MEAction UK

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

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.

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#MyalgicEncephalomyelitis #VerySevereME

BBC One - Reporting Scotland, News at Seven, 06/08/2025 More from the day’s top stories and communities across Scotland.

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

Home - DecodeME The world's biggest study into the causes of ME/CFS.

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

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.

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

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#MyalgicEncephalomyelitis #VerySevereME #pwME #pwLC #ChronicIllnessUK #DisabilityAdvocacy

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...

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.

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#MillionsMissing #pwME #pwLC

thebmj in white text on bright blue background.

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.

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#VerySevereME #MillionsMissing

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.

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.

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

People with ME are calling on you to fund ME research @rthonwesstreeting.bsky.social @ashleydaltonmp.bsky.social

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.

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

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

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.

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 🆘

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.

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

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

We have a small window to get ME research funded in the ME/CFS Delivery Plan. Raise your voice and join us in our S.O.S. campaign by writing to politicians and funding bodies 👇📩

ow.ly/8vxF50VFjTm

#MillionsMissing #DisabilitySOS #pwME #MECFS #LongCovid #MyalgicEncephalomyelitis #ChronicIllness

“There is a sound economic argument for spending more money on research. If just a fraction of people who are unwell with ME were able to go back to work by dint of that research, that would be a good financial outcome.”

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Prof Ponting makes a point that should be taken very seriously by @ashleydaltonmp.bsky.social,
@rthonwesstreeting.bsky.social , the DHSC, the MRC and NIHR.

They concluded that 404,000 people are living with the illness, a figure that is two thirds higher than previously thought, and many are being “completely overlooked”.

'Researchers at the University of Edinburgh analysed NHS records from 62 million people to come up with the best estimate yet of the prevalence of ME, also known as chronic fatigue syndrome (CFS).

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

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.

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.

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

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.

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

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.

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

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 ...

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

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

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

MEAction volunteers, Janet and Ann, stand either side of Prof Jack Lambert of Lyme Resource Centre outside the MEAction UK stand.

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 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.

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 volunteer talks to two attendees at the RCPCH conference in Glasgow.

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

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.

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