Thanks Sarah, I also really hope everyone with severe and very severe ME will one day get to where I am now.
It was mostly my Auntie who helped feed me, as she helped a lot with my care. I'm supporting myself through savings and freelance writing.
Been very busy, so I am posting this late, but I shared my story of very severe ME with the Manchester Evening News for Long Covid Awareness Day.
www.manchestereveningnews.co.uk/news/greater...
Thanks Gary!
I’ve submitted a (not so) rapid response to a BMJ article from May 2025 promoting physical rehabilitation for ME. I’ve decided to post it on my Substack too. Let me know your thoughts!
tinyurl.com/2ewns4td
So sorry you're going through this. I hope it starts to ease off soon.
Yeah it only covers the bare minimum and as you say reads identically to articles from years ago. It is sympathetic in tone which is a plus but it would have been helpful to include some of what we do now know rather than acknowledging once again everything we don't.
'a professional’s belief that the truth resided in the numbers on paper, not in the manifestly sick person before their eyes, seemed to me the same kind of literalism that causes people to drive their cars into bodies of water because the satnav told them to.'
www.theguardian.com/society/2026...
As one of Tom's constituents, I'm so pleased about this! 😊
He and his staff have always been responsive when I've contacted them about ME. He also quoted my @thereforme.bsky.social piece about having very severe ME in a parliamentary debate in November.
So grateful to him for taking us seriously!
My new Substack post is the first in a possible series about the failures in care for people with ME and what we can do about it.
This one's about the shortcomings of framing it as psychiatric.
tinyurl.com/2f4r8sm9
aeon.co/essays/what-...
'When the metaphor of rewiring is oversold, it can create false expectations. It oversimplifies. And in doing so, it runs the risk of making people feel broken when their transformation isn’t instant or complete.'
Hey Tom, I also have a Substack where I write about ME, in case you're interested! thepersonalme.substack.com
Like James, they framed everything I did as a choice. I 'chose' not to virtually attend the meetings about my care, was 'unwilling to engage' when the doctor asked me to go downstairs and have dinner with family. All when I could hardly move or speak.
It's the same thing over and over again.
Like James, they framed everything I did as a choice. I 'chose' not to virtually attend the meetings about my care, was 'unwilling to engage' when the doctor asked me to go downstairs and have dinner with family. All when I could hardly move or speak.
It's the same thing over and over again.
'...in a context where the NHS is not equipped to provide James with any meaningful medical treatment, isn’t covering the costs of the care he needs to avoid further deterioration the very least they could do?'
So sorry to read this but so grateful to Karen for sharing it.
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
Wrote about what happened immediately after I became bedbound with ME.
thepersonalme.substack.com/p/after-the-...
This seems very positive. Hopefully one day we will see something like this in the UK!
rtvonline.com/english/inte...
A new go fund me for Savannah has been set up to cover medical costs and ME-literate nursing support. I have just donated.
www.gofundme.com/f/severemerg...
Life with severe ME is not desirable in any way. That’s why the accusations of laziness or malingering never made sense.
Constant restlessness. Mind-numbing boredom. Not leaving the house for months or years. Every day feeling like a week. And being very severe is, of course, far harder than that.
🧵 Once you’re no longer severely affected by ME, it’s easy to forget how hard it was. My symptoms still seriously affect my quality of life, but they’re nothing in comparison.
But no-one's saying they aren't very talented and hard-working, they're just pointing out the fact they had an advantage. It shouldn't be that hard to admit.
A simple 'it's a problem and we need to do more about it' is all anyone really wants them to say. Instead, many take any question about class as a personal attack (not helped by the use of the term 'nepo baby' tbf).
