I'm going to do a thread 🧵 here on the questions asked in UK Parliament about the #MEDeliveryPlan specifically and ME in general since November 2025.
Due to the vagaries of threads in BSky 🙄, this might not work as planned, but let's give it a go...
Fireman Sam’s House of Flames
With the sad news that Richard Osman is leaving Richard Osman's House of Games I've been coming up with replacement shows
#replacingRichard
TW: Update on Savannah via GoFundMe: Donations have now funded legal action. Sonya Chowdhury (CEO Action for ME) has briefed a solicitor as well as Savannah’s MP. I’ve donated again.
Also includes a diary style update of her experience in hospital.
www.gofundme.com/f/severemerg...
My consultants are talking with my MP today about #SevereME provision etc because many of our situations are so desperate, there is nothing on offer, no guidance for them, no treatments for us.
@wesstreeting It HAS to change.
Funding research, and funding a specialist service will save lives.
Ok so, update after an incredibly tough week (& months!) which I’m not ready to go into.
IV fluids have been reinstated.
My consultant(s) have been really good this week, particularly one, who came in from home during sudden personal leave to see me with mum, with another consultant.
Wtf?! That’s utterly ridiculous 😡 I’m so sorry you’re being subjected to this nonsense on top of feeling so unwell. I hope your mum or someone else was there to help support and advocate for you. Let me know if there’s anything I can do 😘
Pale blue sky, with a crisp half moon
I saw the moon this morning. Have been in hospital 7weeks now almost. It’s tough.
I am forever amazed by my courage, my bravery, but it takes a lot.
47days since I breathed outside air from a window or door. 7weeks since I felt the cold on my face.
Thinking of you all. Keep going.
In case you're wondering why I'm posting monkeys - I'm taking part in Orangetober. Whenever I see something orange this October, I'm taking a photo and asking you to consider donating to Jenny's urgent neurosurgeries.
gofundme.com/savejenny
An orange monkey standing on the pavement.
I've been terrible at spotting orange things for @jennyrowbory.bsky.social 's #orangetober so figured I'd bring a friend out with me today!
ME/CFS is a devastating condition that has long been denied, dismissed, psychologised and underdiagnosed. Research is at last starting to catch up with it, with glimmers of hope for those who have been left untreated for so long.
There's a huge BUT coming ...🧵
www.theguardian.com/society/2025...
The Jolly Postman was excellent as well- loved that as a child
Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear.
#MEKills #HumanRights
I’m very youthful, and you have receding/thinning hair with a beard 😂
After 3+ years of waiting the Final Delivery Plan for ME is being released today.
Our comment 👇
This seems big.
"By studying bioenergetic characteristics of immune cells in healthy controls + #ME/#CFS & #longcovid patients, we find lymphocytes from ppl w/ME/CFS & LC exhibit elevated oxidative stress. Due 2 excess oxidative stress & consequent mitochondrial ..." 1/2 #IDSky #CanSky #MedSky
Real photo of the week
From the new Private Eye, out now.
TW: Highlights BBC Radio Bristol - Alison Larkman talks about the Mirrorbox Project which shares the voices of people with #MECFS & #LongCovid — including the severe who are not seen: bedbound, tube-fed, living in darkness.
Troopers Hill chimney reflected in the Mirror Box earlier today.
People coming out were visibly moved by Lizzy's - @hopefullizzy.bsky.social - message.
Next Ashton Court, then Glastonbury Tor.
www.iwouldbehereificould.com/mirrorbox-jo...
Yesterday was phenomenal! 160+ people came out and battled the wind to stand in a #mirrorbox to listen to my message, while looking at a place I love, & for many, that they do too.
I’ve been wiped out today from the messages & hype, it was so lovely having my family come home & tell me about it all
I have been missing from life since 2000. So many #PwME are just existing, not living.
It is a much misunderstood, cruel, often mocked illness.
#MEawarenessDay #LearnFromME #BelieveME #MyalgicE #PwME #MillionsMissing
#StillTheSaME #WorldMEday #MEawarenessWeek #MEnotCFS
Pink background with bright blue text saying: I haven’t been able to get downstairs in my own house for 2 years #SevereME
ME is one of the cruellest diseases you can possibly have. Most people think it’s as insignificant as having a cold.
#May12 #MEAwarenessDay #StillTheSaME #StillSickStillFighting #ME #MECFS #SevereME #LongCovid #EndMEcfs #MEAction #MillionsMissing #GreatestMEdicalScandal #ThereForME #BerlinBuyers
Square text box with blue background. Text in white saying Nothing new to say this #MEAwarenessDay. My brain’s wrecked, my body’s broken, and after 27 years, nothing has changed: no progress, no treatments, no cure. It's #StillTheSaME and the fury burns. Sending love & solidarity to you all. #LeftToRot
Nothing new to say this #MEAwarenessDay. My brain’s wrecked, my body’s broken, and after 27 years, nothing has changed: no progress, no treatments, no cure. It's #StillTheSaME and the fury burns. Sending love & solidarity to you all. #LeftToRot
As Lizzy illustrates so powerfully, PIP is vital for so many #pwME #pwLC. With so much concern at proposed welfare reforms, it’s been good to start work with @joplatt.bsky.social and @actionforme.bsky.social to better understand issues, and how to mitigate, with joint APPG ME/LC meeting next week.
So delighted that all 72 LibDem MPs signed this letter to @rthonwesstreeting.bsky.social @ashleydaltonmp.bsky.social asking the govt to back the ME/CFS Delivery Plan with the resources it deserves. May this be a huge encouragement to the ME community and the start of meaningful change. #WorldMEDay
This World ME day, things need to change.
Today is #WorldMEDay. In this blog, shared on our patient safety platform the hub earlier this year, @thereforme.bsky.social look at the barriers that impact access to NHS care for people with ME and Long Covid. www.pslhub.org/learn/improv... #MEAwarenessDay
On #WorldMEDay the UK ME community faces a twofold threat: the loss of critical welfare benefits, and a lack of meaningful treatments to pave their way back to work.
This must change.
We’re asking the government to back the new ME Delivery Plan with the resources it deserves.
