blogs.ed.ac.uk/enlightened/...

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

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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?

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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)

Red Leaves of Solidarity Long Covid Awareness month landed at a time when the UK Covid-19 Inquiry is laying bare just how little attention was given to the long- term consequences of Covid infection for children and adults.

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

Concerning that the trust have issued a misleading statement about Tessa's position. 'We welcome MP Munt’s call for more support for patients living with severe ME, including care facilities that are better suited to non-medical care and rehabilitation.' Non medical care and rehabilitation??

"All you need is love. But a little chocolate now and then doesn't hurt." Charles M. Schulz Huge thanks to Jo and Rob at The Chocolate Shop for partnering with The Red Tree and ME to help raise awareness of the ME/CFS research led by Professor Chris Ponting at The University of Edinburgh and...

www.theredtreeandme.com/p/all-you-ne...

Yes - me too. Well done and thank you so much for shining a light on this though.

Exactly - and to make things worse, we can guess that many of even these pitiful numbers are actually patients, advocates, researchers, etc. with access.

Table shows the numbers completing each module, split by type of email account. An asterisk indicates there were 5 or fewer. Module 1: An introduction to ME/CFS = 8 (.gov.uk), 51 (.ac.uk), 227 (.nhs), 85 (other). Module 2: ME/CFS: guidance for community-based healthcare practitioners = 8 (.ac.uk), 74 (.nhs), 19 (other). Module 3: Managing severe ME/CFS = * (.gov.uk), 7 (.ac.uk), 33 (.nhs), * (other).

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:

The NHS workforce in numbers Facts on staffing and staff shortages in England.

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...

Extract from the UK Government's ME/CFS Delivery Plan. Attitudes and education. Action: DHSC will ask relevant stakeholders to: a) consider developing a shared learning resource on ME/CFS, which could be held in an education hub, b) request that the Medical Schools Council (MSC) encourages shared learning and the NHS England e-learning package on ME/CFS to all UK medical schools and encourages medical schools to provide undergraduates with direct patient experience, c) use its networks to raise awareness of NHS England’s e-learning module on ME/CFS. Progress: Discussed potential education hub with the Task and Finish Group - to be explored further. DHSC discussed raising awareness of NHS England’s e-learning with relevant professional bodies. 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. DHSC will continue to reach out to networks including the Royal College of Nursing to promote NHS England’s e-learning modules. NICE has added e-learning to its tools and resources page, with further modules to be added as they become available. DHSC to develop and run a public awareness initiative on ME/CFS, and signpost to e-learning and NICE guidelines as part of the initiative. Timeline and measure of success: Sharing of resources with a wider stakeholder group and a public awareness initiative (by May 2026) are expected to improve both the public and professionals’ understanding of ME/CFS. E-learning to be shared with stakeholders in July 2025. NHS England’s user statistics and feedback on DHSC-led awareness initiative to be monitored and reviewed.

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.

Extract from the ME/CFS Final Delivery Plan (UK Government, 22 July 2025). Action: The Royal College of Physicians (RCP) will ensure that its training on ME/CFS keeps pace with research and guidance in the core postgraduate training for primary and secondary care physicians. Progress: RCP will, for now, rely on NHS England’s e-learning modules, which are considered suitable by RCP. Timeline and measure of success: Aim for all RCP members to undertake the e-learning by the end of 2025. My comment: This should be easily measurable. Has it been achieved?

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...

Email sent to NHS elearning enquiries on 12 January 2026. Subject - Request for information. Dear NHSE elearning hub, I am making a freedom of information request (FOIA 2000) for the following data. In 2024/5, the NHS England elfh e-learning hub introduced 3 new modules on ME/CFS: 1. An introduction to ME/CFS (May 2024). 2. ME/CFS: guidance for community-based healthcare practitioners (January 2025). 3. Managing Severe ME/CFS (September 2025). Please can you tell me how many people have completed each module to date (from date of introduction), and what the breakdown is for logins by NHS staff (nhs.uk), and those in government (gov.uk), academic (ac.uk), and social care sectors (if available). I am happy for your response to be sent to this email address. Many thanks for your help, Lucy B

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!

This is brilliant news for the ME community. The Final Delivery Plan offers nothing but warm words for those with severe / very severe or for children & young people. My 18 yo is one of many who continues to pay the price. We are so grateful for all you are doing @tessamunt.bsky.social Thank you!

Thank you so much. #TheRedTreeandME is a huge team effort - a real privilege to be part of such a lovely team. Very grateful for the many red leaves from #ThereForME especially for all your support, advocacy & clear messaging that people with ME need an NHS that is #ThereForME.

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

Dr Sarah Annesley, Dr Audrey Ryback, Professor David Price, Dr Hayley Arron, @physiosforme.bsky.social

@batemanhornecenter.bsky.social Dr William Weir, Dr Nigel Speight, Professor Ron Davis, @janetdafoe.bsky.social Professor Bob Naviaux, Joshua Leisk, Professor Simon Carding, Professor Bhupesh Prusty @buonsenso.bsky.social Dr Asad Khan, Dr Clare Rayner, @exceedhergrasp1.bsky.social

@virusesimmunity.bsky.social @putrinolab.bsky.social @scheibenbogen.bsky.social @binitakane.bsky.social @dbkell.bsky.social @resiapretorius.bsky.social @daniellebeckman.bsky.social @danielmissailidis.bsky.social @tinakatsaros.bsky.social @weselymd.bsky.social

Red Leaves and Messages of Hope @ Chester Cathedral By Jo and Nick Greer

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

One Red Leaf at a Time Greetings Cards - Raising funds for research into Myalgic Encephalomyelitis Since so many of you have asked, greetings cards featuring images from the Red Leaf Creative Collaborative are now available to purchase.

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

Thank you so much. I'll do some research.

Understandably. I will look into this - I was not aware. I just post the blog on there and do not engage with it in any other way. I'm pretty sure I will be conflicted too (as for so many other platforms). If you have any suggestions of an ethical alternative I would be really interested.

The Red Tree and M.E. | Dr Jo Greer | Substack Finding red leaves and glimmers of hope. Click to read "The Red Tree and M.E.", by Dr Jo Greer, a Substack publication with hundreds of subscribers.

Thank you for sharing #TheRedTreeandME is a creative advocacy initiative to raise awareness of ME but also other IACCs, incl Long COVID. (My daughter has very severe ME following LC). theredtreeandme.substack.com #OneRedLeafataTime is the art project launched byThe Red Tree and ME earlier this year

One Red Leaf at a Time Greetings Cards - Raising funds for research into Myalgic Encephalomyelitis Since so many of you have asked, greetings cards featuring images from the Red Leaf Creative Collaborative are now available to purchase.

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.