iiinova — where your digital self keeps evolving

Katy B @katybrc.bsky.social · 08/10/2026

I've submitted my not so small 'idea', not sure it'll meet their criteria but we can ask All Drs & HCPs must follow the NICE guidelines for M.E Stop treating M.E as a psychological illness Stop recommending GET- under any name Take the M.E learning module small-ideas.org

small-ideas.org

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Tom Kindlon @tomkindlon.bsky.social · 07/10/2026

Recording of the 24 September 2026 ME Support webinar featuring Chris Ponting @cgatist.bsky.social is up: www.youtube.com/watch?v=UJYU... #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

THE UNIVERSITY of EDINBURGH
upport - uest Speaker nt with Chris Ponting
ME: ME/CFS & biomarker udies ME Support
Navigating ME/CFS and Long COV.

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Katy B @katybrc.bsky.social · 06/10/2026

Sharpe will never accept that he's done any harm at all, he'll no doubt defend what he's done for the rest of his life, but I do hope others hear these words, look at the evidence, learn & change how they understand #ME & #pwME who've had this incalculable harm inflicted on them

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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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Katy B @katybrc.bsky.social · 04/10/2026

How dare the BPS proponents & all those who supported them think they could do this to us. Millions of lives destroyed & incalculable suffering inflicted. #ME #pwME #MEAwareness #MedSky

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Katy B @katybrc.bsky.social · 04/10/2026

Genetics supports the idea that there are many different factors." "I do not want to raise false hopes, but I am convinced that we are on the right track, provided we get more researchers and far more funding."

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Katy B @katybrc.bsky.social · 04/10/2026

"In my view, the new study has shown us which path to follow. Previously, there were many possible paths. Now, genetics is pointing us in the right direction. I do not believe that ME will ultimately turn out to be one single disease. ⬇️

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Carole Bruce @cabruce.bsky.social · 02/10/2026

We #ME patients have been an inconvenience for decades. With relief both governments and health insurers handed us over to the Psychiatrists and they continue to remain as the bottom line for most healthcare providers.

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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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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 · 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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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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David Tuller @davetuller1.bsky.social · 02/10/2026

This interview with @georgemonbiot.bsky.social has had almost 5,000 views since I posted it yesterday: 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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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 · 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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Tom Kindlon @tomkindlon.bsky.social · 02/10/2026

Latest update from the CureME team, can be read here and covers a range of topics on current projects, recent publications and sample usage eepurl.com/QShnc4nywr #MyalgicEncephalomyelitisg #ChronicFatigueSyndrome #MEcfs #CFS #PwME

eepurl.com

Latest CureME team updates

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Katy B @katybrc.bsky.social · 02/10/2026

@davetuller1.bsky.social @georgemonbiot.bsky.social thank you both so much for all that you both continue to do for pwME Whether there's a Public Enquiry or other type of enquiry it does need to take place urgently, the longer things continue as they are the more serious the situation becomes.

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Katy B @katybrc.bsky.social · 29/09/2026

@thelancet.com how can you possibly continue to defend your support for the PACE Trial when its lead to the catastrophic harm of millions of patients with M.E? "Abandoned, dismissed & gaslighted: there is no excuse for the way #ME sufferers have been betrayed" 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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Katy B @katybrc.bsky.social · 02/10/2026

They're also clearly not willing to follow the NICE guidelines for ME & they refer to 'feedback loop' which is a 'brain retraining' term, it all sounds very much like what the BPS proponents spout.

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Katy B @katybrc.bsky.social · 02/10/2026

Thank you Tessa, whatever decision is made, it needs to happen urgently, the longer this situation continues, the worse it gets, more #pwME go from moderate to severe #ME & more people are diagnosed with ME. Something radical & proportionate to the problem is necessary in order for it to change

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Tessa Munt MP 🔶 @tessamunt.bsky.social · 02/10/2026

Thanks @thereforme.bsky.social! There must be serious review of the government’s inadequate response to #ME, with its cost to us all. Still considering best options to call for including @georgemonbiot.bsky.social proposed public inquiry, Select Committee Inquiry, a Czar or even referral to HSSIB.

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Alem Matthees @alemmatthees.bsky.social · 30/09/2026

Those with #MECFS who do *not* "look" fine are often treated like garbage too, because more ill often means more to blame. Many doctors who believe ME/CFS exists only accept a certain degree of disability, beyond that is then assumed must be due to personal issues rather than the illness itself.

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Long Covid Advocacy @longcovidadvoc.com · 27/09/2026

We spoke to Amanda Leduc for our Cripademia book club. Here she talks about the idea of complex embodiment a disability model between the social & medical models. It's particularly important for those with #LC & #ME Full 🖇️👇

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Long Covid The Answers @longcovidanswers.bsky.social · 29/09/2026

Could blood vessel damage help explain the many symptoms of #LongCOVID? Prof Resia Pretorius and Prof Doug Kell discuss their research into abnormal clots, inflammation and vascular damage, and how these changes may affect the microcirculation and oxygen delivery. #ISLCPAIS #LongCOVIDResearch

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Katy B @katybrc.bsky.social · 29/09/2026

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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Chris Ponting @cgatist.bsky.social · 29/09/2026

Rob Wust (Amsterdam) shows that #pwME and #pwLC (all with PEM) *perfectly* separate from healthy controls with respect to their muscle microvasculature radius. Lower lumen radius in ME/LC. Needs replication, but this muscle biopsy metric has high diagnostic potential. #MEcfs #PRIME26 #LongCovid

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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 · 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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Katy B @katybrc.bsky.social · 28/09/2026

It doesn't get easier, being so completely dependent on others for one's survival after losing one's health & independence. I'm endlessly grateful to family & friends but I so wish they were spared the impact of this terrible illness. 💙 #ME #pwME #GreatestMedicalScandal

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Chris Ponting @cgatist.bsky.social · 28/09/2026

The 2026 PRIME symposium kicks off with reflections from Kelly McLellan on the importance of Patient and Public Involvement in ME/CFS research. #Prime26 #pwME #mecfs

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Institute of Genetics and Cancer @uoe-igc.bsky.social · 28/09/2026

Exciting to see the official launch of the Genetic Epidemiology of ME/CFS (GEM) International Consortium at this two-day symposium. At IGC, important research into ME/CFS is being conducted by @cgatist.bsky.social, @aryback.bsky.social and Joshua Dibble who are all involved in this meeting.

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Katy B @katybrc.bsky.social · 27/09/2026

After living with ME for 40 years, for countless reasons I'm more grateful than I can express for the #ME community. #pwME are a great example of how online communities can have multiple important benefits for patients, in some cases it can literally be a life line. 💙🛟💙

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Paula Knight 🎨✒️♿ @paulaknight.bsky.social · 26/09/2026

@georgemonbiot.bsky.social was on top form tallking about ME on @natashadevon.bsky.social Packed a lot of important info in: Pace Trial, GET harms, benefit cuts, insurance etc. It was like a potted history and didn't mince words about how awful it is. Listen back! #MEcfs #MyalgicEncephalomyelitis

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Dan Wyke @danwyke.bsky.social · 27/09/2026

We need to recognise the mistreatment and neglect of people with Myalgic Encephalomyelitis as an act of political violence, perpetrated by so-called medical professionals on behalf of financial (insurance companies) and governmental (DWP) institutions...

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Long Covid Advocacy @longcovidadvoc.com · 26/09/2026

📻 Superb @georgemonbiot.bsky.social Interview on LBC with Natasha Devon. "A long & vicious history in this country of dismissing predominantly female diseases & calling them hysterical." 🔥 Thank you George & Natasha 🙏

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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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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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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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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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George Monbiot @georgemonbiot.bsky.social · 27/09/2026

I talked this week about the mental health crisis afflicting young people, in particular the isolation and loneliness caused by the neoliberal smashing of society. Everyone needs community. Everyone needs belonging. We cannot survive without them.

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Claire Every @cripademia.bsky.social · 25/09/2026

Mood board for #DVParty Vibing for my 🎓BABEL X SALTBURN🧂 dark academia speculative novel. 🕸️ There are secret clues if you zoom in... #A #CI #Dis

Digital collage titled "THE QUICKSILVER WEB" featuring classical art, moths, a caduceus, a library, and a person on a couch above a color palette and the text "Oxford 2012 - Where the real monsters wear credentials."

#DVparty #literaryagents #publishing #editors #booksky #amquerying

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Katy B @katybrc.bsky.social · 26/09/2026

I ended it with 'There will be a Public Enquiry into this, you're now in a position to ensure that the Doctors & HCPs who are your responsibility are on the right side of history from this point onwards.'

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Katy B @katybrc.bsky.social · 26/09/2026

I've emailed this brilliant article to the board of directors & the council of governors at & my local 🏥 Chelsea & Westminster. They offer great care in other areas of medicine but where #ME is concerned they fail abysmally & they have a responsibility to change that. #pwME

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