@ashleydaltonmp.bsky.social
Your words “these must become never events”
PLEASE INTERVENE TO SAVE LIFE
Savannah has not eaten for 9 weeks. There are no NHS services for severe ME - 7 months since publication of the Delivery Plan for ME/CFS
www.meresearch.org.uk/claims-of-nh...
Getting diagnosed with endometriosis kind of felt like getting diagnosed with ME/CFS all over again. The years long diagnostic process, the lack of good treatment options, the lack of funding for research, and in the back of my mind, knowing the symptoms can get much much worse.
OK. Here's a suggestion, Dr CS.
Why don't the charities set up their own in-patient unit for people with very severe ME and show the blinkin medical establishment how it's done?
Because until you put your money and expertise where it actually matters, nothing will change.
#MEDeliveryPlan
#pwME URGENT - looking for someone ME literate who can sit with Savannah in hospital in London from 4:30pm TODAY for a few hours. Travel will be reimbursed.
Please share widely
#SaveSavannah #SevereMErgency
@tomkindlon.bsky.social @abrokenbattery.bsky.social @drelke.bsky.social
Worth catching up on if you missed this
@daltmann.bsky.social how can you get involved in the Rosetta Stone Study as a patient, is it only for people who can travel to London, or are there remote options?
#LongCovid
#ME
www.bbc.co.uk/programmes/m...
The f**** pictures, the title with CFS instead of ME, the somewhat justification of abuse and gaslighting, the 'recovery' narrative permanent bullshit, the total silence about daily life of severe...
www.theguardian.com/society/2026...
It wouldn't do to mention severe ME in articles like this.
The conceit is that it's a Victorian-era "malaise" that puts a dampener on your life periodically.
The reality for many is dark rooms, eye masks, feeding tubes and medically assisted death.
For anyone who wants to follow up on Joe Dispenza mentioned in this article, this podcast is a good place to start:
podcasts.apple.com/gb/podcast/c...
UK #ThereForME “Six months since the publication of the Final Delivery Plan for ME” The UK government policy paper was published on 22 July 2025. In a blog post #ThereForME summarise developments since then: “What progress has been made? Are there signs the plan is making a difference? Today we’re taking a whistlestop tour of the latest developments in three priority areas.” Blog | Plan | Thread
(UK) “Six months since the publication of the Final Delivery Plan for ME” blog post by by #ThereForME @thereforme.bsky.social
Links:
www.thereforme.uk/p/campaign-u...
www.gov.uk/government/p...
Screenshot from latest Science for ME weekly update
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis
Update on Savannah: They are now urgently seeking any UK doctors or hospitals willing to provide TPN and restart cyclizine. If no safe option is found, they are even considering treatment abroad.
If you have suggestions, please fill in the form
tally.so/r/81KxGO
@everydoctor.org.uk are you aware of the below situation?
A repeat of what happened to Maeve in 2021. Coroner's urgent findings in 2024 PFR completely ignored. While questions have been asked in parliament, nobody seems willing to overrule the hospital that is literally starving her to death. HELP!
I was particularly surprised by this "aim" from RCP that all of their ~40,000 members would undertake the modules by the end of 2025.
Particularly as (afaik) they have made no attempt to tell members about the modules, and no CPD points are available for completing the modules.
#MEDeliveryPlan
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??
Thanks to The Times for highlighting Savannah’s story and the critical issue that there is no specialist NHS service for very severe ME. Grateful to Ashley Dalton for our recent brief call but still waiting for progress report re ME Plan commitment to explore such a service, including treatments.
IMAGE DESCRIPTION: Flier for the 'Stronger Together' Symposium.
The ME/CFS Alliance are marking their 20th Anniversary with a symposium, “Stronger Together”, at Winchester Cathedral.
The event is set to include talks from numerous researchers, find out more: https://meassociation.org.uk/ctcf
#pwME
The first of the papers mentioned in this article has one of the most astonishing figures I've ever seen wrt ME.
www.mdpi.com/ijms/ijms-24...
How many people like this doctor are walking around thinking that ‚maybe this was what being in my mid-30s entailed: I had begun an early neurocognitive decline, and that was that‘.
#LongCovid underdiagnosis
David Tuller is always worth reading on #MEcfs
wrt this action statement in the #MEDeliveryPlan, are there any UK GPs on here who can confirm whether the RCGP has indeed been sharing and promoting the NHSE e-learning modules on ME/CFS?
Thanks!
The German Accident Insurance (Deutsche Unfallversicherung) forces people with #MECFS to undergo diagnostic tests as part of the evidence gathering process for expert opinions, tests that can be extremely harmful to the patients – my exclusive investigation @riffreporter.bsky.social is available ⬇️
FOI response shows uptake of ME/CFS e-learning from the government delivery plan:
• Intro: 371
• Community care: 101
• Severe ME: <50
From a workforce of ~188k doctors & ~423k nurses
This is the problem when training is “promoted” and not mandatory.
Thanks for everything you’re doing. I recently had an exchange over training; there is NO formal MSc in post viral conditions like MECFS and if we want properly qualified, specialist healthcare professionals for this, Long Covid, PoTS, MCAS etc, that’s what’s needed. I despair
Many thanks @lucibee.bsky.social . Could you please email the full answer to me at Tessa.munt.mp@parliament.uk.
it's beyond pitiful. less than 0.0055% of NHS doctors & nurses with basic awareness of severe ME.
This is what happens when the govt doesn't put their money where their mouth is. Just more hot air and neglect
They can't be this incompetent? This has to be intentional.
Protecting Sir Simon?
This is *pitiful*. 😞
@ashleydaltonmp.bsky.social Your department needs to try an *awful* lot harder.
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
