Action for ME
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actionforme.bsky.social
Action for ME
@actionforme.bsky.social
520 followers 12 following 500 posts
Providing support & holistic healthcare services to people of all ages affected by #MECFS. Charity number: 1036419 / SC040452
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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
actionforme.bsky.social
📢 Welsh Senedd passes Motion 8884!🧡

Pleased to see the Senedd vote in favour of Adam Price MS motion, bringing vital attention to severe & very severe ME and the urgent need for drastically better care, support & research.

#pwME #Senedd
Members of Severe ME Difrifol Cymru pose indoors with Adam Price MS, holding ME awareness signs and photos. Behind them is a Severe ME Difrifol Cymru banner. The group looks supportive and gathered for the Senedd Motion 8884 debate.
December 12, 2025 at 1:16 PM
actionforme.bsky.social
Recording from the LOCOME Project webinar now available!

The webinar took place on Dec 5 & shared the projects final findings & discussed the next steps.

Learn more about these findings, alongside discussions from the panel by watching the recording on our YouTube channel 👇

youtu.be/ITZ3LzZ0NAA
Graphic from Action for ME promoting the LOCOME Research Project webinar recording that is now available to watch on Action for ME’s YouTube channel. Top half is a photo of a gene. Action for ME logo in top right corner.
December 12, 2025 at 10:45 AM
actionforme.bsky.social
We are delighted to announce the first online workshop of the PRIME research project!
 
📆 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... 
December 11, 2025 at 1:00 PM
actionforme.bsky.social
🥳 We are absolutely blown away by your support during our Big Give week. From all of us at Action for ME, thank you for helping us surpass our Christmas campaign target, and raise an online total of £185,877.

✨ The Big Give campaign is now finished, and we’ll be sharing our full total soon.
Graphic from Action for ME's Big Give Campaign titled 'Our Big Give 2025 is finished! Our final total is...'. Action for ME logo in bottom left corner and Big Give logo in top right corner. Graphic from Action for ME's Big Give Christmas Challenge with the final online total amount of £185,877 from 690 donations in one week. Text in bottom half includes a thank you from Action for ME. Graphic from Action for ME's Big Give Christmas Challenge. Title 'Your donations mean we can' with text beneath describing what the Big Give donations mean for Action for ME supporting people with ME, including providing support and care, raising awareness of the impact of ME and investing in research. Graphic from Action for ME's Big Give Christmas Challenge. Title 'You've also helped us raise vital awareness of ME' with text beneath describing social media stats during the campaign, including over 1,500 shares, 40,000 views and over 100,000 people reached.
December 9, 2025 at 2:33 PM
actionforme.bsky.social
Last year, our free Information & Support service received over 1,700 enquiries from people with ME.

This vital service exists because of the generosity of our community.

Donate today & help us continue to provide tailored advice & practical resources to people like Nic 👇

bit.ly/2025-big-give

 
Graphic for Action for ME’s Big Give Christmas Challenge featuring Nic’s story. Quote in centre from Nic about how Action for ME understood her ME and the support they provided from the Information and Support Service. Big Give logo in top right corner.
December 9, 2025 at 10:00 AM
actionforme.bsky.social
⏰ 24 hours left! Together, you’ve helped raise over £135,000 to improve the lives of people with ME and accelerate vital research.

Although our match funds have now run out, every single donation still counts.

✨ Donate here: bit.ly/2025-big-give 

Thank you so much 🧡
December 8, 2025 at 11:50 AM
actionforme.bsky.social
Jo’s poem is a reminder of the hope that research brings - and why we need to keep pushing forward.
 
There's still two days left of our Big Give campaign. Your donations will help us build on DecodeME's findings and bring hope for the future.
 
🧡 Donate here: bit.ly/2025-big-give 

 
December 7, 2025 at 2:00 PM
actionforme.bsky.social
Donations made during our last Big Give campaign enabled us to provide over 120 bursaries to people like Nic, who has accessed our Chaplaincy support service.

✨ Donate today and help us continue to support the spiritual, emotional and physical needs to people with ME.

bit.ly/2025-big-give
Graphic for Action for ME’s Big Give Christmas Challenge. Features a quote from Nic who has accessed the Chaplaincy support service. Quote is in the centre and talks about how the chaplaincy service is a safe and kind service. Action for ME logo in bottom right corner and Big Give logo in top left. Graphic for Action for ME’s Big Give Christmas Challenge. Features a quote from Nic who has accessed the Chaplaincy support service. The quote talks about how invaluable the service has been and how they have helped find the joy in little things. Big Give logo in top right corner. 
December 7, 2025 at 10:00 AM
actionforme.bsky.social
“The advice and support I was given once again lifted me out of a state of desperation and I don’t say that lightly.” 

Donate to our Big Give campaign today, and help us continue to help people like Beena access the support they need: bit.ly/2025-big-give 
December 6, 2025 at 12:00 PM
actionforme.bsky.social
Thank you for all the support to our Big Give #ChristmasChallenge – so far we have raised over £118,000!⭐

We are so grateful for your support and incredible generosity – every donation means a lot to us and will enable us to continue to support people affected by ME of all ages.
December 5, 2025 at 5:26 PM
actionforme.bsky.social
Stanley* is a Patient & Public Involvement(PPI) contributor to Action for ME research projects, including LOCOME and our Big Survey.

By donating to our Big Give, you can help us drive groundbreaking research forward: bit.ly/2025-big-give 

*Name has been changed.
 
December 5, 2025 at 4:00 PM
actionforme.bsky.social
🔎 From #DecodeME to LOCOME, it's been a landmark year for ME research.

Hear why this is a pivotal moment for #MECFS research - and how Action for ME is accelerating understanding for everyone affected.

🧬 Donate today and your gift will be DOUBLED: bit.ly/2025-big-give

#ChristmasChallenge
December 5, 2025 at 12:45 PM
Reposted by Action for ME
precisionlife.bsky.social
WEBINAR TODAY:
Our researchers are unpacking the new ME genetics study today - join the live webinar to hear the findings first-hand and get your questions answered.

📅 Today
🕑 2PM GMT
🔗 Register: us02web.zoom.us/webinar/regi...

#pwME #MECFS #longCOVID #MissingMillions
December 5, 2025 at 10:58 AM
Reposted by Action for ME
mecfssd.bsky.social
Congratulations to Kieran Gharti, winner of the @actionforme.bsky.social 2025 Medical Student Essay Competition! Kieran, a third-year MBChB Medicine student at @UoMMedicine, highlighted the urgent need for more research into ME/CFS in his winning essay.
A photo of Kieran Gharti, a third-year MBChB Medicine student at the University of Manchester, standing in a casual setting with a bookshelf in the background. Kieran is wearing a grey medical scrub and smiling at the camera. The image includes graphics and text that read "The winner of our Medical Student Essay Competition is… Kieran Gharti!" and information about his current studies. The bottom of the image features the slogan “Improving lives and accelerating understanding” with the Action for M.E. logo.
December 5, 2025 at 7:40 AM
actionforme.bsky.social
Money raised during last year’s Big Give helped us provide 121 bursaries for healthcare to people like Lulu, enabling them to access ME-informed health and wellbeing support. 
 
✨You can donate to our Big Give campaign today, and have your donation doubled! bit.ly/2025-big-give 
December 4, 2025 at 2:00 PM
Reposted by Action for ME
cgatist.bsky.social
Delighted how @precisionlife.bsky.social and @actionforme.bsky.social et al used consented @decodemestudy.bsky.social data to
-replicate #MEcfs genetic signal &
-show its shared/distinct genetics with Long Covid.
Next: replicate ME/CFS subtypes w/ targeted therapies
www.medrxiv.org/content/10.6...
Identification of Novel Reproducible Combinatorial Genetic Risk Factors for Myalgic Encephalomyelitis in the DecodeME Patient Cohort and Commonalities with Long COVID
Background: Myalgic encephalomyelitis (also known as ME/CFS or simply ME) has severely impacted the lives of tens of millions of people globally, but the disease currently has no accurate diagnostic t...
www.medrxiv.org
December 4, 2025 at 8:13 AM