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??
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:
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
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
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.
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
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-...
