Action for ME

Action for ME Providing support & holistic healthcare services to people of all ages affected by ME. Charity number: 1036419 / SC040452

Views expressed by our followers on this page are not necessarily representative of Action for ME.

🧬 The findings from the LOCOME project, which we shared in December, have now been published in the Journal of Translati...
17/06/2026

🧬 The findings from the LOCOME project, which we shared in December, have now been published in the Journal of Translational Medicine.

Led by Precision Life, in collaboration with Action for ME, lived experience representatives, and the University of Edinburgh, the study used data from DecodeME participants to explore genetic risk factors for ME and commonalities with Long Covid, helping to build understanding of the biological mechanisms that may be involved in both conditions.

You can read the full paper here: https://link.springer.com/article/10.1186/s12967-026-08167-1

You can also read our original blog post explaining the findings here: https://www.actionforme.org.uk/locome-project-major-me-and-long-covid-genetics-findings-announced/

📢 We have submitted written evidence on the Health Modernisation Bill, calling for stronger accountability, better data,...
17/06/2026

📢 We have submitted written evidence on the Health Modernisation Bill, calling for stronger accountability, better data, clearer NICE compliance, and greater investment in ME research.

The Bill aims to improve accountability, patient safety and consistency across health services. For people with ME, these aims are vital.

Our response was informed by data from our Big Survey. Thank you to everyone who took part and shared their experiences.

🔗 Find out more about our response here: https://www.actionforme.org.uk/health-modernisation-bill-response

17/06/2026

At Action for ME, our incredible fundraisers help support the work we do to improve the lives of people affected by ME.

Whether you’re taking on a run, a walk, or tackling an obstacle course, feel part of something bigger by taking part in a fundraising event for Action for ME, and help us change lives 💙

Our fundraising team will support you with your fundraising every step of the way 💪

Ready to make an impact? Explore upcoming events on our website 👇

https://www.actionforme.org.uk/support-us/fundraise/find-an-event/

📢 Parents and carers of children and young people with ME/CFS - register for our Family Support Webinar!🗓️ Thursday 2 Ju...
17/06/2026

📢 Parents and carers of children and young people with ME/CFS - register for our Family Support Webinar!

🗓️ Thursday 2 July 2026

🕑 11am to noon

📍Online via Zoom

The webinar will be delivered by Keely, our Family Services Coordinator, and Juliet, our Information and Support Officer.

The webinar will focus on working with your child’s school and will cover topics including:

· What meetings to ask for, how to prepare for them and who to ask to be present

· Asking for IHCPs and exploring adaptations and provisions

· Important milestones to be aware of, such as transitioning to secondary school, mock and GCSE exams.

There will also be a Q&A session where you can ask Keely and Juliet questions related to these topics.

To register for your place, sign-up here 👇

https://us02web.zoom.us/webinar/register/WN_LMf-jgY3Q32iVExbIRqxMg

Capacity for this webinar is capped at 20 places. If there are no places left available, you can still register via the same link to be sent our recording of the webinar by email.

Please note, this is our pilot webinar of the series, and we will be sending out feedback forms afterwards to shape future webinars.

❔ Are you a parent or carer of a young person with ME who is taking their exams or mock exams soon?We know that exam sea...
16/06/2026

❔ Are you a parent or carer of a young person with ME who is taking their exams or mock exams soon?

We know that exam season can be particularly challenging for children and young people with ME.

We are here to help 🧡

Our counsellors provide a safe space for children and young people to talk about whatever they want to discuss. They understand ME and the impact it can have on a young person's life.

To find out more about our FREE Young People’s Counselling service, including how to access it, visit our website 👇

https://www.actionforme.org.uk/18-and-under/support-for-under-18/yp-counselling/

📢 Sharing for info: have your say on care for multiple long-term conditionsA new survey is asking people with multiple l...
16/06/2026

📢 Sharing for info: have your say on care for multiple long-term conditions

A new survey is asking people with multiple long-term conditions, as well as carers and health and care professionals, to help shape future research priorities around models of care.

If you live with ME or Long Covid alongside other long-term conditions, you can take part by selecting ‘Other’ when asked about your condition.

We have contacted the survey team to ask for ME and Long Covid to be included as options in any future surveys linked to this Priority Setting Partnership.

We know that engaging with surveys can be difficult due to the impact of symptoms and limited energy. Where people are able to engage, sharing lived experiences can help highlight the realities of life with ME and Long Covid.

Take part here: https://exe.qualtrics.com/jfe/form/SV_5dwZnZhbXGxhgR8

Play our weekly lottery and be in with the chance of winning big prizes each week, all whilst supporting people with ME!...
15/06/2026

Play our weekly lottery and be in with the chance of winning big prizes each week, all whilst supporting people with ME!

With every £1 you play, 50p comes back to Action for ME and helps us change the lives of people affected by ME 🧡

To play our lottery, visit our website, where you can find more information about prizes and game rules 👇

https://www.actionforme.org.uk/support-us/other-ways-to-support-us/play-the-unity-lottery/

Players must be 18 or over. Please gamble responsibly.

This we are celebrating all of the incredible fundraisers, some of whom are pictured, who fundraised for Action for ME...
12/06/2026

This we are celebrating all of the incredible fundraisers, some of whom are pictured, who fundraised for Action for ME over the last couple of months!

⭐ Felix ran the Hackney Half and raised an amazing £1,120! Felix chose to fundraise for us as his mum lives with ME and he’s seen the impact of the condition

⭐ We had 5 brilliant runners who took part in the Edingburgh Marathon Festival. Together they raised a fantastic £4,058!

⭐ Fox held an Twitch charity streaming event, Foxnanigans, on behalf of his partner who has ME. Fox raised an incredible £1,421!

⭐ Fran ran the Manchester 10K. She had contacted us needing help and advice and wanted to fundraise to give back to us the support we gave her. Fran raised an amazing £640!

⭐ Gary ran 344 miles (13 marathons back-to-back!) and raised an fantastic £961! He also won two awards for the amount of miles he’s run over the years. Gary chose to fundraise for us because he knows how misunderstood ME is.

Other fundraising events that took place in April and may include a 191 mile coastal hike, a crafting of blue items campaign, the Garioch Half Marathon and the Brighton Marathon Week, which altogether totalled an incredible £2,482!

The support of our amazing fundraisers means that we can continue to support people affected by ME.

We are so grateful to all of our community fundraisers for fundraising for us 🧡

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

https://www.actionforme.org.uk/support-us/fundraise/

📢 Register for the PRIME International Symposium, and join researchers, clinicians and people with lived experience to e...
11/06/2026

📢 Register for the PRIME International Symposium, and join researchers, clinicians and people with lived experience to explore emerging ME/CFS research.

🗓️ 28 September 9am – 29 September 2pm

📍John McIntyre Conference Centre, Edinburgh and online

This 2-day meeting will bring together cross-disciplinary researchers, clinicians, industry, charities and people with lived experience of ME/CFS to:

🔬 discuss recent developments in ME/CFS research

🔬 challenge current thinking and approaches

🔬 identify new opportunities to work together to develop new diagnostics and effective therapies.

Register today to secure your online place 👇

https://www.tickettailor.com/events/universityofedinburgh12/2155140

If you are interested in attending in-person, you can also note this on the registration form and may be offered one of the remaining free places.

The PRIME Symposium will also be recorded for those unable to attend.

More information about this hybrid event can be found on our website 👇

https://www.actionforme.org.uk/register-for-the-prime-international-symposium/

📢 Parliamentary written questions on ME have been submitted and answered.Baroness Scott, who is part of our Parliamentar...
10/06/2026

📢 Parliamentary written questions on ME have been submitted and answered.

Baroness Scott, who is part of our Parliamentary Champions Network, asked four questions which Action for ME helped draft for World ME Day.

The questions focussed on severe and very severe ME, and what guidance is in place to support people with severe and very severe ME in hospital and community services.

You can read the full questions and answers on our website 👇

https://www.actionforme.org.uk/parliamentary-questions-on-severe-and-very-severe-me-answered/

We are grateful to Baroness Scott and our Parliamentary Champions for continuing to raise these important questions in Parliament. We stand with the ME community in urgently calling for stronger action to improve care and support for people with ME, particularly those who are severely and very severely affected. We will continue to work with Parliament to push for support, accountability and meaningful change.

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