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Reposted by #MEAction Scotland

Inclusive New Normal @inclusivenew.bsky.social · 27d

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! 🙏

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#MEAction Scotland @meactionscotland.bsky.social · Aug 12

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

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#MEAction Scotland @meactionscotland.bsky.social · Aug 6

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

ow.ly

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#MEAction Scotland @meactionscotland.bsky.social · Jul 29

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

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.

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#MEAction Scotland @meactionscotland.bsky.social · Jun 18

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

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#MEAction Scotland @meactionscotland.bsky.social · Jun 5

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.

A woman wearing a red Millions Missing t-shirt. On the left side of the image, she is facing the camera. On the right side, she has her back to the camera. There is a yellow stripe across the picture with the words MEAction T-shirts written on it in black. Beneath this is a red and yellow splash graphic with the words Order Now! written on it in white.

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#MEAction Scotland @meactionscotland.bsky.social · May 30

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.

Scottish flag, white diagonal cross on blue background flying on flagpole against a blue sky. Text headline: Success for #MEAction Scotland Campaign. Scottish Government withdraws outdated guideline and endorses NICE.

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#MEAction Scotland @meactionscotland.bsky.social · May 17

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.

Blue Sunday 2025

Ideas on how to join in on Sunday 18th May 2025: Wear something blue (pyjamas count!), and/or Dig out your best cups and saucers, and/or Bake or buy your favourite cake, and/or Post a photo of your…

the-slow-lane.com

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Reposted by #MEAction Scotland

Inclusive New Normal @inclusivenew.bsky.social · May 16

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.

#MEAction Scotland @meactionscotland.bsky.social · May 16

And last, but definitely not least, a huge thanks to the attendees, speakers and contributors from within the ME community - we understand the sacrifices you make to be part of these events ❤️ #pwME #MillionsMissing

@therealmecfs.bsky.social @maryeilmicdom.bsky.social @inclusivenew.bsky.social

A photo of ME Action Scotland volunteer Jo Bruce speaks to the crowd at Millions Missing outside the Scottish Parliament. Jo is wearing a red tracksuit and holding a microphone and a piece of paper, sitting in a wheelchair. Next to her is a sign that says ME is a living death.

A photo of Sally Witcher, founder of Inclusive New Normal, speaking to the crowd at Millions Missing outside the Scottish Parliament. Sally is in a wheelchair and wearing a mask. An ME Action Scotland volunteer is holding a microphone for Sally. Next to them is two people in red ME Action t shirts sitting behind a table with a red tablecloth.

A photo of Stuart Murdoch speaking to the crowd at Millions Missing outside the Scottish Parliament. Stuart is sat down, holding a microphone and a clipboard. In the background a group of people, standing and sitting, are listening to him.

A close up of a volunteer at the Millions Missing demonstration outside the Scottish Parliament. They are looking at an ME Action badge pinned on their jacket.

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#MEAction Scotland @meactionscotland.bsky.social · May 16

You were with us @maryeilmicdom.bsky.social - your words were read and we had your view from your bed propped up next to our bed ❤️

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#MEAction Scotland @meactionscotland.bsky.social · May 16

And last, but definitely not least, a huge thanks to the attendees, speakers and contributors from within the ME community - we understand the sacrifices you make to be part of these events ❤️ #pwME #MillionsMissing

@therealmecfs.bsky.social @maryeilmicdom.bsky.social @inclusivenew.bsky.social

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#MEAction Scotland @meactionscotland.bsky.social · May 16

Thanks to @tesswhitemsp.bsky.social and Alexander Stewart MSP for joining us during #MEAwarenessWeek at #MillionsMissing Scotland 2025 and supporting our call for the urgent development of specialist support for people with ME.

A photo of Tess White MSP standing with an ME Action Scotland volunteer outside the Scottish Parliament. They are standing next to an ME Action Scotland banner and Tess White is holding a red board that says 'Red Alert for ME, specialist support is needed now' and wearing a red ME Action t shirt.

A photo of Alexander Stewart MSP standing with an ME Action Scotland volunteer outside the Scottish Parliament. They are holding a Millions Missing sign and standing next to an ME Action Scotland banner.

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#MEAction Scotland @meactionscotland.bsky.social · May 16

Thanks to @colinsmythmsp.bsky.social and @paulsweeney.bsky.social for joining us during #MEAwarenessWeek at #MillionsMissing Scotland 2025 and supporting our call for the urgent development of specialist support for people with ME. Paul Sweeney was the first MSP to speak to the crowd.

A photo of MSPs Paul Sweeney and Colin Smyth standing with an ME Action Scotland volunteer outside the Scottish Parliament around a bed that says ME is a physiological condition. The volunteer is holding a red board that says 'Red Alert for ME, specialist support is needed now' and the MSPs are holding a Millions Missing sign.

A photo of Paul Sweeney MSP speaking to the crowd at Millions Missing outside the Scottish Parliament. He is holding a microphone and a piece of paper.

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#MEAction Scotland @meactionscotland.bsky.social · May 16

Thanks to @suewebbermsp.bsky.social and Oliver Mundell for joining us during #MEAwarenessWeek at #MillionsMissing Scotland 2025 and supporting our call for the urgent development of specialist support for people with ME. Sue Webber also spoke to the crowd.

A photo of MSPs Sue Webber and Oliver Mundell standing with an ME Action Scotland volunteer outside the Scottish Parliament around a bed that says ME is a physiological condition. Sue is holding a red board that says 'Red Alert for ME, specialist support is needed now' and the volunteer is holding a Millions Missing sign and standing next to an ME Action Scotland banner.

A photo of Sue Webber MSP speaking to the crowd at Millions Missing outside the Scottish Parliament. She is holding a microphone and standing next to a sign that says 'ME is life without sound and light.'

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#MEAction Scotland @meactionscotland.bsky.social · May 16

Thanks to @michaeljmarra.bsky.social for joining us during #MEAwarenessWeek at #MillionsMissing Scotland 2025 and supporting our call for the urgent development of specialist support for people with ME.

A photo of Michael Marra MSP standing with an ME Action Scotland volunteer outside the Scottish Parliament. They are holding a red board that says 'Red Alert for ME, specialist support is needed now' and standing next to an ME Action Scotland banner.

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#MEAction Scotland @meactionscotland.bsky.social · May 16

Thanks to @benmacpherson.bsky.social for joining #MillionsMissing Scotland 2025 and supporting our call for the development of specialist support for people with ME.

Ben is a long-standing supporter of our work. He spoke to the crowd and spent time chatting with people from the community.

A photo of Ben Macpherson MSP standing with three ME Action Scotland volunteers outside the Scottish Parliament. He is holding a red board that says 'Red Alert for ME, specialist support is needed now' and behind them is an ME Action Scotland banner and a bed with a red duvet.

A photo of Ben Macpherson MSP speaking to the crowd at Millions Missing outside the Scottish Parliament. He is holding a microphone and there are people listening in the background, mostly in red ME Action t shirts.

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#MEAction Scotland @meactionscotland.bsky.social · May 16

Thanks to @cgrahamemsp.bsky.social for joining us during #MEAwarenessWeek at #MillionsMissing Scotland 2025 and supporting our call for the urgent development of specialist support for people with ME.

A photo of Christine Grahame MSP standing with an ME Action Scotland supporter outside the Scottish Parliament. They are holding a red board that says 'Red Alert for ME, specialist support is needed now' and standing next to an ME Action Scotland banner.

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#MEAction Scotland @meactionscotland.bsky.social · May 16

Thanks to @alex.scotlibdems.org.uk for joining us during #MEAwarenessWeek at #MillionsMissing Scotland 2025, speaking to the crowd and supporting our call for the urgent development of specialist support for people with ME. Alex also spoke to the crowd.

A photo of Alex Cole-Hamilton MSP shaking hands with an ME Action Scotland volunteer outside the Scottish Parliament at the Millions Missing Scotland demonstration. Another ME Action Scotland volunteer and another man who is mostly obscured are standing with them.

A photo of Alex Cole-Hamilton MSP speaking to the crowd at Millions Missing outside the Scottish Parliament. He is holding a microphone and a piece of paper and standing next to two people in red ME Action t shirts sitting behind a table with a red tablecloth. A man in an ME Association hoody is standing behind them.

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#MEAction Scotland @meactionscotland.bsky.social · May 16

Thanks to @katysclark.bsky.social for joining us during #MEAwarenessWeek at #MillionsMissing Scotland 2025 and supporting our call for the urgent development of specialist support for people with ME.

A photo of Katy Clark MSP talking to two ME Action Scotland volunteers outside the Scottish Parliament at the Millions Missing Scotland demonstration. They are all smiling.

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#MEAction Scotland @meactionscotland.bsky.social · May 16

Thanks to @foysolchoudhury.bsky.social @monicalennon.bsky.social and Brian Whittle MSP for joining us during #MEAwarenessWeek at #MillionsMissing Scotland 2025 and supporting our call for the urgent development of specialist support for people with ME. Brian Whittle also spoke to the crowd.

A photo of MSPs Brian Whittle, Foysol Choudhury and Monica Lennon standing with an ME Action Scotland volunteer outside the Scottish Parliament. They are holding a red board that says 'Red Alert for ME, specialist support is needed now' and standing next to an ME Action Scotland banner.

A photo of Brian Whittle MSP speaking to the crowd at Millions Missing outside the Scottish Parliament. He is holding a microphone and a piece of paper and standing next to two people in red ME Action t shirts sitting behind a table with a red tablecloth.

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#MEAction Scotland @meactionscotland.bsky.social · May 16

Thanks to Alexander Burnett MSP, Rachael Hamilton MSP, Alex Rowley MSP and Murdo Fraser MSP for joining us during #MEAwarenessWeek at #MillionsMissing Scotland 2025 and supporting our call for the urgent development of specialist support for people with ME.

A photo of Alexander Burnett MSP standing with an ME Action Scotland volunteer outside the Scottish Parliament. They are holding a red board that says 'Red Alert for ME, specialist support is needed now' and standing next to an ME Action Scotland banner.

A photo of Murdo Fraser MSP standing with an ME Action Scotland volunteer outside the Scottish Parliament. They are holding a red board that says 'Red Alert for ME, specialist support is needed now.'

A photo of Rachael Hamilton MSP standing with two ME Action Scotland volunteers outside the Scottish Parliament. She is holding a red board that says 'Red Alert for ME, specialist support is needed now' and standing next to an ME Action Scotland banner.

A photo of Alex Rowley MSP standing with an ME Action Scotland volunteer outside the Scottish Parliament. They are holding a red board that says 'Red Alert for ME, specialist support is needed now.'

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#MEAction Scotland @meactionscotland.bsky.social · May 16

Thanks to @jennimintomsp.bsky.social for joining us this #MEAwarenessWeek at #MillionsMissing Scotland & speaking to the crowd.

The Minister confirmed that the government is discussing with Health Boards how the allocated funding could be spent & highlighting that NICE guidance should be followed.

A photo of a crowd of people listening to Jenni Minto, Minister for Public Health and Women's Health, at the Millions Missing demonstration outside the Scottish Parliament. Jenni is speaking into a microphone and holding a phone and lanyards. People are standing and sitting to listen, they include ME Action volunteers, members of the public and MSPs. An ME Action Scotland banner can also be seen in the background.

A photo of an ME Action Scotland volunteer standing with the Minister for Public Health and Women's Health, Jenni Minto, next to an ME Action Scotland banner outside the Scottish Parliament.

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#MEAction Scotland @meactionscotland.bsky.social · May 16

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

A photo of a group of twelve people standing outside the Scottish Parliament at the Millions Missing Scotland 2025 demonstration. It includes ME Action Scotland volunteers, Stuart Murdoch and other people affected by ME, Ben Macpherson MSP, the Founder of Inclusive New Normal and a Trustee of the ME Association.

A photo of the Millions Missing Scotland rally outside the Scottish Parliament. It's a sunny day and a crowd of people are listening to Stuart Murdoch speak and clapping. Some are standing, some are in wheelchairs and some are sitting in camping chairs. Lots of people are wearing red ME Action t shirts.

A photo of a crowd of people listening to ME Action Scotland volunteer Jo Bruce speak at the Millions Missing demonstration outside the Scottish Parliament. Jo is in a wheelchair holding a piece of paper and a microphone. People are standing and sitting to listen, they include ME Action volunteers, members of the public and MSPs. An ME Action Scotland banner can also be seen in the background.

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#MEAction Scotland @meactionscotland.bsky.social · May 14

Inside the Scottish Parliament, a motion was also published today for #MEAwarenessWeek which reinforces the messages of the rally, lodged by Annie Wells MSP with our support. Watch this space for further info.

More to come once volunteers have had a chance to rest more - thanks for your patience!

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#MEAction Scotland @meactionscotland.bsky.social · May 14

The rally was covered across multiple news outlets. Big thanks go to Stuart Murdoch of the band Belle and Sebastian, for supporting with this 🙂
Article: www.thenational.scot/news/nationa...

(We will share the full list of MSPs that attended ASAP - we're still regrouping and working it out!)

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