Today we’re sharing an update on actions from the Final Delivery Plan and how you can help inform future insights on ME.
#ThereForME Advent Calendar - thanks for your nominations!
First of all, a huge thanks to everyone who submitted nominations for our 2025 #ThereForME advent calendar, which this year will be celebrating 24 people who have been #ThereForME as selected by you!
Nominations are now officially closed and our HQ team is hard at work reviewing your suggestions. While December is often a hard time for those living with ME, our advent calendar is giving us something to look forward to.
Action for ME’s 2025 Big Survey
Here’s a reminder that Action for ME recently launched their 2025 Big Survey. You can access it here.
Action for ME runs their Big Survey every five years, aiming to build an evidence-based picture of what life with ME is like. This year’s survey will generate insights into the real-life impact of ME - from finances and employment, to access to services, and beyond. Developed in collaboration with Durham University’s Institute for Medical Humanities, the survey will be analysed by Dr Katharine Cheston alongside Action for ME’s research team. Anonymised survey data will also be shared with Dr Audrey Ryback, at the University of Edinburgh, who will use the data to study the age of ME onset, triggers, and heritability.
There is no obligation to complete every question, and respondents can pause at any time. The survey will be open until 27 January 2026 (more information is available here).
UK and international research
Earlier this year, we collaborated with CrunchME to produce a report mapping the growing UK ecosystem working to solve ME and Long Covid. That report is now available in an insta-friendly format and it’s well worth taking a look.
It’s a busy time internationally for conferences focused on ME and Long Covid. A shoutout to Elisa on Twitter/X who spotted six research conferences taking place in October and November alone - from Canada to Portugal!
Steps forward?
Closer to home, we recently attended a meeting organised by ForwardME with the Department of Health and Social Care (DHSC) with the aim of discussing next steps in the Final Delivery Plan for ME. Karen and a few other #ThereForME volunteers presented on behalf of various ForwardME working groups which are focused on different parts of the Delivery Plan, including attitudes and education, and severe and very severe ME. Together with other ForwardME representatives, we highlighted gaps in the Delivery Plan and actions we would like to see the DHSC take to address them.
Top of our list is immediate action to address the patient safety risks facing those with very severe ME. It’s been over a year since over 200 healthcare workers, led by Dr Binita Kane, wrote to Wes Streeting highlighting patient safety concerns relating to NHS care for ME. Not only did they receive no response, but over the past year little has changed. While we continue to advocate for longer-term solutions, the need for patient safety requires urgent and immediate action.
We’re also looking forward to joining an NIHR and MRC joint showcase event on 6th November for research on post-acute infection conditions. The event is part of the Delivery Plan for ME, and aims to stimulate further research. Of course, the true indicator of its success will be not the event itself but whether it leads to much needed progress that accelerates research.
In fact, across the board, here’s your regular reminder that what really matters is not the meetings, talk and words - but whether they lead to action.
We’ll see you next week.
Thank you 🙏. It’s so disgusting that Wes Streeting never even bothered to reply to that letter- maybe he never even saw it but his aides decided to bin it first, I think that happens. I wish the contemptuous disregarding of that letter and of other serious appeals could be exposed in mainstream media. Still seems no media is interested in investigating the whole shocking history and ongoing situation. Thanks so much for persevering and keeping hope , let’s hope some research investors come up 🤞🙂
So you're quite happy to keep working with action for me despite them signing up *jeremy hunt* of all people as a "champion" for us?
And then refusing to engage with the mass outcry that followed?