Despite the fact that the DHSC's own final delivery plan (published July 2025) highlighted the URGENT need for specialist services for those with very severe ME #MyalgicEncephalomyelitis #VerySevereME #HealthEquality

Ask your MP to put a health quesiton down on why the DHSC have paused action on commissioning a specialised service for very severe ME/CFS until April 2027 at the earliest.

The DHSC paused action on commissioning a specialised service for very severe ME/CFS until April 2027 at earliest. This isn’t acceptable @rthonwesstreeting.bsky.social! Sign up for our mailing list meaction.org.uk/sign-up for more news. #MyalgicEncephalomyelitis #VerySevereME

Another heartbreaking case of a very severe ME sufferer. Tomos is in Wales but there is nowhere treating the very severe anywhere in the UK. www.bbc.co.uk/news/article... #MyalgicEncephalomyelitis #VerySevereME

Children and young people may grieve changed abilities, missed milestones, friendships that slip, and a “before” life. Want to know how to help? Download this toolkit ➡️ bit.ly/4qCMCkL

In an election year, speaking to prospective parliamentary candidates is more important than ever. Last weekend, our volunteers spoke to three PPCs @snp.org Spring conference - @thewliss.bsky.social Kate Campbell and Steven Bonnar #MyalgicEncephalomyelitis #HealthEquality#MyalgicE#MyalgicE

Many children and young people take on caring roles without identifying as a young carer. This can mean key support they are entitled to is missed. Help make sure they’re supported effectively. Check out this toolkit bit.ly/4qCMCkL #BrainAwarenessWeek #DontAssumeImOK

Children and young people affected by neurological conditions can hide the impact. This is known as “masking” and can delay support. Do you work with children and young people? Check out this toolkit ➡️ bit.ly/4qCMCkL #BrainAwarenessWeek #DontAssumeImOK

#MEAction Scotland thank @BenMacpherson for his tireless support since our launch in 2018. Due to his recent appointment as a Minister, Ben is stepping down as our official parliamentary champion. We look forward to working with our new SNP champion, @PaulMcLennan7 #MyalgicE

Neurological conditions can co-occur with anxiety, depression, behavioural change and more. Read our toolkit on how to support children and young people impacted by neurological conditions ➡️ bit.ly/4qCMCkL #BrainAwarenessWeek #DontAssumeImOK

At least 1 in 6 people lives with a neurological condition, including children and young people. The mental health impact of these conditions can often be hidden or misunderstood. Do you work with young people? Check out this toolkit @neuroalscotland.bsky.social bit.ly/4qCMCkL #BrainAwarenessWeek

Today is Long Covid Awareness Day. Now in its 4th year, this year's Long Covid Awareness Day focuses on the heart problems which can affect people living with Long Covid #LongCovid #ChronicIllness #LongCovidAwareness

During a busy day @theSNP Spring conference, #MEAction Scotland engaged with many MSPs, including Cabinet Secretary for Health and Social Care, Neil Gray, Minister for Public Health and Women's Health, @jennimintomsp.bsky.social and First Minister, @johnswinney.bsky.social#MEAction #MyalgicE #HealthEquality

Brain Awareness Week is coming soon. This year, we are raising awareness of the impact of neurological conditions on the mental health of children and young people. Watch out for our posts throughout the week. neuroalscotland.bsky.social #BrainAwarenessWeek #DontAssumeImOk

#MEAction Scotland volunteers recently met with staff from NHS Lothian to discuss its guidance for GPs who are considering referring patients to the ME/CFS clinic at Astley Ainslie Hospital.

Another weekend, another party conference. This time it was the Scottish Labour Party Conference, a single day conference which proved both busy and fruitful for #MEAction Scotland volunteers, Janet and Judith. #MyalgicEncephalomyelitis#MyalgicE#MyalgicE #HealthEquality

#MEAction Scotland has been contacted by the Long Covid service within NHS Ayrshire & Arran. They are asking the ME/CFS community to complete a short survey to help them design the new service they’re setting up with their share of the £4.5 million announced by the Scottish Government last autumn.

𝗜𝘀 𝘁𝗵𝗲 𝘁𝗶𝗱𝗲 𝘁𝘂𝗿𝗻𝗶𝗻𝗴 𝗼𝗻 𝗠𝗘 𝗿𝗲𝘀𝗲𝗮𝗿𝗰𝗵? Our thanks to MEAction UK volunteers Catherine and Jo for giving their time & energy to speak so clearly about ME. #insidehealth #MyalgicEncephalomyelitis www.bbc.co.uk/programmes/m...

#MEAction Scotland volunteers had a busy morning at the @scottories.bsky.social Spring Party Conference. They spoke to a variety of delegates including prospective parliamentary candidates, councillors, MSPs & an MP @brianwhittle.bsky.social @suewebbermsp.bsky.social @tesswhitemsp.bsky.social

A productive first day for #MEAction Scotland's volunteers at the Scottish Liberal Democrats Spring Conference. Today we have engaged with a range of prospective candidates as well as MPs and MSPs @mpsusanmurray.bsky.social @cajardinemp.bsky.social and @jamiegreeneuk.bsky.social#MEAction#MyalgicE

Only 3 days left! 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

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...#pwME #MyalgicEncephalomyelitis

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#MyalgicE #HealthEquality

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

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

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

Last autumn, #MEAction Scotland went to the Scottish Liberal Democrat Party Conference & spoke to journalist, Justin Bowie of @thecourieruk. We then put Justin in touch with our supporters. www.thecourier.co.uk/fp/politics/...#MEAction #MyalgicEncephalomyelitis

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

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.