I fear longform articles tackling the history of IACCs (long covid, ME) and the role of psychosocial factors, like the one in Wired, have become a rite of passage for writers to show they have substance.
Nick Benton
@nickbenton.bsky.social
Writer living with myalgic encephalomyelitis (ME) for five years. Substack for all things ME: https://thepersonalme.substack.com/ I'm not on here much. For enquiries email nicholasbenton1997@gmail.com
I've posted my first critique of Wired's controversial article about Long Covid. tinyurl.com/ye2bbw7a
What Wired got wrong #1: bias and a mismatched ending
Cherry picking, misrepresentation, and PACE (again)
tinyurl.com
You may have noticed there's a new PM in town! Today's post from our co-founder @GoreLloyd on our #ThereForME blog outlines a problem his government will inherit when it comes to ME. Houston, we have a data problem. Link in next post 👇
I'm going to write a couple of blogs about the controversial Wired article from last month. This is the first, focusing on where it improves upon similar pieces that have come before. tinyurl.com/bdetcr29
What the Wired article got right
Taking the positives from an otherwise flawed piece
tinyurl.com
The U.K.’s plan for ME has failed us. Members of parliament must step up. “No ring-fenced research funding. No care pathway for the very severe. Hospitalized patients still at risk of malnutrition.” Important article by @nickbenton.bsky.social thesicktimes.org/2026/06/19/t...
The U.K.’s plan for ME has failed us. Members of parliament must step up. - The Sick Times
No ring-fenced research funding. No care pathway for the very severe. Hospitalized patients still at risk of malnutrition. What has the delivery plan really changed for people with myalgic encephalomy...
thesicktimes.org
Today @thesicktimes.org: Nearly one year after the U.K. published its final delivery plan for myalgic encephalomyelitis, it's failed to actually improve conditions for people with ME, argues @nickbenton.bsky.social. thesicktimes.org/2026/06/19/t...
The U.K.’s plan for ME has failed us. Members of parliament must step up. - The Sick Times
No ring-fenced research funding. No care pathway for the very severe. Hospitalized patients still at risk of malnutrition. What has the delivery plan really changed for people with myalgic encephalomy...
thesicktimes.org
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...
The mystery illness that left a 25-year-old man bedbound
Nick Benton, from Stockport, first became unwell in December 2020 during the Covid-19 pandemic
manchestereveningnews.co.uk
I wrote about how having good friends helped me through the worst of my ME 👇 tinyurl.com/49aypjyy
Memories of very severe ME: the value of good friends
Something that cannot be overstated
tinyurl.com
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
Problems with ME/CFS care #2: my response to 'that' BMJ piece
Bespoke, tailored, expert, specialist - easy to say, harder to define
tinyurl.com
'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...
My maddening battle with chronic fatigue syndrome: ‘On my worst days, it feels almost demonic’
The long read: I suffered with my mystery illness for decades before gaining a diagnosis. Could retraining my brain be the answer?
theguardian.com
30 min radio segment on ME on BBC Radio 4 now! www.bbc.co.uk/sounds/play/...
Radio 4 - Listen Live - BBC Sounds
Listen live to Radio 4 on BBC Sounds
bbc.co.uk
www.healthrising.org/blog/2026/02...
Precision Medicine Required For ME/CFS? A Deep Genome Dive Uncovers Many Possible Causes - Health Rising
A deep dive into the genome of ME/CFS patients points to many genetic causes of ME/CFS most of which impact energy production, the metabolism, and blood flows.
healthrising.org
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!
Action for ME@actionforme.bsky.social · 6mo agoWe're delighted to welcome @tommorrisonmp.bsky.social to our Parliamentary Champions network! Tom will also be joining the APPG on ME. We would like to thank Tom for his dedication to supporting people with ME and we look forward to working with him. Read more www.actionforme.org.uk/campaign/par...
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
The Problem With ME Care #1: Psychiatric Framings
Psychiatry looms large in NHS care for ME, especially in very severe cases. Why do so many of us resist it?
tinyurl.com
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.'
What the metaphor of ‘rewiring’ gets wrong about neuroplasticity | Aeon Essays
The metaphor of rewiring offers an ideal of engineered precision. But the brain is more like a forest than a circuit board
aeon.co
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.
ThereForME@thereforme.bsky.social · 6mo agoIn this week's #ThereForME blog our co-founder @karenlhargrave.bsky.social writes about the challenges she and her husband James have faced accessing NHS Continuing Healthcare funding. She explains why CHC funding for very severe ME is an issue that deserves attention. 🔗 in next post 👇
![A picture of a young woman and man together smiling (Karen and James). Overlaid on the picture: "When I first came across CHC funding it felt like the perfect fit [...] Their initial assessment concluded he was eligible. Yet, one year on both our CHC application and subsequent appeal have been rejected." Karen Hargrave. New #ThereForME Substack post.](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:wjbaponwuqichcsh2fiwono5/bafkreifod7x7n4p4nd4i7wresiukfpxc4sb3rewzva7r63te4vpqpioo2m)
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-...
Lost at sea: The Big Crash and the GP
My last post explained how I became bedbound with ME. Here's what happened next.
thepersonalme.substack.com
This seems very positive. Hopefully one day we will see something like this in the UK! 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
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...
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
gofundme.com
🧵 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...
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
thetimes.com
🧵 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 🙌
Tessa Munt MP 🔶@tessamunt.bsky.social · 7mo agoHonoured 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.
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
Tom Kindlon@tomkindlon.bsky.social · 7mo agoAction for ME @actionforme.bsky.social have released an Impact Statement template www.actionforme.org.uk/resource/imp... Screenshot from latest Science for ME weekly update #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
