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 The @scottishgov.bsky.social withdraws outdated guideline and endorses NICE. The Scottish Government has withdrawn the Scottish Good Practice Statement on ME/CFS.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