@abrokenbattery.bsky.social
Severe ME patient currently on a 10% battery, the gas goes out more than I do. I also compile ME/CFS Awareness videos.
@abrokenbattery.bsky.socialClip subtitles by Fiona Hart.
Full video - Long Covid: Annabelle battles ME/CFS (17 mins)
www.kika.de/story-time/v...
@abrokenbattery.bsky.socialThe worsening of symptoms after minimal activity is called Post-exertional malaise, and is a hallmark feature of #MECFS. In some cases it can lead to a relapse and a long term reduction in a person's energy limits.
Definition from the NICE guideline NG206
@abrokenbattery.bsky.social“I can’t even get dressed by myself anymore or press buttons or things like that.”
9 year old Annabelle describes the impact of #MECFS which she developed following Covid, and how exertion can make her symptoms worse. #LongCovid
@davetuller1.bsky.socialReposted by @abrokenbattery.bsky.socialWTF, Springer Nature? Removing offensive language about patients being "combative" and "reproachful" is not enough. You need to explain why the language was there in the first place. virology.ws/2026/10/10/t...
@abrokenbattery.bsky.socialThoughtful comment from a UK medical student on The #MECFS Scandal.
@abrokenbattery.bsky.socialThe video is in the the blog with the transcript linked to underneath the post.
Here is the direct link.
@abrokenbattery.bsky.socialFull interview ITV This Morning (8 mins):
youtu.be/o_1Jkkx5M80
@abrokenbattery.bsky.socialSydnie Wrigley’s 5 year old daughter Sienna called 999 when her mum collapsed at home because of Postural Orthostatic Tachycardia Syndrome (PoTS), a condition affecting the autonomic nervous system that can cause dizziness and fainting.
@abrokenbattery.bsky.socialNote: This interview has been edited down for social media.
@abrokenbattery.bsky.socialFull interview Chloe Norman talks with Kieran Barnaville about his life with ME and Dr Charles Shepherd from the @meassociation.org.uk (36 mins)
@abrokenbattery.bsky.socialKieran developed severe ME at 13 after glandular fever. He spent years bedbound, and unable to speak. Now 23, he’s working full-time. When asked how he improved, he said it was care from his family, advice from the ME community and possibly a bit of luck. #MECFS
@alemmatthees.bsky.socialReposted by @abrokenbattery.bsky.socialThe #PACEtrial recovery song by the late Graham McPhee uploaded to Youtube around 2014, which along with his more serious videos on the same channel, was used to argue that he was part of an organised campaign of harassment when he submitted a FOIA request for the fitness data from the PACE trial.
@abrokenbattery.bsky.socialHighlights from ‘ME and Me' BBC Newsbeat documentary about young people with #MECFS aired in 2018
Full video (32 mins)
youtu.be/XLPCuEdqIWY
@abrokenbattery.bsky.socialThis is still happening. A 2026 Severe ME Inquiry found patients are still facing delays in nutrition and being misdiagnosed with eating disorders. And that’s despite a Prevention of Future Deaths report in 2024.
@abrokenbattery.bsky.socialPeople with severe #MECFS can struggle to eat or drink because of difficulty swallowing, gastrointestinal problems, or simply being too debilitated. Some patients require tube feeding, but it is often delayed until it becomes life threatening.
@abrokenbattery.bsky.social“You’re fighting the illness, but then you’re fighting every health professional.”
Hannah was struggling to digest food and losing weight, but healthcare professionals thought she had an eating disorder. 8 years later, this is still happening to people with severe #MECFS.
@chloedecanson.bsky.socialReposted by @abrokenbattery.bsky.socialWhy do people with ME claim to know more about the medical aspects of their disease than their doctors? Because the mechanisms that usually ensure doctors' knowledge fail in the case of ME, and sick people have created mechanisms of knowledge production and dissemination to pick up the slack.
@mecfsscience.orgReposted by @abrokenbattery.bsky.social1) "... the medical aspects of the illness are on the whole better understood by sick people than by their doctors..." In this new paper, philosopher Chloé De Canson details how the ME/CFS community shares and produces scientific knowledge.
@abrokenbattery.bsky.socialWatch the full video (24 mins)
David Tuller interview with George Monbiot:
youtu.be/MaaeQ7crLz4?...
George Monbiot’s recent article:
www.theguardian.com/commentisfre...
@abrokenbattery.bsky.social“The harm you have done is incalculable. It’s not me who has been spreading great harm around the world. It’s you, mate.”
George Monbiot on being accused by Prof Michael Sharpe of “spreading” #LongCovid by writing about it and why he started writing about the #MECFS scandal.
