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chronicliving123.bsky.social
Chronic Living Therapy (a directory)
@chronicliving123.bsky.social
100 followers 210 following 18 posts
Soon launching - a directory of therapists who understand the biomedical nature of #MECFS, #LongCovid and many other chronic illnesses. https://chroniclivingtherapy.com/
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lucibee.bsky.social
Poison Water - a documentary about the Camelford water poisoning incident is on BBC2 right now.

www.bbc.co.uk/programmes/m...
BBC Two - Poison Water
A mass poisoning of tap water in Cornwall leads to a desperate search for truth.
www.bbc.co.uk
November 26, 2025 at 9:04 PM
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elisaperego78.bsky.social
Epstein-Barr virus is linked to development of the autoimmune disease lupus in new research

www.scientificamerican.com/article/the-...
The Virus That Causes Mono May Also Cause Lupus
Early findings indicate that Epstein-Barr Virus may also cause the autoimmune disease lupus
www.scientificamerican.com
November 13, 2025 at 2:22 PM
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bhanlon15.bsky.social
Medical Republic: 'Fibromyalgia finally gets a genetic fingerprint'

'Additionally, certain risk loci overlapped with long covid (BPTF) and ME/CFS (OLFM4, RABGAP1L/GPR52), two poorly characterised disorders, albeit with different lead variants.'

www.medicalrepublic.com.au/fibromyalgia...
Fibromyalgia finally gets a genetic fingerprint - Medical Republic
A massive global study links the chronic pain condition to 26 genes associated with brain signalling, marking a turning point in understanding its biological roots.
www.medicalrepublic.com.au
November 13, 2025 at 2:28 PM
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valebodi.bsky.social
Epstein-Barr virus reprograms autoreactive B cells as antigen-presenting cells in systemic lupus erythematosus Robinson Lab Stanford
#EBV #SLE #Autoimmunity

Editor’s Summary

Epstein-Barr virus (EBV) has been making waves as a candidate driver of diseases like multiple sclerosis and Long Covid. It
Epstein-Barr virus reprograms autoreactive B cells as antigen-presenting cells in systemic lupus erythematosus
Epstein-Barr virus reprograms autoreactive B cells as antigen-presenting cells to promote pathogenic antinuclear T and B cell responses in lupus.
www.science.org
November 12, 2025 at 9:54 PM
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tomkindlon.bsky.social
"The second-order effects the COVID-19 pandemic has had on pediatric populations"

www.tandfonline.com/doi/abs/10.1...

"SARSCoV2 has given us a major opportunity to accelerate the scientific interest toward post-acute outcomes of infections"

Screenshot from Science for ME update

#LongCovid #MEcfs
The second-order effects that the COVID-19 pandemic has had on pediatric populations — Lael M. Yonker et al. "As viral infections affect millions of children every year, SARS-CoV-2 has given us a major opportunity to accelerate the scientific interest toward post-acute outcomes of infections. This will probably revolutionize the way we see current neglected conditions like Long Covid and post-viral Myalgic encephalomyelitis/chronic fatigue syndromes (ME/CFS)."
November 11, 2025 at 2:25 AM
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bhanlon15.bsky.social
Medscape: 'Research Into ME/CFS Pathology Points to Possible Treatments'

By Miriam E. Tucker

'“We think the immune dysregulation is probably at the beginning of this..."

www.medscape.com/viewarticle/...
Research Into ME/CFS Pathology Points to Possible Treatments
With greater understanding of the complex pathomechanisms of myalgic encephalomyelitis/chronic fatigue syndrome, researchers aim to target treatments.
www.medscape.com
November 7, 2025 at 3:57 PM
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tomkindlon.bsky.social
"Privilege and Pain by Katharine Cheston @kacheston.bsky.social "

thepolyphony.org/2025/10/09/p...

Screenshot from the Chronic Living Therapy @chronicliving123.bsky.social newsletter

chroniclivingtherapy.com/5-elsewhere-...

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Privilege and Pain by Katharine Cheston Post-doctoral researcher at Durham University (a friend of this project who shared her insights into stigma and chronic illness with us), Katharine Cheston has published an article about her own illness and her subsequent research in the Medical Humanities. Highly recommended reading – for shocking insights into how people were treated in the UKs psychology based ‘support’ clinics for ME/CFS sufferers, as well as into Katharine’s current research and approach. The medical humanities offers a new vision for health research, which holds lived experience at the heart of the research process. What makes this vision so compelling – and, I believe, so urgently necessary – is in its commitment to move beyond assumptions, theories, and belief systems and to ground discovery in what people who live with illnesses experience and express. By attending to these experiences, and by making visible and palpable the symptoms and suffering, we can get closer to understanding what a disease might be and how we can better support those who live with it. from Privilege and Pain: Why the Medical Humanities Matter by Katharine Cheston writing for The Polyph
November 1, 2025 at 2:59 AM
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tomkindlon.bsky.social
Articles and useful links from around the web during October 2025.

Screenshot from latest Chronic Living Therapy @chronicliving123.bsky.social e-newsletter
chroniclivingtherapy.com/5-elsewhere-...

#MEcfs #chronicillness #LongCovid @lammasleaves.bsky.social #SevereME
Articles and useful links from around the web during October 2025. From a critical look at Gabor Mate’s work through to some morale-boosting celebrations via pacing tips and much more. Critical review of Gabor Mate’s work on trauma and illness by Nick Haslam Long Covid enquiry – article from the Mirror (UK newspaper) Kitchen-related pacing – tips and tricks from Jeannie Di Bon’s website Rosie Barrett, full time carer, writes for ThereForME on hospital care for Severe MECFS The ‘Effort Preference’ hypothesis – a rebuttal by respected M.E. researchers Privilege and Pain by Katharine Cheston, writing for The Polyphony Big Survey from Action for ME Morale Boost – anniversaries and celebrations
October 29, 2025 at 10:11 PM
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tomkindlon.bsky.social
UK Covid Enquiry, article in The Mirror newspaper
www.mirror.co.uk/news/uk-news...

Screenshot from latest Chronic Living Therapy @chronicliving123.bsky.social e-newsletter
chroniclivingtherapy.com/5-elsewhere-...

#LongCovid #LongCovidKids #LCKids @longcovidadvoc.com @lammasleaves.bsky.social
UK Covid Enquiry, article in The Mirror newspaper The Mirror published an article on children and the Covid Inquiry currently taking place in the UK, featuring activists and people with experience of pediatric Long Covid as well as expert critics of the school closure implementations. Our friends from Long Covid Advocacy are amongst families and activists quoted in the article. Their spokesperson is quoted saying: ‘The government’s failure to prepare schools for Covid-19 wasn’t accidental – it was ideological. When Boris Johnson compared Long Covid to ‘Gulf War Syndrome,’ he exposed a belief system that dismissed biological illness as psychologically influenced. That same mindset drove policies that left children unprotected, unresearched, and unheard.’ Claire Every, spokesperson for Long Covid Advocacy, quoted by The Mirror newspaper
October 29, 2025 at 6:42 PM
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meownersclub.bsky.social
Yes - indeed. These are good men who’ve put in years of work which have benefited us all - we owe them a great deal.
October 28, 2025 at 6:30 PM
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tomkindlon.bsky.social
Nice to get a mention alongside David Tuller @davetuller1.bsky.social in the latest Chronic Living Therapy @chronicliving123.bsky.social e-newsletter

chroniclivingtherapy.com/5-elsewhere-...

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @lammasleaves.bsky.social
Morale boost – anniversaries and celebrations David Tuller and Tom Kindlon have both reached important milestones this month. It is important for morale that we mark and celebrate our community’s tenacity and achievements! Both of them worked tirelessly to debunk (and to publicise the errors of) the notorious PACE Trial. The trial went from heavily influencing both research and government policy, to being the subject of a court case and then used as an example of ‘how NOT to do research’. This was largely thanks to the efforts of a bunch of heroic but exhausted, often bedridden, maths geeks and their collaborators. This month marks David Tuller’s 10 year anniversary of starting his blog on the topic of research into M.E. – he reflects on this important body of work. He is currently running a fundraising drive to support his ongoing research and journalism which you can support if you have funds. Tom Kindlon was recently given the Social Justice Award by his old school for his activism and detailed critiques of the PACE Trial. It’s an astounding achievement for someone who has been sick and largely housebound since 1989, aged 16. His facebook page covers the prizegiving event in detail and shares notes from a speech about his work. Congratulations and thanks to both of them.
October 28, 2025 at 6:26 PM
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aussiastronomer.bsky.social
I've received an 'exclusive' invite to try Nature's new 'research assistant', which will burn down a forest to provide a 'summary of the paper' I'm reading and I have SUCH exciting news for them, that's called an 'abstract' and the actual authors already wrote it for me, no forest-burning required.
October 17, 2025 at 2:10 PM
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secondnaturemb.bsky.social
After the sun came up, the fog rolled in. Chilly, but lovely morning on the lake that I thought I'd share a moment from. You can hear a raven calling from the shore.
October 14, 2025 at 6:18 PM
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valebodi.bsky.social
Yes. I try to remind myself that it’s an incredibly unnatural, counterintuitive and almost impossible thing to do. And even if you do it “perfectly” sometimes you’ll get worse anyway. The only reason it’s worth trying (which it is) is that all the other options and “treatments” suck so bad.
#ME/CFS
From the cfs community on Reddit
Explore this post and more from the cfs community
www.reddit.com
October 14, 2025 at 2:30 PM
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tomkindlon.bsky.social
Tired minds, normal scores: rethinking cognitive fatigue in multiple sclerosis

www.frontiersin.org/journals/neu...

Screenshot from the Science for ME weekly update

#MultipleSclerosis #MS
Tired minds, normal scores: rethinking cognitive fatigue in multiple sclerosis — Spinetti and Zarbo "One of the most frustrating experiences reported by people with MS is the mismatch between how they feel and how they are clinically assessed." "This dissonance is often interpreted, mistakenly, as exaggeration or emotional overlay. In reality, it reflects a fundamental failure of current testing paradigms to capture the temporal dynamics and ecological reality of cognitive fatigue."
October 14, 2025 at 1:02 AM
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bhanlon15.bsky.social
Medical Republic: “Reinfection doubles kids’ risk of long covid”

‘Repeat infections in children and adolescents are linked to a rise in long-term complications, including heart and respiratory problems.’

www.medicalrepublic.com.au/reinfection-...
Reinfection doubles kids’ risk of long covid - Medical Republic
Repeat infections in children and adolescents are linked to a rise in long-term complications, including heart and respiratory problems.
www.medicalrepublic.com.au
October 14, 2025 at 4:13 AM
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longcovidkids.bsky.social
Keeping children, young people and their educators safe at school was an obstacle that should have been taken seriously - and still needs addressing. Clean air - Ventilation, Monitoring and Filtration all still needed along with guidance on when and how to use each. #CovidInquiry #LongCovidKids
October 14, 2025 at 1:40 PM
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longcovidkids.bsky.social
Other evidence doesn’t support this. The belief was that this was a respiratory virus and the focus was on the acute disease, not morbidity. Research is only now beginning to unpick which children and young people are really at risk of #LongCovid #CovidInquiry
October 14, 2025 at 1:40 PM
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longcovidkids.bsky.social
Gavin Williamson assessment on “obstacles” to kids returning to schools in January 2021 - I didn’t think it was justified - Covid wasn’t going to have an impact on children’s health - we had good understanding on which were vulnerable to covid. #LongCovidKids #CovidInquiry
October 14, 2025 at 1:40 PM
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swastrosarah.bsky.social
& because NHS staff have had NO TRAINING. They revert to SOPs (Standard Operating Procedures) which is precisely how #ME px are put at risk by NHS provision.
Everyone relies on A&E, whether privately insured or not. There is nowhere to go that is safe for anyone with #ME in the UK. Justice4ME.uk
October 14, 2025 at 12:57 PM
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georgemonbiot.bsky.social
The thread on one page: skywriter.blue/pages/did:pl...
Page by George Monbiot | @georgemonbiot.bsky.social
ME/CFS is a devastating condition that has long been denied, dismissed, psychologised and underdiagnosed. Research is at last starting to catch up with it, with glimmers of hope for those who have bee...
skywriter.blue
October 8, 2025 at 6:13 AM
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georgemonbiot.bsky.social
On the one hand, medical science is beginning to get a handle on the very complex physiological basis of this disease. On the other hand, we can expect the greatest medical scandal (so far) of the 21st Century – the mass mistreatment and neglect of ME/CFS sufferers – to continue.
October 8, 2025 at 6:13 AM
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georgemonbiot.bsky.social
This commission points to where the government is heading. If the problem is “overdiagnosis” – which appears to be its foregone conclusion – then large numbers of people with horrendous conditions will be put through an even more punishing regime of tests and obstacles to qualify for benefits.
October 8, 2025 at 6:12 AM
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georgemonbiot.bsky.social
To rub salt into their wounds, these patients have watched as the man many see as their tormentor-in-chief has been garlanded with honours, including a knighthood. His latest appointment is yet another blow.
October 8, 2025 at 6:12 AM
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georgemonbiot.bsky.social
Many patients have been forced into useless and sometimes dangerous “buck up” treatments such as Graded Exercise Therapy and CBT, in some cases long after these “treatments” have been debunked. The most eminent advocate of these treatments? Professor Sir Simon Wesseley.
October 8, 2025 at 6:11 AM