MEAction UK

Help Us Advance ME Research move a blue and red strand of DNA. Your input could lead to a blood test for ME. Survey closes 27th February 2026. Blue background with MEAction UK and UEA logos in black.

MEAction UK is working on a survey of #pwME with the University of East Anglia (UEA) Medical School to assist in developing a research application. For more Info & take part: meaction.org.uk/news/2026/02...

#MyalgicEncephalomyelitis

NHS Highland to offer virtual chronic fatigue syndrome service NHS Highland plans to provide the help as part of its long Covid support service.

NHS Highland have announced that its new virtual service for ME/CFS will be available "from spring"
NHS Highland's full spending proposal is available to read here bit.ly/4a9Ium4


#MyalgicEncephalomyelitis #MyalgicE #HealthEquality

New Trustees Needed! White text on blue background with red illustrated hands reaching for hearts. Text - MEAction UK is excited to share this opportunity to become part of our Board of Trustees! This is an opportunity to use your skills to support the growth of a grassroots charity. Contact us today to learn more about this exciting volunteer opportunity. Lean more www.meaction.org.uk

Reminder! MEAction UK is looking for trustees! This is an opportunity to use your skills to support the growth of a grassroots organisation fighting for awareness & care for people with ME. shorturl.at/tZTMG
#CharityTrustee #MyalgicEncephalomyelitis

New Trustees Needed! White text on blue background with red illustrated hands reaching for hearts. Text - MEAction UK is excited to share this opportunity to become part of our Board of Trustees! This is an opportunity to use your skills to support the growth of a grassroots charity. Contact us today to learn more about this exciting volunteer opportunity. Lean more www.meaction.org.uk

A reminder that MEAction UK is looking for new trustees! This is an opportunity to use your skills to support the growth of a grassroots organisation fighting for awareness & care for people with ME. shorturl.at/tZTMG
#CharityTrustee #MyalgicEncephalomyelitis

On a blue background an image of a piece of paper being put into an envelope. Sign up for our UK mailing list is written on the paper. MEAction logo in at the top and meaction.org.uk is at the bottom of the image.

Remember to sign up for our UK mailing list to keep informed about our work. meaction.org.uk/contact
#MyalgicEncephalomyelitis

Heading from The Courier - Fife mum's health struggle reveals alarming lack of specialist care at NHS Fife. Photo of white women with grey bobbed hair wearing a dark blue top with spots.

Great work from #MEAction Scotland. At the Scottish Liberal Democrat Party Conference they spoke to journalist, Justin Bowie of @thecourieruk & put Justin in touch with supporters. www.thecourier.co.uk/fp/politics/...

#MyalgicEncephalomyelitis

New Trustees Needed! White text on red background with blue illustrated hands reaaching for hearts. Text - MEAction UK is excited to share this opportunity to become part of our Board of Trustees! This is an opportunity to use your skills to support the growth of a grassroots charity. Contact us today to learn more about this exciting volunteer opportunity. Lean more www.meaction.org.u

A reminder that MEAction UK is looking for new trustees! This is an opportunity to use your skills to support the growth of a grassroots organisation fighting for awareness & care for people with ME. shorturl.at/tZTMG
#CharityTrustee #MyalgicEncephalomyelitis

New Trustees Needed! White text on red background with blue illustrated hands reaaching for hearts. Text - MEAction UK is excited to share this opportunity to become part of our Board of Trustees! This is an opportunity to use your skills to support the growth of a grassroots charity. Contact us today to learn more about this exciting volunteer opportunity. Lean more www.meaction.org.u

MEAction UK is looking for trustees! This is an opportunity to use your skills to support the growth of a grassroots organisation fighting for awareness & care for people with ME. Read our Trustee Role Description shorturl.at/tZTMG
#CharityTrustee #MyalgicEncephalomyelitis

Remember to sign up for our mailing list to keep informed about work. meaction.org.uk/contact
#MyalgicEncephalomyelitis

Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) Read about myalgic encephalomyelitis (chronic fatigue syndrome or ME/CFS). It’s a long-term condition with a wide range of symptoms including extreme tiredness.

#MEActionUK emailed @NHSEngland about incorrect info on its ME/CFS webpage. Our request will be 'added to their backlog for a member of the website team to pick up when there is capacity'
bit.ly/3NoAFRF
#MyalgicEncephalomyelitis #HealthEquality

BBC Inside Science - How rare are Greenland’s rare earth elements? - BBC Sounds What rare earths have been found in Greenland, and why do we want them?

It's good to see BBC Inside Science covering Danny Altman's research at Imperial College funded by the ME Association. Coverage starts at 6.55.

Amanda Stephen, a white woman with mid length brown hair wearing glasses and a deep pink patterned top stands outside in front of plants and shrubs.

We start 2026 by bringing you an article from The Press and Journal by Justin Bowie detailing Amanda's struggles with ME and disbelief and quoting a #MEAction Scotland volunteer.
Read the full article here: shorturl.at/7mbuK

#MyalgicEncephalomyelitis #MillionsMissingUK

As we come to the end of 2025 it's time to thank you all for your support of our recent launch as a UK charity & all our amazing volunteers. Please find list of resources which we hope will be helpful over the holiday.
meaction.org.uk/news/2025/12...

A Group of five people smiling at the camera. From left to right they are Kim Gurav, Gillian Grant, Emma Shorter, Stuart Murdoch and Janet Sylvester.

FLASHBACK!

OFFICIAL LAUNCH OF #MEACTION SCOTLAND

Kim Gurav, Emma Shorter and Janet Sylvester officially launched #MEAction Scotland As we launch as a UK charity, join us and help us fight for equitable research and treatment.

meaction.org.uk

Poster of Unrest film with Jen Brea lying on a bed with electrodes attached to her head. Flashback stamp at top and #MEAction UK and Scotland logos and Flashback October 2017 in white text at bottom.

Flashback! October, 2017 - Unrest shown in Parliament.



There is still much to do but, for now, enjoy our flashbacks and remember how much it took to get us here. ❤️
Sign up: meaction.org.uk/contact

Volunteer: www.totalgiving.co.uk/donate/meact...


#MyalgicEncephalomyelitis

Two women at at #MillionsMissing event, one wears a t-shirt with #MEAction logo, the other carries a poster. Flashback stamp top of image with #MEAction UK & Scotland logos and Flashback May 2017 in white text at bottom of image.

Founders of #MEAction Scotland, Janet and Emma hold a 'Join Us' flyer wearing #MillionsMissing red and white t-shirts. Flashback stamp top of image with #MEAction UK & Scotland logos and Flashback May 2017 in white text at bottom of image.

Shoes arranged on pavement as part of a #MillionsMissing event with red and white banner on railings in the background. Flashback stamp top of image with #MEAction UK & Scotland logos and Flashback May 2017 in white text at bottom of image.

Flashback!

We held our first #MillionsMissing in Scotland! Other UK protests in Birmingham, London, Newcastle, Newry & the Isle of Man.

Join us! meaction.org.uk/contact

Donate/volunteer: www.totalgiving.co.uk/donate/meact...

#MyalgicEncephalomyelitis

Flashback to 2016!

In January 2016 we gathered over 15,000 signatures & the reply wasn't enough then or now. There is still work to do. Join us! meaction.org.uk/contact

Donate: www.totalgiving.co.uk/donate/meact...

#MyalgicEncephalomyelitis #MillionsMissing

Flashback to 2016!

In January 2016 we gathered over 15,000 signatures & the reply wasn't enough then or now. There is still work to do. Join us! meaction.org.uk/contact

Donate: www.totalgiving.co.uk/donate/meact...

#MyalgicEncephalomyelitis #MillionsMissing

FLASHBACK to May 2020

I GOT A VIRUS, I DIDN'T DIE, BUT I NEVER RECOVERED.

People with ME were raising the alarm. www.youtube.com/watch?v=e3Pd...


UK mailing list. meaction.org.uk/contact

Donate or volunteer: www.totalgiving.co.uk/donate/meact...


#MyalgicEncephalomyelitis #MillionsMissing

Shoes laid out in front of the DHSC. . Flashback May 2016 at bottom with UK and Scotland logos in white text. Red ‘Flashback” stamp on top right corner.

Shoes laid out in front of the DHSC. Poster surrounded by shoes and people saying ‘We are not our disease. We are not the stigma. #MillionsMissing. Flashback May 2016 at bottom with UK and Scotland logos in white text. Red ‘Flashback” stamp on top right corner.

Shoes laid out in front of the DHSC. Poster surrounded by shoes and people saying ‘We are not our disease. We are not the stigma. #MillionsMissing. Flashback May 2016 at bottom with UK and Scotland logos in white text. Red ‘Flashback” stamp on top right corner.

Flashback to May 2016!

Our first UK #MillionsMissing event outside the DHSC.

For regular updates sign up for our UK mailing list. meaction.org.uk/contact

Donate /volunteer: www.totalgiving.co.uk/donate/meact...
#MyalgicEncephalomyelitis #MEAwareness #MillionsMissingUK #InvisibleIllness

A loop of ribbon with UK Union flag and US flag with the headline 'Exciting News'. MEAction UK is now officially and independent UK registered charity. Logo of MEAction UK at bottom of page. All text in red with a red border to image. Ribbon in red, white and blue.

We are delighted that MEAction UK has officially become an independent, registered UK charity. This marks a new chapter in our journey to secure better recognition, research and support for people with ME in the UK.
#CharityAnnouncement #MyalgicEncephalomyelitis

As my daughter died of ME, the state met in secret to blame me Maeve Boothby O’Neill’s mother had no idea she was being accused in private of causing or fabricating the illness that would take her life aged 27

The horrendous situation that Sarah Boothby found herself in as her daughter lay dying is still being faced by parents, usually mothers, around the UK.

ow.ly/nlhv50WCEp4

#MyalgicEncephalomyelitis #VerySevereME

BBC One - Reporting Scotland, News at Seven, 06/08/2025 More from the day’s top stories and communities across Scotland.

As part of a news piece on Decode ME for Reporting Scotland, News at Seven, one of our amazing #MEAction Scotland volunteers, Amanda Stephen, has been interviewed about her experience of ME & the need for research.
ow.ly/LKKr50WAI8Y

#DecodeME #MyalgicEncephalomyelitis

Home - DecodeME The world's biggest study into the causes of ME/CFS.

Advance notice so you can plan your energy use and pace. We believe that Decode ME will announce results around 7pm on Wednesday 6th August. They will post any news on their website. ow.ly/6TeC50Wzzhy

#DecodeME #MyalgicEncephalomyelitis #PatientAdvocacy #MEAwareness

On a teal coloured background with the Royal crest in white text saying Department of Health & Social Care to top right with MEAction UK’s response to the DHSC’s ME/CFS Delivery Plan at the bottom centre. All text in white.

Our response to the DHSC’s ME/CFS Delivery Plan - a plan without money, mandates or deadlines is not a plan - it is a wish‑list -@rthonwesstreeting.bsky.social @ashleydaltonmp.bsky.social

ow.ly/1anc50WwzAM

#MyalgicEncephalomyelitis #VerySevereME #pwME #pwLC #ChronicIllnessUK #DisabilityAdvocacy

Minutes for APPG meeting: 14 May - All-Party Parliamentary Group on ME The APPG held its most recent meeting of the Parliament on Wednesday 14 March. This was the first joint-meeting with the APPG on Long Covid, also Chaired by Jo Platt MP. The Rt Hon Stephen Timms was i...

The APPG held its most recent meeting of the Parliament on Wednesday 14 March.

This was the first joint-meeting with the APPG on Long Covid, also Chaired by Jo Platt MP.

ow.ly/r0FR50WbqZr

#MillionsMissing #pwME #pwLC

thebmj in white text on bright blue background.

We are pleased that our response to the recent opinion piece, 'Patients with severe ME/CFS need hope and expert multidisciplinary care' in the BMJ has been published but disappointed by it's commissioning & publication.

ow.ly/vsOE50VVoEx

#VerySevereME #MillionsMissing

We are honoured @swiftsandswallows.bsky.social
shared this SOS made in memory of her daughter Isla who died last year.

@rthonwesstreeting.bsky.social nwesstreeting.bsky.social, @ashleydaltonmp.bsky.social. Fund ME research to stop this happening again.

#DisabilitySOS #MillionsMissing.

Five postcards with black and white illustrations of tombstones on the front in memory of 'My Career' Lost to Long Covid. SOS in red on the back with messages to MPs and funding bodies.

Thanks bb.ealain for making these eye-catching postcards for @rthonwesstreeting.bsky.social @ashleydaltonmp.bsky.social and the funding bodies.

Help by posting ❤️ sharing #MillionsMissing #DisabilitySOS posts today and tagging the government and funders!

Info: ow.ly/OuTu50VQOvw

People with ME are calling on you to fund ME research @rthonwesstreeting.bsky.social @ashleydaltonmp.bsky.social