30 min radio segment on ME on BBC Radio 4 now! www.bbc.co.uk/sounds/play/...

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.'

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.

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...

🧵 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.

www.thetimes.com/culture/art/... These articles have appeared intermittently in the British media for decades. But nothing's changed. The arts and media won't 'soon be a no-go' for the working classes, they practically already are. I'm grateful to those who speak up...

🧵 There's a gap between what NHS mental healthcare makes out it can do and what it actually can. I'm grateful it exists, but it's mostly short-term, surface-level interventions (almost always CBT-based) geared towards symptom relief, rather than addressing underlying issues.

Big congratulations to @tessamunt.bsky.social! Tessa has been an incredible advocate for the community and we look forward to working with her in this new role 🙌

ME/CFS Impact Statement template resource: "You can use this template to communicate how ME impacts you & what adjustments you need to access the services & support you are entitled to" www.actionforme.org.uk/resource/imp... Designed for UK but anyone could use it #MEcfs #PwME #CFS #SevereME

I wrote about how my ME became very severe for 18 months in 2022. tinyurl.com/5xh8zuux

BBC Radio 4 Inside Science interview with Professor @daltmann.bsky.social (8 mins) discussing the Rosetta Stone study, a £1.1m research programme funded by the @meassociation.org.uk to investigate shared immunological pathways between #MECFS and #LongCovid. youtu.be/eu8Lj_R-OtQ?...

New post on my Substack exploring the difficulty I have reading for fun nowadays and how I feel about it. tinyurl.com/4rnef4s3

Here's last week's Substack (which I forgot to post on here) about what to do if you've recently developed ME. Hope some find it helpful 🙂 tinyurl.com/yf5vjhuj

Hi! I've started a free Substack - The Personal ME - about myalgic encephalomyelitis (ME). My first post is about my cognitive dysfunction - what it feels like and why explaining it can be maddening: thepersonalme.substack.com/p/the-day-my... If you enjoy it, please subscribe!

“We didn’t even see his eyes for over a year.” “It was like dealing with someone almost in a coma.” Clip from Channel 4 News: Nick Benton (@nickbenton.bsky.social ) and his family on life with severe #MECFS — as the government finally releases its delivery plan.

🧵I find it concerning that the authors of the recent BMJ piece on treating severe ME/CFS w/ increased activity avoid mentioning the number of patients who have reported worsening through inappropriate exercise advice or explaining how they propose to prevent this in future.

Today's #ThereForME blog post is from @nickbenton.bsky.social, who has experienced some improvement from Very Severe ME. He shares his various experiences with health care and talks about the need to be #ThereForME for those too sick to advocate for themselves. www.thereforme.uk/p/stuck-at-t...

The Rest is Politics podcast posted a questions request earlier today and I asked for their take on the ME Delivery Plan not being funded. It would be great if anyone else who has the energy could ask too. This would give it a fighting chance of being included in the podcast! @thereforme.bsky.social

Dear @rthonwesstreeting.bsky.social & @ashleydaltonmp.bsky.social My name is Nick and I have ME I used to work, play football and take countryside walks. Now I cannot do any of those The Delivery Plan for ME is an opportunity to invest in our future Please #FundThePlan @thereforme.bsky.social