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.comhttps://bsky.app/profile/nickbenton.bsky.socialhttps://bsky.app/profile/nickbenton.bsky.social/post/3mumr3jjzds2hNew Substack post is live! It's my third (and final) response to the Wired article, 'The Painful Truth About Long Covid', where I push back on its promotion of graded exercise therapy as a safe intervention. tinyurl.com/3s6t2pu7 https://tinyurl.com/3s6t2pu703 Sep 2026 15:25 +0000at://did:plc:amftn7e24fzg67cmacvake63/app.bsky.feed.post/3mumr3jjzds2hhttps://bsky.app/profile/nickbenton.bsky.social/post/3msifqqmztk2eNew Post on the Substack about the pleasure of making friends within the ME and Long Covid communities. tinyurl.com/mpjwbyrb https://tinyurl.com/mpjwbyrb07 Aug 2026 11:01 +0000at://did:plc:amftn7e24fzg67cmacvake63/app.bsky.feed.post/3msifqqmztk2ehttps://bsky.app/profile/nickbenton.bsky.social/post/3mrd2idec6c26I 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.23 Jul 2026 14:31 +0000at://did:plc:amftn7e24fzg67cmacvake63/app.bsky.feed.post/3mrd2idec6c26https://bsky.app/profile/nickbenton.bsky.social/post/3mrcx4ernyc2xI've posted my first critique of Wired's controversial article about Long Covid. tinyurl.com/ye2bbw7a https://tinyurl.com/ye2bbw7a23 Jul 2026 13:31 +0000at://did:plc:amftn7e24fzg67cmacvake63/app.bsky.feed.post/3mrcx4ernyc2xhttps://bsky.app/profile/nickbenton.bsky.social/post/3mqha7noguk23I'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 https://tinyurl.com/bdetcr2912 Jul 2026 12:59 +0000at://did:plc:amftn7e24fzg67cmacvake63/app.bsky.feed.post/3mqha7noguk23https://bsky.app/profile/nickbenton.bsky.social/post/3mhgfc7c3ec2nBeen 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. https://www.manchestereveningnews.co.uk/news/greater-manchester-news/i-dark-room-247-18-33595239.amp19 Mar 2026 16:10 +0000at://did:plc:amftn7e24fzg67cmacvake63/app.bsky.feed.post/3mhgfc7c3ec2nhttps://bsky.app/profile/nickbenton.bsky.social/post/3mhdxadxiqk2gI wrote about how having good friends helped me through the worst of my ME 👇 tinyurl.com/49aypjyy https://tinyurl.com/49aypjyy18 Mar 2026 16:54 +0000at://did:plc:amftn7e24fzg67cmacvake63/app.bsky.feed.post/3mhdxadxiqk2ghttps://bsky.app/profile/nickbenton.bsky.social/post/3mgab2fumfs2nI’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 https://tinyurl.com/2ewns4td04 Mar 2026 12:13 +0000at://did:plc:amftn7e24fzg67cmacvake63/app.bsky.feed.post/3mgab2fumfs2nhttps://bsky.app/profile/nickbenton.bsky.social/post/3mg5hzndol223'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.' https://www.theguardian.com/society/2026/feb/24/my-maddening-battle-with-chronic-fatigue-syndrome-on-my-worst-days-it-feels-almost-demonic03 Mar 2026 09:40 +0000at://did:plc:amftn7e24fzg67cmacvake63/app.bsky.feed.post/3mg5hzndol223https://bsky.app/profile/nickbenton.bsky.social/post/3mg5gcsyu6s22https://www.forbes.com/sites/omerawan/2026/03/02/long-covid---heres-what-to-know-and-the-challenges-ahead/03 Mar 2026 09:10 +0000at://did:plc:amftn7e24fzg67cmacvake63/app.bsky.feed.post/3mg5gcsyu6s22https://bsky.app/profile/nickbenton.bsky.social/post/3mfluo5oyr22m30 min radio segment on ME on BBC Radio 4 now! https://www.bbc.co.uk/sounds/play/live/bbc_radio_fourfm24 Feb 2026 09:39 +0000at://did:plc:amftn7e24fzg67cmacvake63/app.bsky.feed.post/3mfluo5oyr22mhttps://bsky.app/profile/nickbenton.bsky.social/post/3mfeghsrmrs2shttps://www.healthrising.org/blog/2026/02/15/whole-genome-chronic-fatigue-causes/21 Feb 2026 10:36 +0000at://did:plc:amftn7e24fzg67cmacvake63/app.bsky.feed.post/3mfeghsrmrs2shttps://bsky.app/profile/nickbenton.bsky.social/post/3mf7tv76hjk2kAs 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! [contains quote post or other embedded content]19 Feb 2026 14:53 +0000at://did:plc:amftn7e24fzg67cmacvake63/app.bsky.feed.post/3mf7tv76hjk2khttps://bsky.app/profile/nickbenton.bsky.social/post/3mf7ag4kqx22xhttps://www.theguardian.com/society/2026/feb/18/long-covid-symptoms-treatment19 Feb 2026 09:04 +0000at://did:plc:amftn7e24fzg67cmacvake63/app.bsky.feed.post/3mf7ag4kqx22xhttps://bsky.app/profile/nickbenton.bsky.social/post/3mf52tke5z22cMy 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 https://tinyurl.com/2f4r8sm918 Feb 2026 12:19 +0000at://did:plc:amftn7e24fzg67cmacvake63/app.bsky.feed.post/3mf52tke5z22chttps://bsky.app/profile/nickbenton.bsky.social/post/3meymvaa6xk2lhttps://aeon.co/essays/what-the-metaphor-of-rewiring-gets-wrong-about-neuroplasticity?fbclid=PAZXh0bgNhZW0CMTEAc3J0YwZhcHBfaWQMMjU2MjgxMDQwNTU4AAGnM_K2mg9M3mXw3lJwCAGrenFpPCV_mjP3qsrElgwxzNcXyoxz4sIdqIKUYgI_aem_Msh-gbKP0cG4TUHSjjeH_w '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.'16 Feb 2026 17:59 +0000at://did:plc:amftn7e24fzg67cmacvake63/app.bsky.feed.post/3meymvaa6xk2lhttps://bsky.app/profile/nickbenton.bsky.social/post/3mexoitdygs2jhttps://www.thetimes.com/uk/healthcare/article/me-nhs-hospital-chronic-fatigue-8xhb0989916 Feb 2026 08:55 +0000at://did:plc:amftn7e24fzg67cmacvake63/app.bsky.feed.post/3mexoitdygs2jhttps://bsky.app/profile/nickbenton.bsky.social/post/3meiooqeoks2u'...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. [contains quote post or other embedded content]10 Feb 2026 09:48 +0000at://did:plc:amftn7e24fzg67cmacvake63/app.bsky.feed.post/3meiooqeoks2uhttps://bsky.app/profile/nickbenton.bsky.social/post/3mdzrriirrk2gWrote about what happened immediately after I became bedbound with ME. https://thepersonalme.substack.com/p/after-the-big-crash-the-first-gp04 Feb 2026 11:34 +0000at://did:plc:amftn7e24fzg67cmacvake63/app.bsky.feed.post/3mdzrriirrk2ghttps://bsky.app/profile/nickbenton.bsky.social/post/3mduks2iiak2rThis seems very positive. Hopefully one day we will see something like this in the UK! https://rtvonline.com/english/international/27234202 Feb 2026 09:45 +0000at://did:plc:amftn7e24fzg67cmacvake63/app.bsky.feed.post/3mduks2iiak2rhttps://bsky.app/profile/nickbenton.bsky.social/post/3mdukcjqbjs2khttps://www.bbc.co.uk/news/articles/cy8pnggl7zgo02 Feb 2026 09:37 +0000at://did:plc:amftn7e24fzg67cmacvake63/app.bsky.feed.post/3mdukcjqbjs2khttps://bsky.app/profile/nickbenton.bsky.social/post/3mdnrlrcqak2v🧵 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.30 Jan 2026 16:58 +0000at://did:plc:amftn7e24fzg67cmacvake63/app.bsky.feed.post/3mdnrlrcqak2vhttps://bsky.app/profile/nickbenton.bsky.social/post/3mdfloxq7zc2shttps://www.thetimes.com/culture/art/article/the-uk-arts-scene-will-soon-be-no-go-for-all-but-the-monied-middle-classes-qb0s8m0w0?utm_source=Sailthru&utm_medium=email&utm_campaign=Daily%20briefing%20Tues%2027%20Jan%2026&utm_term=audience_BEST_OF_TIMES 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...27 Jan 2026 10:52 +0000at://did:plc:amftn7e24fzg67cmacvake63/app.bsky.feed.post/3mdfloxq7zc2s