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meactionuk.bsky.social
MEAction UK
@meactionuk.bsky.social
170 followers 57 following 33 posts
Our movement fights for recognition, education, and research so that one day all people with ME (myalgic encephalomyelitis) will have access to rapid diagnosis, and compassionate, effective care.
Posts Replies Media Videos
meactionuk.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
meactionuk.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 3:52 PM
meactionuk.bsky.social
Advance notice so you can plan your energy use and pace. We believe that Decode ME will announce results around 7pm on Wednesday 6th August. They will post any news on their website. ow.ly/6TeC50Wzzhy

#DecodeME #MyalgicEncephalomyelitis #PatientAdvocacy #MEAwareness
Home - DecodeME
The world's biggest study into the causes of ME/CFS.
ow.ly
August 5, 2025 at 11:18 AM
meactionuk.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 10:55 AM
meactionuk.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 11:00 AM
meactionuk.bsky.social
We are pleased that our response to the recent opinion piece, 'Patients with severe ME/CFS need hope and expert multidisciplinary care' in the BMJ has been published but disappointed by it's commissioning & publication.

ow.ly/vsOE50VVoEx

#VerySevereME #MillionsMissing
thebmj in white text on bright blue background.
May 21, 2025 at 2:20 PM
meactionuk.bsky.social
We are honoured @swiftsandswallows.bsky.social
shared this SOS made in memory of her daughter Isla who died last year.

@rthonwesstreeting.bsky.social nwesstreeting.bsky.social, @ashleydaltonmp.bsky.social. Fund ME research to stop this happening again.

#DisabilitySOS #MillionsMissing.
May 13, 2025 at 10:57 AM
meactionuk.bsky.social
Thanks bb.ealain for making these eye-catching postcards for @rthonwesstreeting.bsky.social @ashleydaltonmp.bsky.social and the funding bodies.

Help by posting ❤️ sharing #MillionsMissing #DisabilitySOS posts today and tagging the government and funders!

Info: ow.ly/OuTu50VQOvw
Five postcards with black and white illustrations of tombstones on the front in memory of 'My Career' Lost to Long Covid. SOS in red on the back with messages to MPs and funding bodies.
May 12, 2025 at 3:11 PM
meactionuk.bsky.social
People with ME are calling on you to fund ME research @rthonwesstreeting.bsky.social @ashleydaltonmp.bsky.social
May 12, 2025 at 12:15 PM
meactionuk.bsky.social
It's #MillionsMissing!!!

Share your 🆘 on social media today & tag us
@MEActNetUK
using hashtags #DisabilitySOS & #MillionsMissing. 📣

Funding org tags👇
ow.ly/ewnZ50VCe0F
If you can't post can you ❤️ & share?

#MillionsMissing #DisabilitySOS #MyalgicEncephalomyelitis
Send your S.O.S. today! in black with #MEAction UK & Scotland and #MillionsMissing at bottom of page in white text. Photograph of a clear bottle with cork lying on a golden sandy beach lapped by waves with S.O.S. written on a large piece of white paper inside.
May 12, 2025 at 8:50 AM
meactionuk.bsky.social
Share your 🆘 on social media 12th May & tag us
@MEActNetUK
using hashtags #DisabilitySOS & #MillionsMissing. 📣

Funding org tags👇
ow.ly/ewnZ50VCe0F

If you can't post can you ❤️ & share?

#MillionsMissing #DisabilitySOS #pwME #MyalgicEncephalomyelitis
May 10, 2025 at 4:35 PM
meactionuk.bsky.social
TRIGGER WARNING
Tell MRC @rthonwesstreeting.bsky.social @ashleydaltonmp.bsky.social, the DHSC & NIHRresearch
that money invested in ME research will prevent further tragedies like the death of Sophia Mizra.👇
meaction.net/2025/04/11/s...

#MillionsMissing #DisabilitySOS #MyalgicEncephalomyelitis 🆘
An image of Sophia Mizra, a young white woman with sort dark hair wearing a blue top on a red background. Headline 'Why your S.O.S. is urgent' and #MEAction UK, Scotland & #MillionsMissing logos in black at the bottom.
May 3, 2025 at 5:40 PM
meactionuk.bsky.social
Let's make our voices heard 📣.

Send your SOS by post 📩 to the government, the DHSC, MRC and NIHR using the addresses in the link below.

Info👇
ow.ly/ehua50VJ8PA

#MillionsMissing #DisabilitySOS #pwME #MECFS #LongCovid #MyalgicEncephalomyelitis #ChronicIllness
Go large with your S.O.S at the top and #MEAction UK, Scotland & #MillionsMissing logos in white at the bottom. Image of blue lakes spelling out SOS among forests seen from above. Background is blue.
April 30, 2025 at 4:21 PM
meactionuk.bsky.social
Only 2 weeks to go to #MillionsMissing. Remember to send your 🆘 messages demanding money for ME research. Send yours by post to the DHSC, MRC & NIHR in time for 12th May 👇
ow.ly/ewnZ50VCe0F

#DisabilitySOS #pwME #MECFS #LongCovid #MyalgicEncephalomyelitis #ChronicIllness
April 28, 2025 at 4:46 PM
meactionuk.bsky.social
In @thetimes.com @cgatist.bsky.social and Gemma Samms of Edinburgh University, the authors of a study into ME highlight the need for funding for medical research into ME and new specialist services.
ME sufferers ‘feel invisible and ignored’ amid lottery of NHS care
A study found that 404,000 people are living with the illness, two thirds more than previously thought, with a 50-fold variation in diagnosis rates
ow.ly
April 22, 2025 at 11:52 AM
meactionuk.bsky.social
This #MillionsMissing we want to flood funding organisations with SOS messages - send yours by post to the government, DHSC, MRC &NIHR using info 👇
ow.ly/ewnZ50VCe0F

#MillionsMissing #DisabilitySOS #pwME #MECFS #LongCovid #MyalgicEncephalomyelitis #ChronicIllness
Image of gold coins falling from the sky against a white background. S.O.S Funde ME Research is the heading. Logos #MEAction UK & Scotland and #MillionsMissing at bottom all in gold.
April 18, 2025 at 9:51 AM
meactionuk.bsky.social
We need funding for ME research and we need it now! Help us flood the funding organisations in real life and online with our SOS messages to fund ME research.
ow.ly/656850VzBPC

#MillionsMissing #DisabilitySOS #pwME #MECFS #LongCovid #MyalgicEncephalomyelitis #disability
SOS Fund ME Research in white over a photograph of gold coins and bars. #MEAction UK and Scotland and #MillionsMissing logo at the bottom in white.
April 15, 2025 at 2:25 PM
meactionuk.bsky.social
It’s time to send out our SOS signals. Help us flood the funding organisations in real life and online with our SOS messages to fund ME research.

ow.ly/PkhW50Vzswm

#pwME #MECFS #LongCovid #MyalgicEncephalomyelitis #DisabilityJustice #disability #spoonie #chronicIllness
S.O.S on white paper in clear glass bottle with cork lying on its side on a golden sandy beach being hit by small gentle waves. Text: How will you send your S.O.S.? MillionsMissing, #MEAction UK & Scotland logos in white at bottom.
April 13, 2025 at 1:11 PM
meactionuk.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 12:11 PM
meactionuk.bsky.social
Get ready for #MillionsMissing 2025 and to send out your SOS for ME research funding. More information coming soon.

#MillionsMissing #DisabilitySOS #pwME #MECFS #LongCovid #MyalgicEncephalomyelitis #DisabilityJustice #disability #spoonie #chronicIllness
April 9, 2025 at 3:16 PM
meactionuk.bsky.social
We've joined @Scope to urge the Chancellor @hmtreasury to reconsider potential cuts to disability benefits. These will have a catastrophic impact on disabled people, pushing even more disabled households into poverty

Read the open letter to the Chancellor ow.ly/XYCf50VtMAq
April 8, 2025 at 9:27 AM
meactionuk.bsky.social
It was good to meet Prof Jack Lambert of @lymeresourcecentre.bsky.social today at the final day of the #RCPCH25 @RCPCH 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 1:07 PM
meactionuk.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
MEAction UK volunteer Helen, a white woman with light hair and glasses wearing a blue pattern top stands next to Vicky from Pans Pandas UK who has grey hair and glasses and wears a light coloured top in front of a Pans Pandas UK poster.
March 28, 2025 at 9:35 AM
meactionuk.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 volunteer talks to two attendees at the RCPCH conference in Glasgow.
March 27, 2025 at 11:31 AM
meactionuk.bsky.social
Delighted to have Nigel Speight at the @meactnet.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 11:49 AM