Thanks everyone for your birthday wishes. I had a great time with my kids in Scotland navigating around Dundee and Edinburgh in my power chair.
I'll hopefully be tweeting more again going forwards. I'm dreaming big for three new projects for the #MyalgicE community...
What's this? A furious Rap Diss track in memory of all those we've lost with a Blue Rose. Who wouldn't want to hear that guy Daniel from that podcast rapping like a man possessed? It's time to let the rage out. Coming soon.
Published in time for #MEAwarenessWeek
There are too few books that we are able to share with people to explain how it is for #pwME
Here is one. Available from all good bookshops and Amazon.
My car had to go back last week because my tremors are back with a vengeance. It's painful but I've recently acquired Moby from the wonderful @cfs_jo and after spraying the seat chrome silver I'm trying to decide on a design for the back. Preferences?
About a month ago, I made a FOIA request to the NHS England Learning Hub about their new learning modules on ME/CFS...
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ALT 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
Queen Elizabeth Hospital is still starving severe ME patient Savannah. A psychiatrist came on Thursday and asked her why she hadn't got out of bed.
A BPS clinician is likely why.
Savannah is calling on the community for help once again 👇#MEcfs#pwMEthecanary.co/uk/analysis/202…
It's with great sadness that I share the passing of Jennifer. I did not know her well but I was so grateful that she came on our podcast to share her experiences of living with ME and cancer. My thoughts are with her husband and children at this time.
I'm living in a house with two refugees, a visually impaired man, an alcoholic and a guy with mental health problems. It's a unique experience. I'm more ill than I've been with ME in a really long time but I've never felt more seen, supported or believed.
I don't have to prove myself to these guys. We're all on the bottom rung of society. But that's where the most genuine people live. We've all been through shit. There's no pretenses here. Right now I wouldn't want to be anywhere else.