.org.uk. Thank you. #MyalgicEncephalomyelitis #VerySevereME
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MEAction UK @meactionuk.bsky.social · 17/06/2026
Could your family and friends join you in tagging, messaging and sharing our call? Use our templates to send a message, we have one requesting a meeting and a short one for people who can't meet in person. Links to template and video are here: shorturl.at/I7Rwk.
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MEAction UK @meactionuk.bsky.social · 17/06/2026
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?
A photograph of young white woman lying in bed with short brown hair and with a feeding tube is projected on the side of Blackfriars station at night with London in the background.THEY ARE DESPERATE in white text on a red background is projected on the side of Blackfriars station at night with London in the background.A photograph of James Murray and the words in white on a red background - James Murray Secretary of State for Health is projected on the side of Blackfriars station at night with London in the background.
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MEAction UK @meactionuk.bsky.social · 15/06/2026
#MyalgicEncephalomyelitis #VerySevereME
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