Nick Benton
@nickbenton.bsky.social
Writer living with myalgic encephalomyelitis (ME) for five years.
Substack for all things ME: https://thepersonalme.substack.com/
Substack for all things ME: https://thepersonalme.substack.com/
This seems very positive. Hopefully one day we will see something like this in the UK!
rtvonline.com/english/inte...
rtvonline.com/english/inte...
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
rtvonline.com
February 2, 2026 at 9:45 AM
This seems very positive. Hopefully one day we will see something like this in the UK!
rtvonline.com/english/inte...
rtvonline.com/english/inte...
Reposted by Nick Benton
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...
www.gofundme.com/f/severemerg...
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
www.gofundme.com
January 30, 2026 at 6:29 PM
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...
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.
January 30, 2026 at 4:58 PM
🧵 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...
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...
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
January 27, 2026 at 10:52 AM
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...
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.
January 26, 2026 at 5:23 PM
🧵 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.
Reposted by Nick Benton
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 🙌
Tessa has been an incredible advocate for the community and we look forward to working with her in this new role 🙌
Honoured to be elected as Chair of the APPG ME today. I’m grateful to have @JoPlatt.bsky.social continue to serve as an officer, facilitating continued coordination with the APPG Long COVID, and the support of @actionforme.bsky.social and @meassociation.org.uk through providing the Secretariat.
January 22, 2026 at 6:56 AM
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 🙌
Tessa has been an incredible advocate for the community and we look forward to working with her in this new role 🙌
Reposted by Nick Benton
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
"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
January 20, 2026 at 10:47 PM
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
"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
The Crash That Left Me Bedbound For 18 Months
An experience I'd rather forget but want to share
tinyurl.com
January 21, 2026 at 5:40 PM
Reposted by Nick Benton
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?...
youtu.be/eu8Lj_R-OtQ?...
BBC Inside Science - £1.1M ME/CFS and Long Covid Study
YouTube video by Broken Battery
youtu.be
January 8, 2026 at 5:20 PM
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?...
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
tinyurl.com/4rnef4s3
When the page went quiet
Reflections on reading before and after ME
tinyurl.com
January 14, 2026 at 1:49 PM
New post on my Substack exploring the difficulty I have reading for fun nowadays and how I feel about it.
tinyurl.com/4rnef4s3
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
tinyurl.com/yf5vjhuj
New to ME? Here's what to do.
Things I wish I'd known earlier.
open.substack.com
January 5, 2026 at 1:31 PM
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
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!
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!
The day my brain shut down: my experience of ME cognitive dysfunction
Exploring the nebulous symptoms I've had for five years
thepersonalme.substack.com
December 20, 2025 at 11:09 AM
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!
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!
Reposted by Nick Benton
“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.
“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.
July 23, 2025 at 5:24 AM
“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.
“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.
May 22, 2025 at 6:56 PM
🧵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.
Reposted by Nick Benton
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...
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...
Stuck at the bottom of a well
Me, very severe ME and the NHS
www.thereforme.uk
March 4, 2025 at 9:36 AM
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...
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
February 22, 2025 at 4:46 PM
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
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
February 21, 2025 at 3:58 PM
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
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