Nick Benton

Lost at sea: The Big Crash and the GP My last post explained how I became bedbound with ME. Here's what happened next.

Wrote about what happened immediately after I became bedbound with ME.

thepersonalme.substack.com/p/after-the-...

Germany Declares ‘National Decade’ to Solve the Mystery of Long Covid and ME/CFS Germany Declares ‘National Decade’ to Solve the Mystery of Long Covid and ME/CFS

This seems very positive. Hopefully one day we will see something like this in the UK!

rtvonline.com/english/inte...

Long Covid and ME patients 'hopeful' about Rosetta Stone study The £1.1m Rosetta Stone study hopes to make a breakthrough by comparing both conditions.

www.bbc.co.uk/news/article...

Donate to #SevereMErgency:Save Savannah from dying inside NHS hospital, organized by Sam Pearce Very Severe ME patient 23 year-old Savannah Victora-May is at … Sam Pearce needs your support for #SevereMErgency:Save Savannah from dying inside NHS hospital

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).

about it, but it will take more than the occasional article to change it. Quotas are one option.

We also need more people in these industries to openly acknowledge their class privilege. It's almost always the few working class people who made it through who are left to speak up about it.

The UK arts scene will soon be a no-go for all but the moneyed middle classes Many working-class young people attempting a career in the arts are facing harassment or bias, according to a new report

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...

But I think it would benefit from more grounded, honest communication around what it can help with and what results patients can expect.

This means you can wait years to be seen, only to have a therapist who doesn't get it and can't really help. This can be an invalidating experience.

To be clear, I'm not complaining about the treatment per se - the NHS is very resource-limited and we're lucky to have be able to access any help.

hasn't worked. When in reality there are many mental illnesses that still aren't very well understood or treated, and CBT doesn't work for everyone.

OCD is one example. It has less common, underrecognised forms that many general CBT therapists, including within the NHS, can't identify and treat

For those with more complex, entrenched, or uncommon forms of mental illness, this often isn't enough. But the way it's advertised seems to me to say, 'whatever you're going through, we can help.' Whilst well-intentioned, this can leave some patients feeling like it's their fault a treatment

🧵 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

Thank you. I'm much better now thankfully!

The Crash That Left Me Bedbound For 18 Months An experience I'd rather forget but want to share

I wrote about how my ME became very severe for 18 months in 2022.

tinyurl.com/5xh8zuux

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 🙂

Yes it is indeed crappy! So sorry you've had similar issues. I'm sure we'll return to it one day!

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

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. 🙂

YouTube video by Broken Battery BBC Inside Science - £1.1M ME/CFS and Long Covid Study

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?...

When the page went quiet Reflections on reading before and after ME

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

tinyurl.com/4rnef4s3

New to ME? Here's what to do. Things I wish I'd known earlier.

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

The day my brain shut down: my experience of ME cognitive dysfunction Exploring the nebulous symptoms I've had for five years

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.

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