Action for ME
LightNews LightNews
actionforme.bsky.social
Action for ME
@actionforme.bsky.social
560 followers 12 following 530 posts
Providing support & holistic healthcare services to people of all ages affected by #MECFS. Charity number: 1036419 / SC040452
Posts Replies Media Videos
actionforme.bsky.social
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...
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.
February 10, 2026 at 2:00 PM
Reposted by Action for ME
aryback.bsky.social
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...
Indistinguishable mitochondrial phenotypes after exposure of healthy myoblasts to myalgic encephalomyelitis/chronic fatigue syndrome or control serum
Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome is a disease of uncertain aetiology that affects up to 400,000 individuals in the UK. Exposure of cultured cells to the sera of people with ME...
doi.org
February 4, 2026 at 10:21 AM
actionforme.bsky.social
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 🧡
Action for ME graphic celebrating 5,113 people taking part in the Big Survey, with a thank-you message and heart illustration.
February 2, 2026 at 4:00 PM
actionforme.bsky.social
📣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...
January 30, 2026 at 3:00 PM
actionforme.bsky.social
We're delighted to welcome Lee Barron MP to our Parliamentary Champions network! 🤝
We would like to thank Lee for his dedication to supporting people with ME and we look forward to working with him.
Read more about our Parliamentary Champions network: www.actionforme.org.uk/campaign/par...
January 30, 2026 at 1:00 PM
actionforme.bsky.social
1/4

📢 APPG on ME announcement

As many of you will already be aware, @tessamunt.bsky.social MP has officially been appointed Chair of the APPG on ME, following the group’s Annual General Meeting last week 🤝

#APPG #MyalgicEncephalomyelitis

⬇️
Panoramic image of the Houses of Parliament and Big Ben under a blue sky. Logos for Action for ME, the ME Association and the APPG on Myalgic Encephalomyelitis appear at the top. Text reads: “APPG on ME update: Annual General Meeting and 2026 schedule”. The Chair, officers, and members of the APPG on ME stand alongside representatives from the joint-Secretariat, at the group's 2026 AGM.
January 30, 2026 at 11:00 AM
actionforme.bsky.social
💻 Join our ME Friends Online forum!

Open to adults in the UK living with ME, our forum offers peer support, friendly discussions & an opportunity to connect with others who truly understand.

Sign up & read the Terms of Use here 👇

www.actionforme.org.uk/sign-up/
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 man using a tablet, 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 corner. 
January 27, 2026 at 12:00 PM
actionforme.bsky.social
⌛ The Big Survey closes tomorrow!

Your responses directly shape our work and help us to illustrate the impact of ME. If you're thinking about taking part, please do.

🔗 Take part today: www.actionforme.org.uk/research-cam...
January 26, 2026 at 3:06 PM
actionforme.bsky.social
Up to 1.35 million people in the UK are living with ME or ME-like symptoms.

1 in 4 are so severely affected that they are house or bedbound.

Many people living with ME face serious stigma and isolation.

Swipe through the images to learn more about ME and help change this.
Graphic from Action for ME. Photo of a bed with blankets. Text in orange in bottom half: ‘What is Myalgic Encephalomyelitis (ME)?’. Action for ME mission text along bottom with Action for ME logo in bottom right corner. Graphic from Action for ME. Text details what ME is and includes statistics for the number of people living with ME and the number with Severe ME. Action for ME logo along bottom with Action for ME logo in bottom right corner. Graphic from Action for ME. Text details ME symptoms with icons next to each one. Action for ME mission along bottom with Action for ME logo in bottom right corner. Graphic from Action for ME. Text details what causes ME with icons next to each one. Action for ME mission along bottom with Action for ME logo in bottom right corner.
January 21, 2026 at 11:02 AM
actionforme.bsky.social
🚨 One week left to contribute to ME research and fill in our 2025/26 Big Survey!

If you've got ME or ME-like symptoms as part of long Covid, we want to hear from you 🙏

🔗 Take part, and find out more: www.actionforme.org.uk/research-cam...

Thank you!
January 20, 2026 at 3:49 PM
actionforme.bsky.social
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...
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.
January 20, 2026 at 2:00 PM
actionforme.bsky.social
📢 New self‑advocacy resource now available: Impact Statement Template.

Developed with our Adults Advocacy Service, it helps people with ME communicate how ME affects them and what support they need.

Download here 👇

www.actionforme.org.uk/resource/imp...
Graphic promoting an Action for ME self‑advocacy resource titled “Impact Statement Template”. The image highlights how the template helps people with ME explain how the condition affects them and what adjustments would support them. Action for ME logo in top right.
January 16, 2026 at 1:00 PM
actionforme.bsky.social
The Department for Transport is consulting on updates to regulations for powered mobility devices like electric wheelchairs & scooters.

Share your views by Mar 31, 2026.

Have your say here 👇

www.gov.uk/government/c...
Graphic from Action for ME sharing the Department for Transport consultation on powered mobility devices. Text highlights deadline of March 31, 2026, and includes QR code to gov.uk for more details. Photo in top half shows someone using a laptop. Action for ME logo in top right corner.
January 16, 2026 at 11:00 AM
actionforme.bsky.social
There's still time to sign up for our first PRIME research project online workshop!

📆 Wed 21 Jan 2026 2pm-5pm.

PRIME is an initiative designed to strengthen & accelerate research into ME/CFS.

Read the full event programme & register for the event 👇

www.actionforme.org.uk/prime-resear...
Graphic promoting the PRIME Research Project online workshop, with text about quantitative research in ME and Long Covid, lab imagery, and event details: Wednesday 21 January 2026, 2–5pm, with Action for ME and the Institute of Genetics & Cancer logos.
January 8, 2026 at 11:00 AM
actionforme.bsky.social
📢 Action for ME CEO, Sonya Chowdhury, speaks to LBC.

You can read the full article here 👇

www.lbc.co.uk/article/trea...
Graphic from Action for ME promoting Sonya Chowdhury’s article for LBC news about ME research. Includes photo of Sonya in the top half & text about Sonya's article. QR code which links to article in bottom right corner. Action for ME logo & LBC logo in top left & right corner respectively.
January 7, 2026 at 1:47 PM
actionforme.bsky.social
📢 Have your say in the conversation about the SEND reform!

Ahead of the publication of the Schools White Paper this year, the Dept for Education is hosting a series of SEND engagement events across the country.

These events are for parents & carers, alongside teachers & other education experts.
Graphic from Action for ME promoting the Department for Education's SEND engagement events. Text in top half: 'Have your say in the conversation about the SEND reform through a series of online and in-person events' Photo in bottom half of school children. Action for ME logo in top right corner.
January 6, 2026 at 10:27 AM
actionforme.bsky.social
✨ Thank you for being part of our 2025 ✨

This year, thousands of people engaged with our content about the reality of ME - from lived experience stories to the DecodeME results and vital policy work.

Thank you for supporting us and helping make ME visible 🧡
December 18, 2025 at 3:00 PM
actionforme.bsky.social
⭐ We’re excited to share the runners-up to our Medical Student Essay Competition!

In fourth place is Mohammed, who is studying at the Uni of Leeds!

Read Eesa’s brilliant essay here👇
www.actionforme.org.uk/supporting-y...

Huge thank you to all the students who took part!
Graphic from Action for ME promoting the fourth place winner of their Medical Student Essay Competition, which is Mohammed Junaid, who studies at the University of Leeds. There is a quote from Dr Nina Muirhead, who was on the essay judging panel, describing the essays received.
December 18, 2025 at 10:00 AM
actionforme.bsky.social
⭐ We’re excited to share the runners-up to our Medical Student Essay Competition!

In third place is Eesa, who is studying at Queen Mary Uni of London!

Read Eesa’s brilliant essay here👇

www.actionforme.org.uk/supporting-y...

Huge thank you to all the students who took part!
Graphic from Action for ME promoting the third place winner of their Medical Student Essay Competition, Eesa Farooqui, who studies at Queen Mary's University of London. Photo of Eesa on right hand side with quote from Eesa on left, detailing his experience of writing his essay.
December 17, 2025 at 4:00 PM
actionforme.bsky.social
⭐ We’re excited to share the runners-up to our Medical Student Essay Competition!

In second place is Elinor, who is studying at the Uni of Leicester!

Read Elinor’s brilliant essay here👇

www.actionforme.org.uk/supporting-y...

Huge thank you to all the students who took part!
Photo from Action for ME promoting the second place winner in their Medical Student Essay Competition, which was Elinor Boese. Elinor is studying at the University of Leicester. A photo of her is on the right had side with a quote from the left, detailing her experience writing the essay.
December 17, 2025 at 2:00 PM
actionforme.bsky.social
We will be closed from 4pm Fri 19 Dec – 9am Mon 5 Jan.

Our Info & Support service reopens to new enquiries at midday Tues 6 Jan.

We know the festive period can be challenging for many people with ME. There are helplines available over Christmas (pictured).

We wish you a wonderful festive break 🧡
Festive Graphic from Action for ME advising of their Christmas closure from 4pm Friday 19 December until 9am Monday 5 January. Graphic from Action for ME with details of 4 support helplines available over the Christmas period - Campaign Against Living Miserably (CALM) 0800 58 58 58, The Silver Line (0800 470 8090), Shout (text SHOUT to 85258) and Samaritans (call 116 223 or email jo@samaritans.org).
December 17, 2025 at 11:00 AM
actionforme.bsky.social
🫶 If you’re 11–18 and living with ME, you don’t have to face it alone.

Our Young People’s Counselling service offers up to 12 online sessions for free, with trained counsellors who understand ME and the impact it can have.

⁠Get in touch through our website: www.actionforme.org.uk/18-and-under...
December 16, 2025 at 1:22 PM
actionforme.bsky.social
Our Information & Support team will be taking a break over Christmas.
 
They'll be closed from 3pm Tues 16 Dec to midday Tues 6 Jan.
 
If you require support over the festive period, you can visit our website or contact the other helplines detailed in the image.
 
We wish you a restful Christmas 🧡
Graphic from Action for ME advising that the Information & Support service team will be taking a break over the Christmas period, from 3pm Tuesday 16 December to midday Tuesday 6 January. Text also advises that there are other helplines available over this period, shared in second image. Graphic from Action for ME with details of 4 support helplines available over the Christmas period - Campaign Against Living Miserably (CALM), Silver Line, Shout and Samaritans.
December 15, 2025 at 12:00 PM
actionforme.bsky.social
We’re delighted to welcome @llinosmedi.bsky.social to our Parliamentary Champions network! 🤝

Llinos met with us recently to discuss how she can further support the ME community, having experienced the devastating impact of #MECFS through her constituency work and APPG on ME.

⬇️

#MyalgicE
Portrait of Llinos Medi MP wearing a green blazer, smiling against a grey background. Text reads: “Policy news: Llinos Medi joins our Parliamentary Champions network.” Action for ME logo shown. Action for ME branded graphic featuring a quote from Llinos Medi MP about supporting people with ME in Wales, improving NICE guideline implementation, scrutinising policy, and driving change. Plaid Cymru MP for Ynys Môn.
December 15, 2025 at 11:06 AM
actionforme.bsky.social
This #FundraisingFriday we want to wish good luck to our fabulous fundraisers & all other participants taking part in the Victoria Park Half Marathon this Saturday!

Want to help us change the lives of people with ME? Fundraise for us! 👇

www.actionforme.org.uk/support-us/f...
Graphic from Action for ME. Photo of Action for ME fundraiser in Action for ME’s branded running vest. Text at top: ‘Wishing the best of luck to our fundraisers taking part in the Victoria Park Half Marathon tomorrow!’. Text on bottom: Fundraise for us & help change lives. 
December 12, 2025 at 3:00 PM