iiinova — where your digital self keeps evolving

Reposted by Elke Hausmann

Alem Matthees @alemmatthees.bsky.social · 11h

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

32810

Elke Hausmann @drelke.bsky.social · 9h

I guess that’s the ‚multisystem‘ phenotype - at least that’s how it would make sense to me…

000

Elke Hausmann @drelke.bsky.social · 13h

That reminds me of the book ‚The Song of the Cell‘ by Siddhartha Mukherjee, which manages to convey that same sense of awe as this article…

Screenshot of a book review for ‚The Song of the Cell. The Story of Life’ by Siddhartha Mukherjee - highly recommended if you want to feel more of that ‚awe for what life is‘

010

Reposted by Elke Hausmann

David Tuller @davetuller1.bsky.social · 06/10/2026

Wow, this interview with Guardian columnist @georgemonbiot.bsky.social about the mistreatment of people with ME/CFS has racked up 13,000 views in the last few days...https://www.youtube.com/watch?v=MaaeQ7crLz4

47619

Reposted by Elke Hausmann

ME Association @meassociation.org.uk · 05/10/2026

The HERITAGE study needs people with lived experience of ME/CFS or Long Covid. Complete 5 surveys over 12 months to share your experiences and help shape better care and support. Join: heritage.leeds.ac.uk/join

074

Elke Hausmann @drelke.bsky.social · 04/10/2026

Yes - we‘ve gone from only a tiny minority of HCPs having heard of the term PEM, to many more referencing it - but without really understanding what it is and what it means to live with PEM. I don’t know what’s worse… #LongCovid #ME

0112

Reposted by Elke Hausmann

Alem Matthees @alemmatthees.bsky.social · 03/10/2026

(1/3) Perhaps what the GP wrote was lost in translation striving for balance? Of course exercise (beyond our capacity) is inherently dangerous, it is built into the definition of PEM. When improving, it is also far more useful to do hobbies or chores than a bland exercise in the name of exercise.

theguardian.com

Specialist services are vital to help people with ME/CFS | Letter

Letters: Readers respond to George Monbiot’s article about how those with myalgic encephalomyelitis, or chronic fatigue syndrome, have been failed by the health system

53710

Reposted by Elke Hausmann

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

18925

Reposted by Elke Hausmann

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

16632

Reposted by Elke Hausmann

Long Covid UK @longcoviduk.bsky.social · 02/10/2026

📢 Help shape the future of care for Long COVID and ME/CFS! The HERITAGE study is looking for people with lived experience of Long COVID and ME/CFS to take part in our study! As a part of Work Packages 1 and 2, you will: ✅ Complete 5 questionnaires over 12 months ✅ Share your symptoms and experie…

Image with a header saying Health Effects From Infection Sequelae Tailoring Services and Advancing Guidance. Logos for the Heritage study, the University of Leeds, the University of Leicester, the University of Oxford and the NIHR are also shown. Main text reads Why is Heritage needed? Care for Long Covid and ME/CFS varies across the NHS. Heritage will explore what services are provided, what people experience, what works, what needs to change. Your experiences can help inform the future of Long Covid and ME/CFS care. There is a QR code above which it says Join the Heritage Study. A website address is also given of https://heritage.leeds.ac.uk/join/

2105

Reposted by Elke Hausmann

traceyburgess.bsky.social @traceyburgess.bsky.social · 02/10/2026

Thanks George & @davetuller1.bsky.social for a great discussion. I've seen many GP's & one for over 10 years. Def thought my issues were psycho, then in early 2020 I spoke about the PACE 'trial', a few years ago they said, "I'm sorry Tracey", last visit they said, "You know your own body". Progress.

041

Reposted by Elke Hausmann

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

14287117

Elke Hausmann @drelke.bsky.social · 01/10/2026

#POTS - not always a stand-alone and separate diagnosis! I wish these kind of articles would not only acknowledge the links with #LongCovid, but also #ME

Experts from Frontiers in Neurology., a leading journal in neurological research, published that POTS is now a 'major phenotype' in the long-term impacts of COVID, meaning that POTS has become one of the most recognisable long-term impacts of COVID-19 infection.
Patient testimonies submitted to POTS UK, an organisation dedicated to research and support for the condition, evidence just one more way that the impacts of the pandemic are still being felt.
Jamie, 29, told the charity: "May 18th, 2022, is the day I got COVID, and the day my life changed."
She said: "Not long after COVID, I began experiencing dizziness and gastrointestinal issues, alongside overwhelming fatigue. It became increasingly difficult to keep up with both my career and lifestyle.

051

Reposted by Elke Hausmann

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”.

23414

Reposted by Elke Hausmann

Long Covid UK @longcoviduk.bsky.social · 29/09/2026

📢 Important Update from the APPG on Long Covid: Following Jo Platt MP stepping down from her role as Chair, the APPG on Long Covid will hold an Extraordinary General Meeting (EGM) to elect a new Chair on Tuesday 20 October at 2pm.

193

Reposted by Elke Hausmann

Alem Matthees @alemmatthees.bsky.social · 28/09/2026

(1/12) No. The painful truth about #LongCOVID is not the alleged suppression of brain retraining, but that the scale of the pandemic and aftermath were preventable. Systemic and collective failures emerged from a chain of poor decisions. Millions dead. Millions of lives ruined. Trillions $ lost.

wired.com

The Painful Truth About Long Covid

There might finally be a way forward for long Covid treatment—if only you were allowed to talk about it.

24815

Elke Hausmann @drelke.bsky.social · 28/09/2026

‚Socialised medicine‘ is an American term that is often used pejoratively. It does not necessarily follow that a healthcare system funded by taxes should create increasing waiting lists. This is down to political choice of underfunding within a neoliberal context, which itself creates more illness.

182

Reposted by Elke Hausmann

Waldmeer @waldmeer.eurosky.social · 27/09/2026

Was mir besonders wichtig ist: Pacing ist KEINE "behutsame Steigerung" und KEINE "vorsichtige Aktivierung"! Pacing bedeutet Anpassung der Aktivität zur Bewahrung und Stabilisierung vorhandener Spielräume. Diesen Begriff dürfen sich an ME/CFS erkrankte Menschen auf keinen Fall nehmen lassen!

212141

Reposted by Elke Hausmann

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 🖇️👇

1114

Reposted by Elke Hausmann

Dr Eleanor Roberts @elbelbumble.bsky.social · 27/09/2026

Thanks again @georgemonbiot.bsky.social for your advocacy. A point about the PACE trial researchers wanting their therapy to be right struck home. I was treated at the Maudsley, workplace of Simon Wesley, and Trudie Chalder (who I was also working with in another capacity!) youtu.be/H2rRf_f2hJs?...

youtu.be

LBC | Natasha Devon interview with George Monbiot

YouTube video by Broken Battery

3188

Reposted by Elke Hausmann

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

📻 YouTube recording of Natasha Devon's LBC radio show (26/9/26) in which guest George Monbiot articulates many of the talking points from his article about ME/CFS in the Guardian earlier this week. Thanks to Adam for making the whole interview available so quickly. youtube.com/watch?v=H2rR...

youtube.com

LBC | Natasha Devon interview with George Monbiot

YouTube video by Broken Battery

0287

Reposted by Elke Hausmann

emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 26/09/2026

I’m only seeing people with ME or Long Covid sharing this. If you’re not affected, can you please read it & share? Ableist propaganda goes viral all the time, which encourages outlets to publish more of it. Can we please make the truth go viral instead?

3198161

Reposted by Elke Hausmann

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.

821273

Reposted by Elke Hausmann

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 🙏

16832

Reposted by Elke Hausmann

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

💬 Reminder that George Monbiot will be talking to Natasha Devon on LBC today about #ME. 📻 6-9pm Saturday 🔥 Both have been exceptional allies to #pwME so it should be a good one! Note: if listening on phone, you need the LBC app which needs setting up before. www.lbc.co.uk/radio/

lbc.co.uk

LBC Radio - Listen & Watch Live | LBC

Talk radio for the UK, letting you have your say on the big issues of the day, with breaking news and opinion.

24417

Elke Hausmann @drelke.bsky.social · 26/09/2026

‚Monbiot’s column is a harrowing but necessary read.‘ #LongCovid #ME

0176

Reposted by Elke Hausmann

Tom Kindlon @tomkindlon.bsky.social · 26/09/2026

“Blistering New Monbiot Column on ME/CFS Mistreatment, Neglect” By David Tuller virology.ws/2026/09/26/t... #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Trial By Error: Blistering New Monbiot Column on ME/CFS Mistreatment, Neglect
Leave a Comment / By David Tuller / 26 September 2026
By David Tuller, DrPH

George Monbiot, the British investigative journalist and longtime contributor to The Guardian, has written a corker of a column about the mistreatment and abuse of people with ME/CFS, including those with Long COVID. This newest piece follows two of Monbiot’s previous Guardian essays—in March, 2024, and October, 2024–that were equally blunt about the failures of the medical and academic establishments in this domain.

13715

Reposted by Elke Hausmann

ME Association @meassociation.org.uk · 26/09/2026

#NatashaDevon shared on social media that she'll cover The Guardian article ME/CFS on the LBC radio programme on Saturday evening (6pm-9pm) and will be joined by the author George Monbiot. Listen here: www.globalplayer.com/catchup/lbc/uk… #MECFS #LBCRadio

2208

Reposted by Elke Hausmann

Tom Kindlon @tomkindlon.bsky.social · 24/09/2026

As many of you already know, @georgemonbiot.bsky.social has published another hard-hitting article on ME in the Guardian today. Great to see such coverage, especially as the Guardian published some rubbish by others before www.theguardian.com/commentisfre... #MEcfs #PwME #MyalgicEncephalomyelitis

Opinion
ME / Chronic fatigue syndrome
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed
George Monbiot
George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a shocking social crisis playing out behind closed doors
Thu 24 Sep 2026 01.00 EDT
Somebody sitting on a bed looking at a wall with a display of negative past medical experiences
Illustration: Bill Bragg/The Guardian

46524

Reposted by Elke Hausmann

C.H. Romatowski @chromatowski.bsky.social · 24/09/2026

I am so desperate for someone to publish their data on how many of “healthy control” volunteers screened positive for Long Covid. I’ve been hearing of this problem for years, I think it would be so valuable to document it.

515341

Reposted by Elke Hausmann

It's ME(Jaime) @exceedhergrasp1.bsky.social · 24/09/2026

A thread of all the talks from yesterday's NIH conference on multisystem disorders, including #endometriosis, #MECFS, chronic pain disorders, #lupus and more: 🧪 Talk 1: bsky.app/profile/exce...

13517

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

Yep - sometimes from one minute to the next. Curtains. And you were SOOO sure that today would be a good day! Still gets me after all this time. #LongCovid #ME

070

Reposted by Elke Hausmann

Long Covid Advocacy @longcovidadvoc.com · 23/09/2026

Our original article to Miranda's 'I Haven't Been Entirely Honest with You' We still hope Miranda can use her considerable platform to advocate responsibly & amplify that people with severe ME have no commissioned NHS care. www.longcovidadvoc.com/post/dear-mi...

longcovidadvoc.com

0135

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

Das ist ein Riesenproblem mittlerweile - PEM ist in aller Munde, wird aber mitnichten von allen verstanden! #LongCovid #ME

032

Reposted by Elke Hausmann

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

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

29437138

Reposted by Elke Hausmann

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.

313859

Reposted by Elke Hausmann

Tessa Munt MP 🔶 @tessamunt.bsky.social · 24/09/2026

Thank you so much, George! Your conclusion speaks volumes, reflecting so much that I hear from #pwME.

37426

Reposted by Elke Hausmann

Nina Weber @ninaweber.bsky.social · 24/09/2026

"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." #MECFS

0227

Reposted by Elke Hausmann

chiller @chiller.eurosky.social · 24/09/2026

"of the tens of thousands of practitioners who would benefit [...] only 74 had completed the new learning module on ME/CFS guidance. Meanwhile, as recently as last summer, the DWP was still teaching its trainees elements of the old, discredited view of the condition" Good piece from George. #mecfs

0218