MEAction UK
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meactionuk.bsky.social
MEAction UK
@meactionuk.bsky.social
190 followers 58 following 46 posts
Our movement fights for recognition, education, and research so that one day all people with ME (myalgic encephalomyelitis) will have access to rapid diagnosis, and compassionate, effective care.
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meactionuk.bsky.social
Remember to sign up for our mailing list to keep informed about work. meaction.org.uk/contact
#MyalgicEncephalomyelitis
January 19, 2026 at 3:35 PM
meactionuk.bsky.social
#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
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.
bit.ly
January 15, 2026 at 1:04 PM
meactionuk.bsky.social
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.
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?
www.bbc.co.uk
January 9, 2026 at 1:45 PM
meactionuk.bsky.social
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
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.
January 5, 2026 at 12:55 PM
meactionuk.bsky.social
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...
December 22, 2025 at 9:45 AM
meactionuk.bsky.social
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
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.
December 14, 2025 at 11:20 AM
meactionuk.bsky.social
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
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.
December 13, 2025 at 2:55 PM
meactionuk.bsky.social
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
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.
December 13, 2025 at 10:15 AM
meactionuk.bsky.social
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
December 12, 2025 at 3:20 PM
meactionuk.bsky.social
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
December 11, 2025 at 3:09 PM
meactionuk.bsky.social
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
December 11, 2025 at 10:30 AM
meactionuk.bsky.social
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
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.
December 10, 2025 at 9:40 AM
meactionuk.bsky.social
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
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.
December 9, 2025 at 12:04 PM
meactionuk.bsky.social
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
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
ow.ly
August 12, 2025 at 10:16 AM
meactionuk.bsky.social
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
BBC One - Reporting Scotland, News at Seven, 06/08/2025
More from the day’s top stories and communities across Scotland.
ow.ly
August 6, 2025 at 3:52 PM
meactionuk.bsky.social
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
Home - DecodeME
The world's biggest study into the causes of ME/CFS.
ow.ly
August 5, 2025 at 11:18 AM
meactionuk.bsky.social
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
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.
July 29, 2025 at 10:55 AM
meactionuk.bsky.social
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
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...
ow.ly
June 18, 2025 at 11:00 AM
meactionuk.bsky.social
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
thebmj in white text on bright blue background.
May 21, 2025 at 2:20 PM
meactionuk.bsky.social
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.
May 13, 2025 at 10:57 AM
meactionuk.bsky.social
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
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.
May 12, 2025 at 3:11 PM
meactionuk.bsky.social
People with ME are calling on you to fund ME research @rthonwesstreeting.bsky.social @ashleydaltonmp.bsky.social
May 12, 2025 at 12:15 PM
meactionuk.bsky.social
It's #MillionsMissing!!!

Share your 🆘 on social media today & tag us
@MEActNetUK
using hashtags #DisabilitySOS & #MillionsMissing. 📣

Funding org tags👇
ow.ly/ewnZ50VCe0F
If you can't post can you ❤️ & share?

#MillionsMissing #DisabilitySOS #MyalgicEncephalomyelitis
Send your S.O.S. today! in black with #MEAction UK & Scotland and #MillionsMissing at bottom of page in white text. Photograph of a clear bottle with cork lying on a golden sandy beach lapped by waves with S.O.S. written on a large piece of white paper inside.
May 12, 2025 at 8:50 AM
meactionuk.bsky.social
Share your 🆘 on social media 12th May & tag us
@MEActNetUK
using hashtags #DisabilitySOS & #MillionsMissing. 📣

Funding org tags👇
ow.ly/ewnZ50VCe0F

If you can't post can you ❤️ & share?

#MillionsMissing #DisabilitySOS #pwME #MyalgicEncephalomyelitis
May 10, 2025 at 4:35 PM
meactionuk.bsky.social
TRIGGER WARNING
Tell MRC @rthonwesstreeting.bsky.social @ashleydaltonmp.bsky.social, the DHSC & NIHRresearch
that money invested in ME research will prevent further tragedies like the death of Sophia Mizra.👇
meaction.net/2025/04/11/s...

#MillionsMissing #DisabilitySOS #MyalgicEncephalomyelitis 🆘
An image of Sophia Mizra, a young white woman with sort dark hair wearing a blue top on a red background. Headline 'Why your S.O.S. is urgent' and #MEAction UK, Scotland & #MillionsMissing logos in black at the bottom.
May 3, 2025 at 5:40 PM