iiinova — where your digital self keeps evolving

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

“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

"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

“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

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

“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

“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

“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

Symptoms are “horrible” and severe cases are a “living nightmare.” @georgemonbiot.bsky.social speaks to @natashadevon.bsky.social on LBC about ME/CFS, its long history of being dismissed and psychologised, and the role of governments and insurers.

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Frances Ryan @francesryan.bsky.social · 24/09/2026

As I lay in bed with PEM, always grateful to my colleague @georgemonbiot.bsky.social for helping bring M.E. into mainstream attention. The way people with M.E. are ignored and actively harmed by medics who have been trusted to help them is a hidden scandal. www.theguardian.com/commentisfre...

theguardian.com

Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot

Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot

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Lucibee @lucibee.bsky.social · 24/09/2026

If folks need an impression of how dismal things are wrt treatment of ME and LC in the NHS, you just need to look at the services stocktake that was done in January 2025. There was "no data" for ME/CFS clinic referrals.

Annex 1 - Data Dashboard - Long Covid ME/CFS Stock take December 2024.

Highlighted box shows that there is NO DATA for total referrals to ME/CFS clinics for the period examined in the stocktake.

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Natasha Devon @natashadevon.bsky.social · 24/09/2026

George will be coming on my show this weekend to discuss this very important article.

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Elke Hausmann @drelke.bsky.social · 24/09/2026

Thank you @georgemonbiot.bsky.social for an article that really gets to the heart of what is going for people with #ME and #LongCovid and how we are being treated, by the #NHS, by politics, by the media (with notable exceptions in all areas) 1/3 www.theguardian.com/commentisfre...

To find out what this neglect looks like in practice, this week I put out a call on Bluesky asking people with ME/CFS about their recent experiences of treatment. I was immediately inundated with horrifying testimonies. "I've just been completely abandoned"; "a 10-year waiting list for treatment"; "we've given up seeking medical support"; "stuck in limbo";
"I just felt utterly unheard, invalidated".
• I've
been sent hundreds of shocking and heart-rending accounts.

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Adam @abrokenbattery.bsky.social · 24/09/2026

Essential reading. New Guardian article from George Monbiot. 'Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed.'

Of course, as there is no effective treatment, it’s a difficult situation for doctors as well as patients. But even worse than no solutions is false solutions, and a dangerous, gaslighting, even punitive approach to a terrible disease.

Across the decades, millions of people have been neglected, dismissed and mistreated, and still it goes on. We need to ask why so many patients have been abandoned, why discredited and dangerous treatments continue to be prescribed and why ignorance and neglect still dominate, in the health system and beyond. In other words, there has seldom been a stronger case for a public inquiry.

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George Monbiot @georgemonbiot.bsky.social · 24/09/2026

With great thanks to the hundreds of people who gave me their testimonies. If I hadn't said "stop" after a few hours, it might have been thousands. The sheer scale of this scandal is hard to get your head around. 2/2

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George Monbiot @georgemonbiot.bsky.social · 24/09/2026

Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2 www.theguardian.com/commentisfre...

theguardian.com

Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot

Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot

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Adam @abrokenbattery.bsky.social · 23/09/2026

Prof Simon Carding on BBC Radio Norfolk yesterday discussing DISCOVER-ME, a €7.6 million international ME/CFS research project. His team in Norfolk, along with more than 20 institutions across Europe and Canada, are investigating the biological mechanisms of the disease.

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George Monbiot @georgemonbiot.bsky.social · 22/09/2026

Sorry not to be reply to everyone who responded to my info request about #ME/CFS treatment y'day. Totally overwhelmed by utterly horrific stories. Now busy pulling it all together. And starting to see that there's a whole other story to be written (one day) about capital and chronic conditions. 1/2

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George Monbiot @georgemonbiot.bsky.social · 21/09/2026

Thanks so much everyone for a massive response. I've now had as many emails as I can cope with, so no more please - thank you. They paint a really grim and heatbreaking picture. The neglect and abuse of patients goes on and on. I hope to try to do the issue justice. #ME/CFS

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George Monbiot @georgemonbiot.bsky.social · 21/09/2026

Intending to write another column about the treatment of #ME/CFS patients this week, pegged to new research findings on the biological basis. My question for sufferers: Are any of you still being offered inappropriate (psych/GET etc) "treatments"? Please email george at monbiot dot info. Thanks.

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John Peters @johnthejack.bsky.social · 18/09/2026

Alem is a genuine, absolute hero. He got the PACE trial data released and he paid the price. His health had a terrible downturn. I hope everyone will follow him. #MEcfs #LongCovid

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Adam @abrokenbattery.bsky.social · 18/09/2026

"It turned out the study was full of holes." Highlights Dutch insurance physician Jim Faas discussing the problems with the £5M PACE trial for #MECFS on Dutch TV in 2017.

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Alem Matthees @alemmatthees.bsky.social · 17/09/2026

Bluesky is not properly showing me all my replies I posted to @tomkindlon.bsky.social about #Pacing for #MECFS so I am creating a new thread and tagging him here. 🧵👇

bsky.app

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Alem Matthees @alemmatthees.bsky.social · 17/09/2026

I am going to have a go at social media. I do not know if it will be successful or if anyone will be interested. I would rather avoid the topic of #MECFS and focus on other interests, but it continues to destroy my life and if I can help raise awareness then perhaps the suffering is not for nothing.

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Adam @abrokenbattery.bsky.social · 17/09/2026

"In just my mind, my body felt like it was dying." Emma Donohoe talking about having Severe ME at 19, bed bound 90% of the time, unable to eat without symptoms, unable to think straight or even remember the names of friends. #MECFS

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Adam @abrokenbattery.bsky.social · 16/09/2026

Having the reality of your illness denied “is almost as bad as the actual physical symptoms themselves.” Ed Yong, speaking about #LongCovid patients being disbelieved and dismissed, and how gender and racial bias affect their care.

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Adam @abrokenbattery.bsky.social · 15/09/2026

“I had to drop out as I got more and more ill.” John Kieboom talking about how he became bedridden following the exercise therapy he was prescribed for #MECFS. Dutch TV report following the release of the PACE trial data in 2017. #MECFSScandal

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Adam @abrokenbattery.bsky.social · 14/09/2026

People with #MECFS have an abnormal response to exertion. Even trivial activity can cause a worsening of symptoms that can last for weeks or even months. Sophie has severe ME & is 3 weeks into a crash. She is highly sensitive to light & sound & more reliant on her partner.

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Adam @abrokenbattery.bsky.social · 13/09/2026

“Imagine you had the flu and the worst hangover of your life at the same time.” Emma Donohoe describing her experience of ME. She developed post-viral fatigue following glandular fever and says while pushing herself it eventually developed into ME. #MECFS

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Adam @abrokenbattery.bsky.social · 11/09/2026

Today marks 25 years since 9/11. 8 months after the attack, psychiatrist Simon Wessely argued that illness reported around Ground Zero was being wrongly attributed to environmental toxins, suggesting “World Trade Centre Syndrome” was driven by social and psychological factors.

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

“There’s still a real lack of understanding in the medical profession… people tend to fall between lots of cracks.” Iona Fabian, speaking to BBC South Today in 2018, describing the lack of understanding and support faced by people with #MECFS. Very little has changed.

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

TW: German TV report from August about the Gaberdil family, whose daughter, severely ill with #MECFS, was admitted to a psychiatric ward against her parents’ wishes after her illness was wrongly treated as Munchausen syndrome by proxy. They have not seen her since December.

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Tom Kindlon @tomkindlon.bsky.social · 09/09/2026

10 years today, after a David vs Goliath FOI legal battle that damaged Alem Mathees, White et al were forced to release data from PACETrial (that cost UK taxpayers £5M) showing graded exercise therapy & CBT didn’t lead to an increased recovery rate for CFS. Please remind the world #MEcfs #PwME #CFS

Rethinking the treatment of chronic fatigue syndrome-a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT
Carolyn E Wilshire 1 , Tom Kindlon 2 , Robert Courtney 3 , Alem Matthees 4 , David Tuller 5 , Keith Geraghty 6 , Bruce Levin 7
Affiliations Expand

PMID: 29562932 PMCID: PMC5863477 DOI: 10.1186/s40359-018-0218-3

Abstract

Background: The PACE trial was a well-powered randomised trial designed to examine the efficacy of graded exercise therapy (GET) and cognitive behavioural therapy (CBT) for chronic fatigue syndrome. Reports concluded that both treatments were moderately effective, each leading to recovery in over a fifth of patients. However, the reported analyses did not consistently follow the procedures set out in the published protocol, and it is unclear whether the conclusions are fully justified by the evidence.

Methods: Here, we present results based on the original protocol-specified procedures. Data from a recent Freedom of Information request enabled us to closely approximate these procedures. We also evaluate the conclusions from the trial as a whole.

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Adam @abrokenbattery.bsky.social · 08/09/2026

#MECFS and #LongCovid often means people miss out on places that matter. The Mirror Box brings their voices back into those spaces. This weekend it will be at the Royal Opera House, London, 12–13 Sept 2026. Listen to the recording & send a postcard back. www.iwouldbehereificould.com/message/the-...

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Adam @abrokenbattery.bsky.social · 08/09/2026

“I got something like the flu and it never went away… you get to about 12 o’clock and the day would finish.” Michael Crawford describes his experience of living with ME on Loose Women in 2016. #MECFS

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Adam @abrokenbattery.bsky.social · 07/09/2026

“It’s like Groundhog Day… People need service delivery and action now… We need some respect.” Jane Ormerod of Long Covid Scotland gave evidence to both the Scottish Parliament Long Covid inquiry and the UK Covid Inquiry, and says many of the same issues still remain in Sept 2026.

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Adam @abrokenbattery.bsky.social · 06/09/2026

“For children, for both Long Covid and ME and CFS and Lyme, the situation remains dire. There are not really any services.” Stuart McIver, Long Covid Scotland, giving evidence to the Scottish Parliament. Sept 2026. #MECFS #LongCovid

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Adam @abrokenbattery.bsky.social · 05/09/2026

“My daughter was told to exercise and ended up in a wheelchair... For GPs not to be aware of the harm that exercise can do is hugely damaging.” Janet Sylvester (MEAction Scotland), speaking about her daughter Emma, who has ME, while giving evidence to the Scottish Parliament. Sept 2026.

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Adam @abrokenbattery.bsky.social · 04/09/2026

“It’s really hard to deal with knowing that people don’t believe that you’re ill.” Kate Stanforth talking about living with ME and the disbelief she faced from both the public and doctors in 2013. #MECFS

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Adam @abrokenbattery.bsky.social · 03/09/2026

Today’s Times reports on a study claiming a “deep connection” across ME/CFS, Long Covid, PTSD, MS and rheumatoid arthritis. Worth reading Professor Chris Ponting’s concerns about the study in his expert comment to the Science Media Centre.

Screenshot of Chris Ponting’s expert reaction

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Adam @abrokenbattery.bsky.social · 02/09/2026

“This is certainly the most extraordinary royal honour I’ve presented in all those years. So I’m quite moved by it. I found it quite shocking.” Amsterdam mayor Femke Halsema after honouring Severe ME patient and advocate @anilvanderzee.bsky.social as a Knight in the Order of Orange-Nassau.

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Adam @abrokenbattery.bsky.social · 01/09/2026

Karen Gordon Update Sign the petition www.change.org/p/save-karen...

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Adam @abrokenbattery.bsky.social · 31/08/2026

In 2010 people with #MECFS were banned from donating blood in the UK. The reason given was concern that donation could trigger a relapse. ITV West Country report from the time.

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Adam @abrokenbattery.bsky.social · 30/08/2026

“Every aspect of living is impossible because it just aggravates the symptoms and makes you even more ill.” Interview with @naomiwhitt.bsky.social, describing life with Severe ME when she was unable to move and even the smallest sensory input could cause lasting deterioration. #MECFS

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ME/CFS Science @mecfsscience.org · 30/08/2026

1) 🇳🇱 In the Netherlands, ME/CFS patient and advocate Anil Van Der Zee was appointed Knight in the Order of Orange-Nassau. It's an recognition of his outstanding contribution to society, a very high honour.

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Adam @abrokenbattery.bsky.social · 29/08/2026

“Many times I thought Michelle wouldn’t be alive in the morning.” Michelle Cowan developed ME at 15 and was bedbound for 12 years. She arranged for her parents and carers to be recognised for their support on UTV’s People Like Us in 2014. #MECFS

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