Rosie

Carer to my younger sister who has very severe M.E.

[Rosie @rozzybarrett]

@wesstreeting and @AshleyDalton_MP, my younger sister & best friend has very severe #MyalgicEncephalomyelitis. She was fit, healthy and loved life. Now she is bedridden, tube fed, needs 24 hr care and is suffering so much. Please #FundThePlan and be #ThereForME

[Jo Greer @DrJoGreer]

https://t.co/NMVr8XELJj ‘Red leaves’ of solidarity from @TheGreenParty Thank you @natalieben for listening with kindness and compassion to my 16 yo son telling you about his sister who has very severe #myalgicencephalomyelitis #LongCovid #TheRedTreeandME

[Billy Hanlon @bhanlon15]

BBC: "Our son loved the outdoors – invisible illness means he now can't walk or talk"

'Tomos Sleep, from Swansea, was diagnosed with severe myalgic encephalomyelitis (ME)..in 2023. The cause of ME is unknown and there is no cure'

https://t.co/NHRSbtFOMw

[Katy B @KatyBruce108]

Thinking of everyone with #ME whos doing everything they possibly can to survive while living with this horrific illness, without fanfare, glory or 'making an impact'
but with quiet dignity determination & endless courage in the face of relentless suffering

#pwME #MEAwareness

[BBC News (UK) @BBCNews]

Our son loved the outdoors – invisible illness means he now can't walk or talk https://t.co/uDE0Pf7Dak

[Katy B @KatyBruce108]

"Because there's no real treatment for (#ME) at the moment, and there isn't a group of consultants that own the disease... people with #ME are invisible." - Charlie Sleep
Very grateful to @meleriwilliams7 for her excellent reporting

#MEcfs #pwME #MEAwareness #MedTwitter

[Todd Davenport @sunsopeningband]

Nothing has degraded the quality of Long Covid research more than ignoring the existence of ME in study design.

[BBC Wales News @BBCWalesNews]

Our son loved being outdoors - now ME means he can't walk or talk https://t.co/qbcoT4gWar

[Meleri Williams @meleriwilliams7]

I’ve spent the past weeks talking to #ME patients and carers in Wales.

There is a spectrum of severity, but there are thousands in dark rooms across the country, unable to walk or talk.

Tomos is one of them.

Watch/listen/read on BBC Wales news today ⬇️ https://t.co/OHa7mcE2rp

[#ThereForME @ThereForME_UK]

December 6th. Thank you for being #ThereForME, Pauline White!

Nominated by the Barretts @rozzybarrett ✨

[#ThereForME @ThereForME_UK]

Today's guest blog is from @rozzybarrett, who writes about her sister Alice's experiences.

Rosie outlines the challenges people with v. severe ME face navigating sensory sensitivities, at home and in hospital - and the creativity & flexibility needed to provide safe care.

[Rosanna Wregor @Anonetal123]

@thegodofpleasur @Channel4News Absolutely needed. Would also like to know why on earth the new president of the Society of Occupation Medicine is a psychiatrist who works at Maudsley with Simon Wessely?! #pwME #decodeME #ThereforME #MyalgicEncephalomyelitis and #GreatestMedicalScandal

[ME Association @MEAssociation]

Petition to the UK Government: Provide more funding for further biomedical research and education on CFS/ME 

Please sign this petition calling on the UK Government to provide more funding for biomedical research into, and education on, ME/CFS. 

https://t.co/yFn4b3Dxny

#pwME #MECFS #MyalgicEncephalomyelitis #Petition #OnlinePetition #AddYourSignature

[davidtuller @davidtuller1]

Another coroner in England issues "report to prevent future deaths" in case of ME-related death. https://t.co/7795wPtQMe

[Long Covid Advocacy 💙 @LongCovidAdvoc]

ME Delivery Plan is out & #pwME are let down again.

"Exploration of a specialised service for very severe ME” and Ashley Dalton... After three years of research and consultation, you have to wonder how much further exploration is needed"

https://t.co/NMLudRbpyk

[Katy B @KatyBruce108]

#pwME failed, yet again
Grateful to everyone who worked so hard, often to their own detriment, to try to make this plan as impactful as possible
Many of us would be protesting loudly about this 'plan without any actual plan' now if we possibly could
https://t.co/xuCUE1GGbq

[Jo Greer @DrJoGreer]

@tessamunt Thank you @tessamunt for your solidarity and advocacy for people with ME and their families. This plan is a start but does nothing to prevent future deaths from #MyalgicEncephalomyelitis

[Karen Hargrave @karenlhargrave.🦋.social @KarenLHargrave]

The Final Delivery Plan for ME/CFS has been released today.

The full report was shared with some organisations and media outlets late yesterday. We’re waiting for it to go online.

A short 🧵with some thoughts…

(1/)

[Oonagh Cousins @oonagh_cousins]

The ME/CFS Final Delivery Plan is out. As expected, it doesn’t deliver.

Karen breaks down the big gaps, small wins, and what comes next. 👇🏻

It's deeply disappointing, but this is not the end. @ThereForME_UK will keep fighting for action, not words.