As a full time carer for someone with very severe ME, I am starting to feel that indifference is the real killer.

@tessamunt.bsky.social for the #BlueSunday concert 'For those of you living with ME, please know you’re not forgotten. I & many others are committed to bring about the essential changes in attitude, in care & most of all...the prospects of treatment that for too many years you’ve been waiting for.'

youtu.be/6iRbQNX07zY Please watch & share this fabulous online music concert organised by Isaac Greer for Blue Sunday to help raise awareness & funds for the #MyalgicEncephalomyelitis #ME/CFS research @edinburgh-uni.bsky.social led by @cgatist.bsky.social Prof Chris Ponting youtu.be/6iRbQNX07zY

youtu.be/ohHdYWngR-g The 2026 trailer is here for Blue Sunday - The Online Concert for M.E. #pwME #MyalgicEncephalomyelitis

open.substack.com/pub/theredtr... Coming soon! Blue Sunday - The Online Concert for M.E. #MyalgicEncephalomyelitis #BlueSundayforME #pwME #MECFS

@joplatt.bsky.social asked a ? about severe & very severe Myalgic Encephalomyelitis. Please click 'no' to indicate this was not answered. 4.5 years in for my daughter & I still find it shocking that the sicker you are, the less likely you are to receive care. theyworkforyou.com/wrans/?id=20...

www.theredtreeandme.com/.../one-red-.... For me, hope is not about toxic positivity, wishful thinking, blind faith or even comfort, nor is it about denying the existence of the ‘dark leaves’. It is the resistance I see modelled by my incredibly brave & determined daughter...

The patients who will suffer are some of the most vulnerable in society, They are facing yet another year without NHS care. We're committed to advocating on their behalf - and we are very clear that this is not good enough. cc @rthonwesstreeting.bsky.social @sharonhodgsonmp.bsky.social (3/3)

This is despite a ministerial recognition in the Delivery Plan of "tragically avoidable" deaths of people with ME in England and a commitment to make these "never events". Like many patients and carers, we're asking: where on earth is the urgency? (2/3)

This week we were informed by DHSC, alongside other organisations, that DHSC and NHS England have delayed discussions on commissioning a specialised service for very severe ME until April 2027. This means yet another year without NHS care for people with very severe ME. (1/3)

theredtreeandme.com/p/red-leaves-of-solidarity?r=4yhsbn ‘Red leaves’ of solidarity from #GreenParty Thank you @nataliegreenpeer.bsky.social for listening with kindness & compassion to my 16 yo son telling you about his sister who has very severe #myalgicencephalomyelitis #LongCovid #TheRedTreeandME

5/n Today, I received their answer. This is the data table they sent me, of the number of people who have completed each of the 3 modules up to 20 January 2026:

4/n According to the Nuffield Trust, about 1.7 million people work in the NHS. This includes 188,000 doctors and around 423,000 nurses and midwives. The Royal College of Physicians has over 40,000 members. www.nuffieldtrust.org.uk/resource/the...

3/n The UK Government stated that "The Royal College of General Practitioners, the Chartered Society of Physiotherapy and the Royal College of Occupational Therapists agreed to share and promote NHS England’s e-learning modules," and that they were working with the Royal College of Nursing.

2/n The reason I asked was because the ME/CFS Delivery Plan makes some quite distinct promises (alright, "aims") about their e-learning package, including this item in their table of Agreed Actions. www.gov.uk/government/p...

About a month ago, I made a FOIA request to the NHS England Learning Hub about their new learning modules on ME/CFS... 🧵 1/n

‘Let me blunt: everything about how the NHS handles ME is broken. From the perspective of a patient and carer, everything is on fire.’

Savannah Victora-May has been in hospital for 11 months with severe ME; a dearth of specialist treatment has contributed to her situation. The Govt’s Final Delivery Plan committed to exploring a specialised service for very severe ME. *What* is happening to prevent more cases such as Savannah’s?

Brilliant news for the ME community!

Lovely working with you too @louisekenward.bsky.social and thank you for sharing.

theredtreeandme.substack.com/p/red-leaves... Huge thanks to all the ME/CFS scientists & clinicians from around the world for the messages of hope given to #TheRedTreeandME for people with ME @chestercathedral.bsky.social @cgatist.bsky.social

Available to buy now: One Red Leaf at a Time Greetings Cards. All proceeds go to our #MEcfs research @uoe-igc.bsky.social. Thank you @drjogreer.bsky.social & Dr Clare Raynor! theredtreeandme.substack.com/p/one-red-le... #oneredleafatatime

open.substack.com/pub/theredtreeandme/p/one-red-leaf-at-a-time-greetings?r=4yhsbn&utm_campaign=post&utm_medium=web&showWelcomeOnShare=true #OneRedLeafataTime #TheRedTreeandME is fundraising for research into #MyalgicEncephalomyelitis at The University of Edinburgh, led by Professor Chris Ponting.

Helping turn hope into action Excited to share more beautiful One Red Leaf at a Time artwork and powerful lived experience narratives & our JustGiving page www.justgiving.com/page/one-red... for the ME/CFS research led by Professor Chris Ponting. open.substack.com/pub/theredtr...

Here's a short happy-go-lucky 🎶 parody about the way that Robert F. Kennedy Jr. is now collapsing American healthcare - based off #PaulSimon's toe-tapping "Me and Julio Down by the Schoolyard". youtu.be/FDiXrd-R68U It's called: "Measles and Polio Down in the Schoolyard."

So excited to share these stunning 'Red Leaves and Glimmers of Gold' open.substack.com/pub/theredtr... #Oneredleafatatime #TheRedTreeandME #MyalgicEncephalomyelitis #DecodeME

The most severely affected are too sick to appear on camera - way too much exertion. They live in the shadows, in dark rooms with closed doors & are the least able to advocate for themselves. They really need strong allies campaigning for research, better care & treatment. #SevereME

Hero to #pwME Dr Nigel Speight is fundraising for @medicalaidpal.bsky.social & cycling from Lands End➡️John O'Groats "With the terrible things that are happening in Gaza & the West Bank it's difficult to think of a more worthwhile charity than MAP" Dr Speight 🔗👇 www.justgiving.com/page/arthur-...

💙 Thank you to Dr Kane for highlighting this deeply problematic mandatory training for FII. This broad model is embedded within healthcare yet is NOT backed by evidence. Capturing highly vulnerable families whom the medical system is failing. It is discriminatory & damaging. We need change.

1/3 📢 The Times (paywalled): "Third delay to ME care plan prompts backlash from patients" Full article (paywalled) 👇 www.thetimes.com/uk/healthcar... ⬇️

Further evidence of more neglect, delay, broken promises, dismissal, inaction, lack of transparency / candour. People with #MyalgicEncephalomyelitis have had decades of this already. Some have died waiting for change. #whereistheplan #Fundtheplan #brokenpromise

This is a really important and brilliantly delivered presentation from @binitakane.bsky.social. *please* watch, share, and urge your MP to get involved. We can and must make this change happen #ME/CFS #LongCovid #GreatestMedicalScandal

Thanks to @mediumwhite.bsky.social for the breakdown: bsky.app/profile/medi...

Highlights from Prof Chris Ponting’s presentation to the joint APPG on ME & Long Covid: He made clear that graded exercise is harmful, and warned that despite rising numbers, there’s still no research strategy, no effective treatments, and almost no funding. #MECFS #LongCovid

speaking with such moral clarity, exposing the deep moral and political failure of mainstream media and politics and their dehumanizing disregard in the face of what is happening in Gaza m.youtube.com/watch?v=Hk1W...

The Freedom Flotilla sailing toward Gaza is not just carrying life-saving aid. It is carrying solidarity, hope and our shared humanity.

La Freedom Flotilla s'approche de la bande de Gaza. Ne les perdons pas de vue, ils et elles ont besoin de notre soutien !

Live tracker of the Madleen freedom flotilla: freedomflotilla.org/ffc-tracker/

Check out One Red Leaf at a Time: an international art project - launched by The Red Leaf Creative Collaborative. Read more about it here: theredtreeandme.substack.com/p/one-red-le... #PwME #MyalgicEncephalomyelitis #art

Calling all chronically ill artists and allies to help @drjogreer.bsky.social with this beautiful project: 'One Red Leaf at a Time', bringing awareness about #ME Myalgic Encephalomyelitis, and the need for funding for research. More information here: theredtreeandme.substack.com/p/one-red-le...

theredtreeandme.substack.com/p/one-red-le... #oneredleafatatime #TheRedLeafCreativeCollaborative #TheRedTreeandME #MyalgicEncephalomyelitis #LongCovid #pwME

1/3. On 14 May 2025, there will be a joint meeting for Parliamentarians between the APPG on #LongCovid and the APPG on ME. A main focus will be on research, with several guest speakers. Ask your MP to attend! More details below ⬇️ #WorldMEDay

Ahead of tomorrow's ME Awareness Day/Week - I wrote a piece about beachcombing as a guest post for @drjogreer.bsky.social #pwME #MECFS #MEAWARENESSDAY #Disability #ChronicIllness - take a look at the link to next week's concert too - substack.com/home/post/p-...

#pwME #MyalgicEncephalomyelitis #bluesundayconcert2025 #meawareness @meresearchuk.bsky.social @smileformecharity.bsky.social

Really pleased to have contributed a guest post to @drjogreer.bsky.social 's The Red Tree & ME. #Disability #Beachcombing #NatureWriting #LifeWriting #RedLeaves #MECFS substack.com/home/post/p-...

#BlueSunday The Tea Party for ME Online Concert Registration / Donation here: bit.ly/bluesundayco... #pwME #BlueSundayforME #MyalgicEncephalomyelitis #MECFS @meresearchuk.bsky.social @smileformecharity.bsky.social

theredtreeandme.substack.com/p/still-a-me... Elaine O’Neill, a founder member of The Red Leaf Creative Collaborative, presents ‘Still’. This captivating piece is part of her ‘Open Door’ series & offers a glimpse into a tiny corner of her lived experience as a carer for her daughter #TheRedTreeandME