Nick Benton
nickbenton.bsky.social
Nick Benton
@nickbenton.bsky.social
Writer living with myalgic encephalomyelitis (ME) for five years.

Substack for all things ME: https://thepersonalme.substack.com/
Thank you. I'm much better now thankfully!
January 22, 2026 at 9:29 AM
Ah that sounds so frustrating Ade, really hope you get that book out there at some point! And I'll definitely have a go at the audiobooks, thanks 🙂
January 16, 2026 at 10:03 PM
Yes it is indeed crappy! So sorry you've had similar issues. I'm sure we'll return to it one day!
January 16, 2026 at 12:57 PM
Out of interest (as I noticed you're also a writer), do you find your cognitive dysfunction makes you less creative or just slower to write? I think it's both for me, but mainly slower
January 16, 2026 at 10:16 AM
Thanks Ade! Sorry to hear you're having a similar experience.

And that's really interesting because I've been thinking about trying audiobooks for a while! Maybe this is the push I needed. Really appreciate the suggestion. 🙂
January 16, 2026 at 10:14 AM
In particular, I would like to know whether the authors support encouraging patients to maintain or increase their activity through flare-ups. If so, based on my own negative experience and that of many others I've heard from, I think it risks harm. #MECFS
May 22, 2025 at 6:56 PM
the Leeds facility (which costs £3.5k per patient, per week) isn’t nearly detailed enough given the harm done through some implementations of GET/generalised exercise programmes and the resulting lack of trust between patients and clinicians.
May 22, 2025 at 6:56 PM
I lost count long ago of how many I’ve come across. It seems risky, not to mention very dismissive of patients' experiences, to promote it in this way. Talking vaguely of ‘bespoke’ programmes overseen by ‘experts’ (of which there are currently very few) and
May 22, 2025 at 6:56 PM
Thanks Karen 😊
March 4, 2025 at 4:50 PM
Thanks Carole 🙂
March 4, 2025 at 4:49 PM
Hi @georgemonbiot.bsky.social, on 17 Feb minister for public health Ashley Dalton said there are no plans to grant additional funding to the cross-gov't ME/CFS Delivery Plan, due to be published next month.

Your support in encouraging them to reverse this decision would be greatly appreciated. 🙂
February 22, 2025 at 10:19 AM
Thanks Binita! X
February 21, 2025 at 8:33 PM