Action for ME
@actionforme.bsky.social
Providing support & holistic healthcare services to people of all ages affected by #MECFS
Charity number: 1036419 / SC040452
Charity number: 1036419 / SC040452
(1/2) 🎥 Conference presentation now available on YouTube!
🧬 This week we shared our work on Patient and Public Involvement within DecodeME at The International Conference on Clinical and Scientific Advances on ME and long Covid, held in Porto, Portugal.
🧬 This week we shared our work on Patient and Public Involvement within DecodeME at The International Conference on Clinical and Scientific Advances on ME and long Covid, held in Porto, Portugal.
November 14, 2025 at 3:15 PM
(1/2) 🎥 Conference presentation now available on YouTube!
🧬 This week we shared our work on Patient and Public Involvement within DecodeME at The International Conference on Clinical and Scientific Advances on ME and long Covid, held in Porto, Portugal.
🧬 This week we shared our work on Patient and Public Involvement within DecodeME at The International Conference on Clinical and Scientific Advances on ME and long Covid, held in Porto, Portugal.
(1/2) 📢 Westminster Hall debate on government support for ME
Tessa Munt MP has tabled a debate on government support for people with ME next week in Westminster. This is an important opportunity to make sure the voices of people with ME are heard in Parliament.
Tessa Munt MP has tabled a debate on government support for people with ME next week in Westminster. This is an important opportunity to make sure the voices of people with ME are heard in Parliament.
November 14, 2025 at 9:51 AM
(1/2) 📢 Westminster Hall debate on government support for ME
Tessa Munt MP has tabled a debate on government support for people with ME next week in Westminster. This is an important opportunity to make sure the voices of people with ME are heard in Parliament.
Tessa Munt MP has tabled a debate on government support for people with ME next week in Westminster. This is an important opportunity to make sure the voices of people with ME are heard in Parliament.
🔍There's still time to take part in our Big Survey! 📊
This year we're aiming for our biggest response yet - so we'd love to hear from you if you've yet to take part. Your responses will shape our work going forwards, contribute to ME research and shine a light on the impact of ME on your life.
This year we're aiming for our biggest response yet - so we'd love to hear from you if you've yet to take part. Your responses will shape our work going forwards, contribute to ME research and shine a light on the impact of ME on your life.
November 13, 2025 at 9:37 AM
🔍There's still time to take part in our Big Survey! 📊
This year we're aiming for our biggest response yet - so we'd love to hear from you if you've yet to take part. Your responses will shape our work going forwards, contribute to ME research and shine a light on the impact of ME on your life.
This year we're aiming for our biggest response yet - so we'd love to hear from you if you've yet to take part. Your responses will shape our work going forwards, contribute to ME research and shine a light on the impact of ME on your life.
Would you like to send or receive a card from another person with ME this Christmas? 🎄
Or do you know someone severely affected by ME who would appreciate a card?
Join our Christmas Angels project! 😇
Or do you know someone severely affected by ME who would appreciate a card?
Join our Christmas Angels project! 😇
November 10, 2025 at 2:05 PM
Would you like to send or receive a card from another person with ME this Christmas? 🎄
Or do you know someone severely affected by ME who would appreciate a card?
Join our Christmas Angels project! 😇
Or do you know someone severely affected by ME who would appreciate a card?
Join our Christmas Angels project! 😇
📢 The International Conference on Clinical and Scientific Advances on ME and Long Covid is taking place in Porto, Portugal next week and you can register to attend online for free!
November 10, 2025 at 11:10 AM
📢 The International Conference on Clinical and Scientific Advances on ME and Long Covid is taking place in Porto, Portugal next week and you can register to attend online for free!
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More than 145 students have entered our Medical Student Essay Competition!
Thank you to all who took the time and energy to submit an essay on the topic of “What’s your most important learning point about ME?”
One entrant said:
More than 145 students have entered our Medical Student Essay Competition!
Thank you to all who took the time and energy to submit an essay on the topic of “What’s your most important learning point about ME?”
One entrant said:
November 5, 2025 at 12:36 PM
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More than 145 students have entered our Medical Student Essay Competition!
Thank you to all who took the time and energy to submit an essay on the topic of “What’s your most important learning point about ME?”
One entrant said:
More than 145 students have entered our Medical Student Essay Competition!
Thank you to all who took the time and energy to submit an essay on the topic of “What’s your most important learning point about ME?”
One entrant said:
📢 Exciting news!
Today, we are proud to launch the Overlapping Illness Alliance, a coalition of charities working to improve recognition, care and support for those living with complex, overlapping conditions.
Today, we are proud to launch the Overlapping Illness Alliance, a coalition of charities working to improve recognition, care and support for those living with complex, overlapping conditions.
November 4, 2025 at 1:01 PM
📢 Exciting news!
Today, we are proud to launch the Overlapping Illness Alliance, a coalition of charities working to improve recognition, care and support for those living with complex, overlapping conditions.
Today, we are proud to launch the Overlapping Illness Alliance, a coalition of charities working to improve recognition, care and support for those living with complex, overlapping conditions.
Our Christmas Angels project is back! 😇
Now in its 15th year, our heartwarming Christmas Angels project enables people with ME to send Christmas cards to each other via the Action for ME office.
We know how valuable this project is for people with ME. Past participants have said:
Now in its 15th year, our heartwarming Christmas Angels project enables people with ME to send Christmas cards to each other via the Action for ME office.
We know how valuable this project is for people with ME. Past participants have said:
November 4, 2025 at 10:23 AM
Our Christmas Angels project is back! 😇
Now in its 15th year, our heartwarming Christmas Angels project enables people with ME to send Christmas cards to each other via the Action for ME office.
We know how valuable this project is for people with ME. Past participants have said:
Now in its 15th year, our heartwarming Christmas Angels project enables people with ME to send Christmas cards to each other via the Action for ME office.
We know how valuable this project is for people with ME. Past participants have said:
✨ It’s #TrusteesWeek and we’re proud to recognise the commitment, insight and expertise of our trustees.
🔦 Today, we’re shining a light on our newest trustees: Ros, Wendy, and Colin.
Thank you to all our trustees for everything you do to drive our work forward🙏
Read more: tinyurl.com/32mm2ppw
🔦 Today, we’re shining a light on our newest trustees: Ros, Wendy, and Colin.
Thank you to all our trustees for everything you do to drive our work forward🙏
Read more: tinyurl.com/32mm2ppw
November 3, 2025 at 1:53 PM
✨ It’s #TrusteesWeek and we’re proud to recognise the commitment, insight and expertise of our trustees.
🔦 Today, we’re shining a light on our newest trustees: Ros, Wendy, and Colin.
Thank you to all our trustees for everything you do to drive our work forward🙏
Read more: tinyurl.com/32mm2ppw
🔦 Today, we’re shining a light on our newest trustees: Ros, Wendy, and Colin.
Thank you to all our trustees for everything you do to drive our work forward🙏
Read more: tinyurl.com/32mm2ppw
The British Psychological Society Good Practice Guidelines for Psychologists Working with pPeople with ME/CFS have been updated this month.
The guidelines are to support people with the psychological impact of living with a long-term, debilitating physical condition.
The guidelines are to support people with the psychological impact of living with a long-term, debilitating physical condition.
November 3, 2025 at 12:41 PM
The British Psychological Society Good Practice Guidelines for Psychologists Working with pPeople with ME/CFS have been updated this month.
The guidelines are to support people with the psychological impact of living with a long-term, debilitating physical condition.
The guidelines are to support people with the psychological impact of living with a long-term, debilitating physical condition.
We recently launched our Big Survey! 🎉
We’ve already had over 2000 responses - thank you to everyone who’s taken part so far 🧡
Take part, read our FAQs, and find out more here: www.actionforme.org.uk/research-campaigns/our-research-work/big-survey/
We’ve already had over 2000 responses - thank you to everyone who’s taken part so far 🧡
Take part, read our FAQs, and find out more here: www.actionforme.org.uk/research-campaigns/our-research-work/big-survey/
October 31, 2025 at 10:03 AM
We recently launched our Big Survey! 🎉
We’ve already had over 2000 responses - thank you to everyone who’s taken part so far 🧡
Take part, read our FAQs, and find out more here: www.actionforme.org.uk/research-campaigns/our-research-work/big-survey/
We’ve already had over 2000 responses - thank you to everyone who’s taken part so far 🧡
Take part, read our FAQs, and find out more here: www.actionforme.org.uk/research-campaigns/our-research-work/big-survey/
Reposted by Action for ME
At Lib Dem Conference last month, I met with Scope, MS Society, Action for ME, and Parkinson's UK to discuss the urgent need to reform PIP assessments and the impact on those with overlapping and invisible disabilities.
October 27, 2025 at 10:21 AM
At Lib Dem Conference last month, I met with Scope, MS Society, Action for ME, and Parkinson's UK to discuss the urgent need to reform PIP assessments and the impact on those with overlapping and invisible disabilities.
Did you know we offer free counselling to young people aged 11 - 18?
Living with ME can be tough, but you don't have to face it alone 🧡
👉 Learn more: www.actionforme.org.uk/18-and-under/support-for-under-18/yp-counselling/
Living with ME can be tough, but you don't have to face it alone 🧡
👉 Learn more: www.actionforme.org.uk/18-and-under/support-for-under-18/yp-counselling/
October 24, 2025 at 2:21 PM
Did you know we offer free counselling to young people aged 11 - 18?
Living with ME can be tough, but you don't have to face it alone 🧡
👉 Learn more: www.actionforme.org.uk/18-and-under/support-for-under-18/yp-counselling/
Living with ME can be tough, but you don't have to face it alone 🧡
👉 Learn more: www.actionforme.org.uk/18-and-under/support-for-under-18/yp-counselling/
Could you be an angel this Christmas? 😇
Join Action for ME’s Christmas Angels project, back for its 15th year! 💌 Send or receive a thoughtful card from someone else with ME – all it takes is a card and a stamp.
Sign up now 👇
🔗 forms.gle/VQ51jyCiKGYN...
Join Action for ME’s Christmas Angels project, back for its 15th year! 💌 Send or receive a thoughtful card from someone else with ME – all it takes is a card and a stamp.
Sign up now 👇
🔗 forms.gle/VQ51jyCiKGYN...
October 24, 2025 at 9:51 AM
Could you be an angel this Christmas? 😇
Join Action for ME’s Christmas Angels project, back for its 15th year! 💌 Send or receive a thoughtful card from someone else with ME – all it takes is a card and a stamp.
Sign up now 👇
🔗 forms.gle/VQ51jyCiKGYN...
Join Action for ME’s Christmas Angels project, back for its 15th year! 💌 Send or receive a thoughtful card from someone else with ME – all it takes is a card and a stamp.
Sign up now 👇
🔗 forms.gle/VQ51jyCiKGYN...
Our medical student essay competition is back!
We are hosting an essay competition open to all medical students at any Medical School in the UK.
Students who take part will have an improved understanding of ME and, we hope, be better able to diagnose and support people with ME.
We are hosting an essay competition open to all medical students at any Medical School in the UK.
Students who take part will have an improved understanding of ME and, we hope, be better able to diagnose and support people with ME.
October 21, 2025 at 9:27 AM
Our medical student essay competition is back!
We are hosting an essay competition open to all medical students at any Medical School in the UK.
Students who take part will have an improved understanding of ME and, we hope, be better able to diagnose and support people with ME.
We are hosting an essay competition open to all medical students at any Medical School in the UK.
Students who take part will have an improved understanding of ME and, we hope, be better able to diagnose and support people with ME.
Wishing our incredible Great South Run team the very best of luck for today's event! 🎉🏃➡️
Thank you for fundraising to support our work and for helping to raise vital awareness of ME 🧡
Want to join next year's run? Register your interest: www.actionforme.org.uk/great-south-...
Thank you for fundraising to support our work and for helping to raise vital awareness of ME 🧡
Want to join next year's run? Register your interest: www.actionforme.org.uk/great-south-...
October 19, 2025 at 8:00 AM
Wishing our incredible Great South Run team the very best of luck for today's event! 🎉🏃➡️
Thank you for fundraising to support our work and for helping to raise vital awareness of ME 🧡
Want to join next year's run? Register your interest: www.actionforme.org.uk/great-south-...
Thank you for fundraising to support our work and for helping to raise vital awareness of ME 🧡
Want to join next year's run? Register your interest: www.actionforme.org.uk/great-south-...
🤝 We've recently launched our PRIME research project in partnership with the University of Edinburgh. Thank you to David Tuller and Chris Ponting for helping raise awareness of the importance of PRIME and ME research more generally.
Watch their interview here: www.youtube.com/watch?v=1dgKMO0tPBw
Watch their interview here: www.youtube.com/watch?v=1dgKMO0tPBw
October 16, 2025 at 9:02 AM
🤝 We've recently launched our PRIME research project in partnership with the University of Edinburgh. Thank you to David Tuller and Chris Ponting for helping raise awareness of the importance of PRIME and ME research more generally.
Watch their interview here: www.youtube.com/watch?v=1dgKMO0tPBw
Watch their interview here: www.youtube.com/watch?v=1dgKMO0tPBw
Reposted by Action for ME
Welsh Senedd Debate on Severe and Very Severe ME – 15th October - POSTPONED to 26th Nov.
Adam Price, MS, was due to lead the Members Debate on Severe and Very Severe ME tomorrow in the Welsh Senedd (Parliament), but on Sunday he suffered a close family bereavement. 1/4
Adam Price, MS, was due to lead the Members Debate on Severe and Very Severe ME tomorrow in the Welsh Senedd (Parliament), but on Sunday he suffered a close family bereavement. 1/4
October 14, 2025 at 1:06 PM
Welsh Senedd Debate on Severe and Very Severe ME – 15th October - POSTPONED to 26th Nov.
Adam Price, MS, was due to lead the Members Debate on Severe and Very Severe ME tomorrow in the Welsh Senedd (Parliament), but on Sunday he suffered a close family bereavement. 1/4
Adam Price, MS, was due to lead the Members Debate on Severe and Very Severe ME tomorrow in the Welsh Senedd (Parliament), but on Sunday he suffered a close family bereavement. 1/4
Reposted by Action for ME
The Big Survey is now live!
It has been such a privilege to get to work on this with such a wonderful, inspiring team at @actionforme.bsky.social, including our brilliant Patient and Public Involvement Group, made up of people with lived experience of ME and Long Covid.
It has been such a privilege to get to work on this with such a wonderful, inspiring team at @actionforme.bsky.social, including our brilliant Patient and Public Involvement Group, made up of people with lived experience of ME and Long Covid.
Our 2025 Big Survey is now open! 🎉
For more information, our FAQs, and to take part, head to our web page: www.actionforme.org.uk/research-campaigns/our-research-work/big-survey/
Thank you for supporting our research💙
🤝in collaboration with
@durhamimh.bsky.social @kacheston.bsky.social
For more information, our FAQs, and to take part, head to our web page: www.actionforme.org.uk/research-campaigns/our-research-work/big-survey/
Thank you for supporting our research💙
🤝in collaboration with
@durhamimh.bsky.social @kacheston.bsky.social
October 13, 2025 at 10:30 AM
The Big Survey is now live!
It has been such a privilege to get to work on this with such a wonderful, inspiring team at @actionforme.bsky.social, including our brilliant Patient and Public Involvement Group, made up of people with lived experience of ME and Long Covid.
It has been such a privilege to get to work on this with such a wonderful, inspiring team at @actionforme.bsky.social, including our brilliant Patient and Public Involvement Group, made up of people with lived experience of ME and Long Covid.
Reposted by Action for ME
🎉 We are delighted to launch this year’s Big Survey in collaboration with @actionforme.bsky.social! If you are in the UK living with ME or Long Covid with ME symptoms, we want to hear from you! tinyurl.com/2s4dbrkx
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2025 Big Survey
Find out how you can contribute to our 2025 Big Survey - a vital research project aiming to illustrate the impact of ME and long Covid.
tinyurl.com
October 13, 2025 at 1:53 PM
🎉 We are delighted to launch this year’s Big Survey in collaboration with @actionforme.bsky.social! If you are in the UK living with ME or Long Covid with ME symptoms, we want to hear from you! tinyurl.com/2s4dbrkx
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🧵
Our 2025 Big Survey is now open! 🎉
For more information, our FAQs, and to take part, head to our web page: www.actionforme.org.uk/research-campaigns/our-research-work/big-survey/
Thank you for supporting our research💙
🤝in collaboration with
@durhamimh.bsky.social @kacheston.bsky.social
For more information, our FAQs, and to take part, head to our web page: www.actionforme.org.uk/research-campaigns/our-research-work/big-survey/
Thank you for supporting our research💙
🤝in collaboration with
@durhamimh.bsky.social @kacheston.bsky.social
October 13, 2025 at 10:19 AM
Our 2025 Big Survey is now open! 🎉
For more information, our FAQs, and to take part, head to our web page: www.actionforme.org.uk/research-campaigns/our-research-work/big-survey/
Thank you for supporting our research💙
🤝in collaboration with
@durhamimh.bsky.social @kacheston.bsky.social
For more information, our FAQs, and to take part, head to our web page: www.actionforme.org.uk/research-campaigns/our-research-work/big-survey/
Thank you for supporting our research💙
🤝in collaboration with
@durhamimh.bsky.social @kacheston.bsky.social
Our first Big Survey in over 5 years launches next week! You can sign up in advance to receive the survey once it's live, head to our web page to find out more: www.actionforme.org.uk/research-cam...
📅Opens 10am, Monday 13th October - 27th January 2026
📅Opens 10am, Monday 13th October - 27th January 2026
October 9, 2025 at 10:46 AM
Our first Big Survey in over 5 years launches next week! You can sign up in advance to receive the survey once it's live, head to our web page to find out more: www.actionforme.org.uk/research-cam...
📅Opens 10am, Monday 13th October - 27th January 2026
📅Opens 10am, Monday 13th October - 27th January 2026