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

#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#MEActionUK#MyalgicEncephalomyelitis #HealthEquality

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.

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#MEAction #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...

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

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

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...#MillionsMissing #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

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...#MillionsMissing#MyalgicEncephalomyelitis #MEAwareness #MillionsMissingUK #InvisibleIllness

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

Our 'benefits' group was thrilled to have an amazing opportunity recently to talk to Social Security Scotland staff (devolved benefits delivery body) about the reality of Long Covid, ME/CFS, vax injury, high clinical risk, & the need for inclusive assessment & delivery processes. Thanks so much! 🙏

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 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

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 [email protected] @ashleydaltonmp.bsky.social ow.ly/1anc50WwzAM #MyalgicEncephalomyelitis #VerySevereME #pwME #pwLC #ChronicIllnessUK #DisabilityAdvocacy

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

We have a limited amount of #MEAction Millions Missing t-shirts left for sale! They're £15 and come in S (35-37"), M (38-40"), L (41-43") and XL (44-46"). Fabric is cotton with Lycra in the collar. To buy, email [email protected] with your name, address and size, and we'll send a payment link.

Success for #MEAction Scotland Campaign!! The @scottishgov.bsky.social withdraws outdated guideline and endorses NICE. The Scottish Government has withdrawn the Scottish Good Practice Statement on ME/CFS. Thanks to @jennimintomsp.bsky.social for her support.

Tomorrow's a key event in #MEAwarenessWeek - Blue Sunday, the tea party for ME 🫖 Run by Anna Redshaw for 13 years 💙 More info on Anna's website: the-slow-lane.com/blue-sunday-... We would be so grateful if you choose to support us with any donations by selecting #MEAction UK on the donations page.

Our founder @salwitcher.bsky.social speaking at the #MillionsMissing event outside the Scottish Parliament on Wednesday 14 May, to draw attention to the abandonment of people with ME and the need for urgent government action.

This year, #MillionsMissing Scotland raised a red alert for ME 🚨 Our @parliament.scot rally put pressure on the Scottish Government to set out how they'll make pledged funding for ME specialist support a reality. 19 MSPs joined us & 6 addressed the crowd. Listed in thread ⬇️ 📸 credit: Noel Fenech

It was a busy, successful day outside @parliament.scot for #MillionsMissing Scotland 👏 Lots of MSPs, including @jennimintomsp.bsky.social, came out to speak to us and hear from #pwME. Many MSPs told us they came out because their constituents got in touch, so well done to everyone who emailed. 🧵

Thanks for joining us at #MillionsMissing Scotland today @foysolchoudhury.bsky.social and supporting the red alert for ME 🚨

#MillionsMissing t-shirts for sale! Limited numbers! £15 each Sizes: Medium (chest 38-40") Large (chest 41-43") X-Large (chest 44-46") Let us know if you would like one and we'll be in touch. Unsold t-shirts will be available to buy on 14th May (cash only)

In Who Wants Normal?, I loved chatting to Jameela Jamil, Rosie Jones, Nikki Fox and more about dating and friendships. I wrote for @theipaper.com about one hidden aspect: how friends can go quiet if we’re going through health problems (and what might help). inews.co.uk/inews-lifest...

Thousands demand withdrawal of review article recommending exercise therapy for chronic fatigue syndrome Links in image: www.cochranelibrary.com/cdsr/doi/10.... retractionwatch.com/2025/01/23/t... Screenshot from the AMMES May email newsletter #MEcfs #CFS

Anyone good at telling their MSPs what's important? Get involved and tell them to spend the money they've earmarked so we can get beyond zero treatment for #MECFS in Scotland. You don't need to have #ME to write - just a good heart which recognises our plight.

Fellow #pwME and #LongCovid in #Scotland - please give MEAction Scotland a follow, and then use their template to contact your MSP to ensure that the £4.5m for improving medical care for #MECFS in the scottish budget actually gets spent sensibly this financial year!

For #MillionsMissing 2025 in #Scotland, we're raising a red alert 🚨 Spread the word! The Scottish Budget pledged £4.5m for ME specialist support - the clock is ticking to spend it. Email your MSPs & join us @parliament.scot or support online. Info & template email: www.meaction.net/2025/04/27/m...

One month until #MillionsMissing 2025 & it’s time to organise and send our SOS signals for funded research. We want to flood the funding organisations online & in real life with our SOS. ow.ly/w2VP50VzpJZ #pwME #MECFS #LongCovid #MyalgicEncephalomyelitis #disability

It was good to meet Prof Jack Lambert of @lymeresourcecentre.bsky.social today at the final day of the #RCPCH25 @rcpch.bsky.social conference. #MyalgicEncephalomyelitis #pwME #pwLC #LongCovid #disabilityawareness #LymeDisease

Our volunteers are working hard at #RCPCH25 talking to delegates and meeting other charities. Yesterday, Helen was delighted to meet Vicky from @panspandasuk.bsky.social . Come to see us at Stand D6 @rcpch.bsky.social to learn more about ME. #MyalgicEncephalomyelitis #pwME #pwLC #LongCovid

We have had a busy start to the day at @rcpch.bsky.social conference in Glasgow. Interest from both medical students and paediatricians, particularly in NICE key symptoms. Visit us at #RCPCH25 Stand D6 to learn more. #MyalgicEncephalomyelitis #pwME #LongCovid

Delighted to have Nigel Speight at the @meactionuk.bsky.social stand at the #RCPCH25 conference for @rcpch.bsky.social talking to other paediatricians & explaining how they can help children and young people with ME. Visit us at Stand D6 to learn more. #MyalgicEncephalomyelitis #pwME #LongCovid

Preparations are underway for the MEAction UK stand at @rcpch.bsky.social conference in Glasgow. Great work by Susan Cole of @meactionuk.bsky.social and Helen Brownlie - 25% ME Group. If you are attending the conference come and say hello. We are at stand D6. #RCPCH25 #MyalgicEncephalomyelitis

We are supporting this call from [email protected] to invest in Long Covid & M.E. Research. Please sign and share if possible. ow.ly/KPy750VoerQ #FundOurFuture #LCandME #FundThePlan