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meactionscotland.bsky.social
#MEAction Scotland
@meactionscotland.bsky.social
150 followers 190 following 36 posts
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Reposted by #MEAction Scotland
inclusivenew.bsky.social
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! 🙏
September 12, 2025 at 2:43 PM
meactionscotland.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
meactionscotland.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 3:53 PM
meactionscotland.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 10:53 AM
meactionscotland.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 10:56 AM
meactionscotland.bsky.social
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 scotland@meaction.net 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.
June 5, 2025 at 2:12 PM
meactionscotland.bsky.social
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.
May 30, 2025 at 2:38 PM
meactionscotland.bsky.social
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
May 17, 2025 at 5:35 PM
Reposted by #MEAction Scotland
inclusivenew.bsky.social
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.
meactionscotland.bsky.social #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.
May 16, 2025 at 5:18 PM
meactionscotland.bsky.social
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. A photo of an ME Action Scotland volunteer from behind listening to another who is sat down speaking into a microphone and holding a clipboard. The person speaking in the background is in soft focus and the volunteer listening in the foreground is in focus, picking out the ME Action logo on the back of their t shirt.
May 16, 2025 at 12:48 PM
meactionscotland.bsky.social
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. 🧵
A photo of ME Action Scotland volunteers standing with a Long Covid Scotland Trustee, the Founder of Inclusive New Normal, and Ben Macpherson MSP around an ME Action Scotland banner outside the Scottish Parliament. A photo of ME campaigners lying on the floor in front of the Scottish Parliament. Many are wearing red ME Action Scotland t shirts. A person in a wheelchair is filming on a phone. A photo of two ME Action Scotland volunteers standing with the Minister for Public Health and Women's Health, Jenni Minto, around an ME Action Scotland banner outside the Scottish Parliament.
May 14, 2025 at 9:13 PM
meactionscotland.bsky.social
Thanks for joining us at #MillionsMissing Scotland today
@foysolchoudhury.bsky.social and supporting the red alert for ME 🚨
foysolchoudhury.bsky.social Foysol Choudhury MBE MSP @foysolchoudhury.bsky.social · May 14
Standing with #MEAction today outside the Scottish Parliament. 🧡

Myalgic Encephalomyelitis (ME) affects thousands across Scotland, yet 8 of our 14 NHS boards currently offer no specialist or related ME/CFS service.

We must do better.

#MEAwareness #MillionsMissing @monicalennon.bsky.social
May 14, 2025 at 5:52 PM
meactionscotland.bsky.social
#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)
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.
May 9, 2025 at 3:14 PM
Reposted by #MEAction Scotland
francesryan.bsky.social
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...
When I was ill, some friends disappeared - here's what I'd like to tell them
As she publishes a new book on disability, journalist Frances Ryan shares how illness affects our friendships, and can ultimately bring us closer
inews.co.uk
May 8, 2025 at 8:32 AM
Reposted by #MEAction Scotland
tomkindlon.bsky.social
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
Image of a woman running Thousands demand withdrawal of review article recommending exercise therapy for chronic fatigue syndrome The decision to abandon a process to re-evaluate a review recommending exercise therapy for chronic fatigue syndrome (ME/CFS) has reignited calls for the article to be withdrawn. The 2019 version of the Cochrane Library review, “Exercise therapy for chronic fatigue syndrome,” has accumulated 67 citations, according to Clarivate’s Web of Science.
May 4, 2025 at 12:50 AM
Reposted by #MEAction Scotland
maryeilmicdom.bsky.social
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.
meactionscotland.bsky.social #MEAction Scotland @meactionscotland.bsky.social · May 4
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...
A red graphic with black writing that says 'Red Alert for ME. Spend the money now! Wednesday 14th May: Join ME Action Scotland in person and online. #MillionsMissing' There is an illustration of a bell ringing and the ME Action Scotland logo.
May 4, 2025 at 2:03 PM
Reposted by #MEAction Scotland
murtoz.bsky.social
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!
meactionscotland.bsky.social #MEAction Scotland @meactionscotland.bsky.social · May 4
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...
A red graphic with black writing that says 'Red Alert for ME. Spend the money now! Wednesday 14th May: Join ME Action Scotland in person and online. #MillionsMissing' There is an illustration of a bell ringing and the ME Action Scotland logo.
May 4, 2025 at 11:54 AM
meactionscotland.bsky.social
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...
A red graphic with black writing that says 'Red Alert for ME. Spend the money now! Wednesday 14th May: Join ME Action Scotland in person and online. #MillionsMissing' There is an illustration of a bell ringing and the ME Action Scotland logo.
May 4, 2025 at 10:36 AM
meactionscotland.bsky.social
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
SOS: Save our Science
People disabled by ME and Long Covid across the UK send out an SOS.  It’s time to send out our SOS signal, if we want to have funded research. May 12th, is Myalgic Encephalomyelitis Awareness Day. On ...
ow.ly
April 12, 2025 at 12:01 PM
meactionscotland.bsky.social
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
MEAction volunteers, Janet and Ann, stand either side of Prof Jack Lambert of Lyme Resource Centre outside the MEAction UK stand.
March 28, 2025 at 1:09 PM
meactionscotland.bsky.social
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
March 28, 2025 at 9:36 AM
meactionscotland.bsky.social
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
MEAction volunteers talks to two attendees at the RCPCH conference in Glasgow.
March 27, 2025 at 11:32 AM
meactionscotland.bsky.social
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
Nigel Speight, a white man with glasses wearing dark top and shirt with lanyard, talks to a woman with long dark hair and purple top at MEAction UK stand with posters lining stand behind.
March 26, 2025 at 11:51 AM
meactionscotland.bsky.social
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
Volunteers setting up stand at the RCPCH conference. Two white women, one sitting at the side of a table covered in red tablecloth with documents on and one standing behind. Walls covered in #MEAction UK posters.
March 25, 2025 at 6:03 PM
meactionscotland.bsky.social
bsky.app/profile/meac...
meactionuk.bsky.social MEAction UK @meactionuk.bsky.social · Mar 25
Preparations are underway for the MEAction UK stand at @rcpch.bsky.social conference in Glasgow. Great work by Susan Cole of @meactnet.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
Volunteers setting up stand at the RCPCH conference. Two white women, one sitting at the side of a table covered in red tablecloth with documents on and one standing behind. Walls covered in #MEAction UK posters.
March 25, 2025 at 5:45 PM