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A ‘crash’ is a delayed and prolonged worsening of symptoms following even minimal activity, known as post-exertional malaise (PEM), a hallmark feature of #MECFS. This can sometimes lead to a relapse and a long term reduction in a person’s energy limits. Image - NICE guideline

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Adam @abrokenbattery.bsky.social · 8h

“The time in hospital was awful for her. She had a very severe crash and could not sit and because of that she was brought home lying down in an ambulance.” 9 year old Annabelle’s mum talking about her #MECFS which she developed following Covid. #LongCovid

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Adam @abrokenbattery.bsky.social · 11/10/2026

The 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

Definition from the NICE guideline NG206

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Adam @abrokenbattery.bsky.social · 11/10/2026

“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

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Adam @abrokenbattery.bsky.social · 10/10/2026

Thoughtful comment from a UK medical student on The #MECFS Scandal.

I’m a current medical student in the UK who as of yet knows very little about ME, but has of course seen it come up in a lot of online discourse. I’m also coincidentally very interested in pursuing either psychiatry or neurology (or a mix of both), and academia. I also have a background in neuroscience.

All of that to say, it’s upsetting to hear that bad research has very rightly led to a breakdown in trust between patients with ME and doctors, has in many cases made things worse and has caused untold damage to people’s lives. The worst part is being unfairly dismissed. I cannot begin to imagine how frustrated and hopeless that must make patients that feel. I’m sorry. I’ll do my part to learn more about the condition. Poor research has made things worse, but hopefully one day more rigorous research can find some treatments for ME. That’s the least patients deserve (as well as being heard).

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Adam @abrokenbattery.bsky.social · 09/10/2026

The video is in the the blog with the transcript linked to underneath the post. Here is the direct link. youtu.be/RiwX9Y0NbiQ?...

youtu.be

ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)

YouTube video by Broken Battery

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Adam @abrokenbattery.bsky.social · 09/10/2026

Sydnie 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.

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Adam @abrokenbattery.bsky.social · 08/10/2026

Note: This interview has been edited down for social media.

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Adam @abrokenbattery.bsky.social · 08/10/2026

Kieran 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

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Reposted by Adam

Alem Matthees @alemmatthees.bsky.social · 07/10/2026

The #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.

youtube.com

6: ME Recovery Song

YouTube video by MEAnalysis

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Adam @abrokenbattery.bsky.social · 07/10/2026

Highlights from ‘ME and Me' BBC Newsbeat documentary about young people with #MECFS aired in 2018 Full video (32 mins) youtu.be/XLPCuEdqIWY

youtu.be

M.E. and me | Newsbeat Documentaries

YouTube video by BBC News Entertainment

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Adam @abrokenbattery.bsky.social · 07/10/2026

This 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. www.actionforme.org.uk/wp-content/u...

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Adam @abrokenbattery.bsky.social · 07/10/2026

People 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. www.mdpi.com/2227-9032/9/...

mdpi.com

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Adam @abrokenbattery.bsky.social · 07/10/2026

“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.

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Reposted by Adam

Chloé de Canson @chloedecanson.bsky.social · 05/10/2026

Why 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.

Screenshot of the header of a published paper:

Studies in History and Philosophy of Science

Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis

Chloé de Canson

Department of of Theoretical Philosophy, University of Groningen, Oude Boteringestraat 52, Groningen, 9712 GL, the Netherlands

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Reposted by Adam

ME/CFS Science @mecfsscience.org · 06/10/2026

1) "... 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.

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Adam @abrokenbattery.bsky.social · 06/10/2026

Watch the full video (24 mins) David Tuller interview with George Monbiot: youtu.be/MaaeQ7crLz4?... George Monbiot’s recent article: www.theguardian.com/commentisfre...

youtu.be

Interview with George Monbiot about Guardian column on ME/CFS

YouTube video by David M Tuller

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Adam @abrokenbattery.bsky.social · 06/10/2026

“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.

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Adam @abrokenbattery.bsky.social · 05/10/2026

German TV report. Clip Subtitles by Fiona Hart. Full video (21 mins): Living with ME/CFS: When suddenly nothing works anymore BASIS:KIRCHE, 13 September 2026. youtu.be/vHN-8RDTrXY?...

youtu.be

Leben mit ME/CFS: Wenn plötzlich nichts mehr geht

YouTube video by BASIS:KIRCHE

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Adam @abrokenbattery.bsky.social · 05/10/2026

“I haven’t done things like showering for over a month now.” 39 year old Caroline describes the isolation of living with severe #MECFS and #POTS, spending almost 24 hours a day in bed and needing help with basic everyday activities.

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Adam @abrokenbattery.bsky.social · 04/10/2026

Glad to hear you’re making a video as well, look forward to seeing it. Feel free to give me a shout if you have any questions. I also wanted to ask you something but wasn’t able to send you a DM. Let me know if there’s another way I can get in touch.

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Adam @abrokenbattery.bsky.social · 04/10/2026

Thanks Alem, and thank you for everything you did getting the PACE trial data released, such vital work.

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Adam @abrokenbattery.bsky.social · 04/10/2026

The full #MECFS Scandal explainer: medium.com/@abrokenbatt... I wrote a follow-up blog in January: medium.com/@abrokenbatt... And George Monbiot wrote a follow-up last month: www.theguardian.com/commentisfre...

medium.com

ME/CFS Scandal Explainer

https://youtu.be/e0FNw0z3PVw

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Adam @abrokenbattery.bsky.social · 04/10/2026

My #MECFS Scandal explainer has just hit half a million views on YouTube. I remember worrying that 27 minutes was too long and nobody would watch it. I never expected it to get so many. Thank you to everyone who shared it! Here’s the trailer 👇

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Adam @abrokenbattery.bsky.social · 03/10/2026

Watch the full video (24 mins) David Tuller interview with George Monbiot: youtu.be/MaaeQ7crLz4?... George Monbiot’s recent article: www.theguardian.com/commentisfre...

youtu.be

Interview with George Monbiot about Guardian column on ME/CFS

YouTube video by David M Tuller

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Adam @abrokenbattery.bsky.social · 03/10/2026

“ME/CFS patients are deeply inconvenient.” George Monbiot on how people with #MECFS need long term support, but governments and insurers have an incentive to “brush it away” and dismiss patients leaving them “massively mistreated, maligned” and “blamed for their illness”.

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Adam @abrokenbattery.bsky.social · 02/10/2026

Watch the full video (24 mins) David Tuller interview with George Monbiot: youtu.be/MaaeQ7crLz4?... George Monbiot’s recent article: www.theguardian.com/commentisfre...

youtu.be

Interview with George Monbiot about Guardian column on ME/CFS

YouTube video by David M Tuller

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Adam @abrokenbattery.bsky.social · 02/10/2026

"This is the opposite of how science ought to work." George Monbiot on those pushing "false and dangerous" cures for #MECFS, "entrenched" in their beliefs and doubling down rather than admit the "great harm" to the lives of thousands of people.

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George Monbiot @georgemonbiot.bsky.social · 02/10/2026

@davetuller1.bsky.social, a great champion of patients, interviewed me about the massive, ongoing scandal of the neglect, abuse and mistreatment of people with ME/CFS www.youtube.com/watch?v=Maae...

youtube.com

Interview with George Monbiot about Guardian column on ME/CFS

YouTube video by David M Tuller

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Adam @abrokenbattery.bsky.social · 02/10/2026

“If we weren’t so ill, those of us with this awful disease would be shouting it from the rooftops.” Eleanor Dent describes being largely housebound with #MECFS, from difficulties getting benefits to harmful advice, and still no treatment after 24 years.

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ThereForME @thereforme.bsky.social · 01/10/2026

The Guardian has published our letter responding to George Monbiot's article about how people with ME are abandoned, dismissed and gaslighted. We point out the inadequate political attention, and call for action from the Health & Social Care Select Committee. www.theguardian.com/society/2026...

George Monbiot is right to draw attention to the “shocking social crisis playing out behind closed doors” for people living with ME. Not only is ME a devastating condition, but too often those affected are failed by the very systems meant to care for them.

The level of political attention the issue has received is nowhere close to the scale of the problem. The government’s strategy on ME, published over a year ago, lacked both substantive funding and outcome targets. Its key action for those affected by the most severe form of ME – “exploring” whether a specialised service could be commissioned – is now delayed until April 2027. We hope that, as a first step, the health and social care select committee will take up this critical issue as a matter of urgency.
Karen Hargrave and Emma Gore-Lloyd
Co-founders, ThereForME charity

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Adam @abrokenbattery.bsky.social · 01/10/2026

Watch the full video (24 mins) David Tuller interview with George Monbiot: youtu.be/MaaeQ7crLz4?... George Monbiot’s recent article: www.theguardian.com/commentisfre...

youtu.be

Interview with George Monbiot about Guardian column on ME/CFS

YouTube video by David M Tuller

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Adam @abrokenbattery.bsky.social · 01/10/2026

“I was just horrified… The most heartbreaking stories… Treatment is absolutely appalling for patients.” @georgemonbiot.bsky.social speaking to @davetuller1.bsky.social about the hundreds of messages he received from people around the world with #MECFS about their experiences of treatment.

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Adam @abrokenbattery.bsky.social · 01/10/2026

Munchausen syndrome by proxy is now known as fabricated or induced illness (FII) and is when a parent or carer is believed to be exaggerating, fabricating or causing a child’s illness. Families of children with #MECFS still face these accusations today. Highlights from The Rantzen Report (1996).

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Adam @abrokenbattery.bsky.social · 01/10/2026

Sad to hear of the death of Dame Esther Rantzen yesterday. After writing about her daughter’s ME in the 90s, she received 4,000 letters from distressed patients and their families. She described treatment resembling methods “used in mediaeval days to punish witches”.

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Adam @abrokenbattery.bsky.social · 30/09/2026

“Physically, Long COVID has absolutely just ruined my life.” “Doctors just don’t know what to do with you.” “There’s no help coming your way.” People living with #LongCovid describe how the illness has changed their lives. Highlights from a PBS NewsHour report aired in 2023.

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Adam @abrokenbattery.bsky.social · 29/09/2026

Full interview (9 mins): youtu.be/H2rRf_f2hJs George’s recent article www.theguardian.com/commentisfre...

youtu.be

LBC | Natasha Devon interview with George Monbiot

YouTube video by Broken Battery

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Adam @abrokenbattery.bsky.social · 29/09/2026

“They’re the victims of this, but then they’re victimised for the sin of having this illness.” George Monbiot on why government and society as a whole need to stop gaslighting people with #MECFS and making them feel they’ve done something wrong.

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Adam @abrokenbattery.bsky.social · 28/09/2026

Full interview (9 mins): youtu.be/H2rRf_f2hJs George’s recent article www.theguardian.com/commentisfre...

youtu.be

LBC | Natasha Devon interview with George Monbiot

YouTube video by Broken Battery

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Adam @abrokenbattery.bsky.social · 28/09/2026

“We’ve had wasted decades in which huge numbers of patients have been abused, mistreated and their very horrible condition made even worse by medicine.” George Monbiot talking about the PACE trial, graded exercise therapy (GET) and CBT as treatments for #MECFS.

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Adam @abrokenbattery.bsky.social · 27/09/2026

Full interview (9 mins): youtu.be/H2rRf_f2hJs George’s recent article www.theguardian.com/commentisfre...

youtu.be

LBC | Natasha Devon interview with George Monbiot

YouTube video by Broken Battery

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Adam @abrokenbattery.bsky.social · 27/09/2026

“It has sent many people from having mild or moderate cases to severe #MECFS… it has turned people housebound, bedbound. It has completely destroyed their lives.” @georgemonbiot.bsky.social on the harm caused by graded exercise therapy (GET) for #MECFS.

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Adam @abrokenbattery.bsky.social · 26/09/2026

Full interview (9 mins): youtu.be/H2rRf_f2hJs George’s recent article www.theguardian.com/commentisfre...

youtu.be

LBC | Natasha Devon interview with George Monbiot

YouTube video by Broken Battery

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