“I look forward to working with Action for ME and colleagues across Parliament to help ensure that its commitments are delivered fully and in a timely manner.”
Thanks to Greg for his commitment to the ME community and for already tabling written questions on severe and very severe ME 🙏
#MyalgicE
“to ensure the UK keeps pace with developments internationally.
The Delivery Plan published last year represents a step forward, but its impact will depend on effective implementation...
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“However, at a time when biomedical and genetic research is opening up new avenues of understanding, it is important that the UK actively contributes and maintains ambition in this field.
Building research capacity and encouraging collaboration across institutions will be essential...
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“I am pleased to become a Parliamentary Champion for Action for ME and to support efforts to strengthen the UK’s response to this complex and often misunderstood illness.
The UK has a strong reputation for medical research and innovation...
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#MyalgicEncephalomyelitis
Portrait of a suited man against a grey background. A graphic reads “Policy news” and “Greg Stafford MP joins Action for ME’s Parliamentary Champions network & APPG.” The Action for ME logo appears in the top right.
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We’re pleased to welcome Greg Stafford MP as our newest Parliamentary Champion and member of the APPG on ME 🤝
Following our meeting, and speaking on the announcement, Greg said:
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#pwME #MECFS
Looking forward to working towards positive change for the ME community with @sharonhodgsonmp.bsky.social, in her new Ministerial role 🤝
"Those with ME have experienced years of being treated unjustly. Sometimes, it feels endless and irreversible. But remember this: getting things done in parliament starts with having MPs on your side." Tessa Munt MP. New #ThereForME Substack post.
We're delighted to share today's #ThereForME blog from friend of the campaign @tessamunt.bsky.social.
In her blog, Tessa lays out the case for change and how to get involved.
Link in next post 👇
Graphic promoting the Forward ME Annual General Meeting and Guest Lecture, taking place on Thursday 5th March via Zoom. The AGM starts at 2:15pm GMT and the Guest Lecture at 3pm GMT.
📣 ForwardME’s Annual General Meeting will take place on Thursday 5th March at 2:15pm (GMT), followed by a guest lecture at 3pm. The event will be held online via Zoom.
🔗 Register here: us06web.zoom.us/meeting/regi...
Graphic from Action for ME promoting the next free online Mindfulness workshop for adult with ME & carers. This takes place on Friday 27 March 2026 at 12.30pm. Top half of graphic features a photo of several daffodils in bloom. Action for ME logo in top left corner.
Join our free online Mindfulness session for adults with ME & carers.
📆 Fri 27 Mar 12.30pm, via Zoom
The session is designed for people with ME & is led by volunteer Alice, a qualified mindfulness meditation teacher, & supported by a staff member.
To attend email avril.mclean@actionforme.org.uk
Graphic from Action for ME promoting the ME Friends Online Forum, open to adults in the UK living with ME. Photo in bottom half shows a person using a mobile phone with a QR code to the forum sign up page in right corner. Text in top half details the forums support. Action for ME logo in top right.
💻 Join our ME Friends Online forum & connect with others who truly understand.
Our friendly forum is open to users aged 18 & over from the UK. There’s a range of topics being discussed, including a section for games!
Sign up & read the Terms of Use 👇
www.actionforme.org.uk/sign-up/
Photo in top half of graphic of a forest floor with snowdrops. In bottom half is text in blue on a white background: ‘February online Mindfulness session recording now available! Watch now on our YouTube channel!’. Action for ME logo in top left corner with QR code in bottom right corner.
The recording from our online Mindfulness session from 17 Feb is now available to watch on our YouTube channel!
The session was specifically designed for people with ME & was led by Action for ME volunteer Alice.
Watch the recording here 👇
www.youtube.com/watch?v=96oJ...
Hear from DecodeME participants, who share what the study's results mean to them and also from Sir Stephen Holgate, Professor Rosemary Boyton on the Rosetta Stone study @meassociation.org.uk , and people with lived experience of ME.
Listen on BBC Sounds: www.bbc.co.uk/sounds/play/...
Image shows Radio 4's Inside Health programme logo along with text: 'Prof Chris Ponting discusses DecodeME on BBC Radio 4's Inside Health'
🎙️ Hear Prof Chris Ponting on BBC Radio 4's Inside Health programme
Recording now available from this morning's broadcast, where Chris shares how DecodeME has shaped ME research, providing a foundation for future studies to dig deeper into the genetic findings, and further explore the genome.
Graphic from Action for ME promoting their Family Support Service. Top half includes a photo of a mother and young daughter sat talking. Bottom half includes a quote from a Family Support service user details how helpful the service is.
Graphic from Action for ME promoting their Family Support service. Text includes details of the two support options: accessing education in a needs-appropriate way and working with professionals. Text ‘we are here for parents or carers of children & young people with ME’ along bottom.
Our Family Support service is here for parents or carers of children with diagnosed or suspected ME.
We support families to access education & work with professionals, such as their child’s GP.
For more info👇
www.actionforme.org.uk/supporting-y...
Image of a lab scientist, with ME/CFS Alliance logo on top right corner. Text reads 'Research Event. The ME/CFS Alliance in collaboration with Professor Sir Stephen Holgate is spearheading a symposium
Graphic shows a ME/CFS Alliance poster advertising the symposium.
To mark their 20th anniversary, the ME/CFS Alliance are hosting a symposium focused on the future of ME and long Covid research.
To find out more and get tickets, get in touch with the ME/CFS Alliance by email: info@mecfsalliance.org.uk
You can find out more on their website: mecfsalliance.org.uk
This includes building strategic partnerships and securing further funding.
Reaching this stage marks an important step forward, enabling scientific research at the scale people with ME and Long Covid need, giving hope for change.
🔗 Read more: www.actionforme.org.uk/research-cam...
We’re grateful to our partners, the @schmidtinitiative.bsky.social and the Complex Disorders Alliance (CODA), whose early funding has helped kickstart phase one.
With 9000 samples already in place through DecodeME, our focus now turns to putting all the foundations in place for the study.
Image of a DNA double helix against a soft blue background with light particles. The Action for ME logo appears in the top right corner. Text on the image reads: “Research News – SequenceME and Long Covid study launches. The world’s largest long-read, whole-genome study of any disease.”
Quote from Action for ME CEO Sonya Chowdhury.
Quote from Complex Disorders Alliance CEO Amy Rochlin.
Quote from Schmidt Iniative for Long Covid CEO Dr John Redd
Today we’re delighted to launch Sequence ME & Long Covid - the world’s largest long-read, whole-genome study of any disease 🔬
🧬 This £20 million ground breaking initiative will explore the root causes of ME and Long Covid, with the aim of accelerating progress towards diagnostics and treatments.
Smiling runner holding up her finisher’s medal, surrounded by other runners, with text overlay: “Take part in the Great North Run in aid of Action for ME – 1 week left to apply!” and the Action for ME logo.
One week left to apply to take part in the Great North Run for Action for ME!
Taking place on 13th September, the Great North Run is an epic half marathon with around 60,000 participants.
Find out more on our website: www.actionforme.org.uk/great-north-...
Policy News: Tom Morrison MP joins our Parliamentary Champions network and APPG on ME. Image of Tom and Action for ME logo.
Quote from Tom Morrison MP.
We're delighted to welcome @tommorrisonmp.bsky.social to our Parliamentary Champions network! Tom will also be joining the APPG on ME.
We would like to thank Tom for his dedication to supporting people with ME and we look forward to working with him.
Read more www.actionforme.org.uk/campaign/par...
Please send any additional info to policy@actionforme.org.uk
Thank you :)
Hi @lucibee.bsky.social - thank you for sharing this and for taking the time and energy to submit the FOIs. Are you happy for us to formally pass this on to the APPG on ME to be used/referenced in their work? Best, Josh
Thanks to The Times for highlighting Savannah’s story and the critical issue that there is no specialist NHS service for very severe ME. Grateful to Ashley Dalton for our recent brief call but still waiting for progress report re ME Plan commitment to explore such a service, including treatments.
Graphic promoting Children’s Mental Health Week by Action for ME. Text in top half details how Action for ME support young people with ME through their Young People’s Counselling and Community Service. Photo in bottom half shows a young person on their phone with Children's Mental Health Week logo.
This week is #ChildrensMentalHealthWeek with Place2Be.
1 in 5 children face mental health challenges.
We support children & young people with ME with our FREE Young People’s Counselling & Young People’s Community. More info 👇
www.actionforme.org.uk/18-and-under...
Graphic promoting Children’s Mental Health Week by Action for ME. Text in top half details how Action for ME support young people with ME through their Young People’s Counselling and Community Service. Photo in bottom half shows a young person using a laptop with Children's Mental Heath Week logo.
This week we’re supporting #ChildrensMentalHealthWeek with Place2Be.
We’re here to support children & young people with ME through our FREE Young People’s Counselling & Young People’s Community. More info 👇
www.actionforme.org.uk/18-and-under...
Photo of representatives from the Overlapping Illness Alliance at their recent in person meeting.
Partners across the Overlapping Illness Alliance (OIA) recently came together in person to reflect on our shared priorities, review recent advocacy activity and agree next steps for our collaborative work.
We'll share more as it develops! Learn about the OIA: www.overlappingillnessalliance.org.uk
Graphic promoting Children’s Mental Health Week by Action for ME. Text in top half details how Action for ME support young people with ME through their Young People’s Counselling and Community Service. Photo in bottom half of a child smiling with Children's Mental Health Week logo in bottom left.
This week is #ChildrensMentalHealthWeek with Place2Be.
We’re here to support children & young people with ME through our FREE Young People’s Counselling & Young People’s Community. More info 👇
www.actionforme.org.uk/18-and-under...
1/3 Now published: We performed a large-scale replication testing the effect of serum from 67 pwME and 53 healthy donors on muscle cell mitochondria, revealing no significant differences. This suggests earlier results may not be true for people with ME in general. doi.org/10.1371/jour...
Action for ME graphic celebrating 5,113 people taking part in the Big Survey, with a thank-you message and heart illustration.
Thank you so much to over 5,000 of you who took part in our Big Survey! 🙌
We're so grateful for the time and energy you gave us in sharing your experiences, and providing insight into life with ME 🧡
📣The recording from the PRIME webinar is now available!
Our apologies, due to a technical error, the captions file wasn't saved and we don't have capacity to generate them ourselves given the webinar's length.
🔗 Watch the recording on our YouTube: www.youtube.com/watch?v=1sVb...
