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Tom Kindlon

@tomkindlon.bsky.social

6.7K followers 190 following 6.4K posts

95% of posts on #MyalgicEncephalomyelitis, #LongCovid or #chronicillness. With ME/CFS 36 years, severe ME 31 years. @IrishMECFSAssoc trustee 28 years 26 publications in peer-reviewed journals Social media: https://me-pedia.org/wiki/Tom_Kindlon

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Tom Kindlon @tomkindlon.bsky.social · 1d

Please support Dr David Tuller's important work: he has the necessary skills, knowledge & networks to be able to challenge those who promote dubious psychobabble theories & that conditions can be overcome with enough effort/discipline

crowdfund.berkeley.edu/project/47768

#MEcfs #LongCovid #PwME

Trial By Error: Reporting on ME, ME/CFS, Long COVID, & so on...

Ten years ago this month, I launched Trial By Error with a 15,000-word investigation of the fraudulent PACE trial, which tested cognitive behavior therapy and graded exercise therapy as curative treatments for what was then being chronic fatigue syndrome. What I thought was a one-off somehow morphed into an extended academic project on psycho-behavioral research across a broad range of conditions, including what is known as Long COVID.

Amazingly, the pandemic and its consequences have rendered much of my earlier work relevant in a way I could never have anticipated. I had planned to end the project a couple of years ago, but decided to continue as I saw the same investigators I'd already criticized for their flawed research pursuing the exact same strategies in taking on Long COVID.

This current crowdfunding will cover my work on Trial By Error and my position at Berkeley from January-June, 2026. Assuming it goes well, there will be one more crowdfunding campaign next spring to cover July-December, 2026. I plan to retire from Berkeley at the end of 2026. (I will be 70 on October 10, 2026.)

I have been busy since last spring’s crowdfunding!!!

*I’ve written dozens of posts on Virology Blog, many explaining why awful papers about psycho-behavioral interventions for ME/CFS and Long Covid are, in fact, awful.

*I've covered news events and developments not only in the UK and US but also in multiple European countries as well as Australia, New Zealand, and Canada.

*I've posted video interviews with Yale immunologist Akiko Iwasaki about the latest in Long COVID research, University of Edinburgh geneticist Chris Ponting about the DecodeME findings; Columbia University's Ian Lipkin about immune-related abnormalities in ME/CFS; the UK ME Association's Charles Shepherd about the UK government's pathetic plan for ME/CFS; and others.

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Tom Kindlon @tomkindlon.bsky.social · 31m

"Climbing Back from Severe ME/CFS"

www.cfsselfhelp.org/library/clim...

Note: this is not a recovery story but an article on living with the illness

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Climbing Back from Severe ME/CFS
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By Pris Campbell

Note: Pris has been a member of our community since 2012. For samples of the writing she describes in the article, see her website, Poetic Inspirations.

I woke up one day in 1990 with a severe case of what was later to be diagnosed as Chronic Fatigue Syndrome (ME/CFS). This is the story of how I slowly climbed out of the deep hole I fell into and also how I found a new identity through writing.

How CFS Changed My Life

My health had been good up to the day I got sick. I had a career as a clinical psychologist. In terms of physical activity, I swam and sailed, and biked daily.

All that changed suddenly the day in 1990 when I woke up very sick. I couldn’t keep my balance when I got out of bed and keeled over. I shook violently inside as if a vice was tightening around my head, made intolerably worse when exposed to light or sound.

My muscles would become rigid and my eyes jerked back and forth. I had periodic tugging sensations in my head that would pull me into coma-like sleeps, after which all of my symptoms were even worse.

Tom Kindlon @tomkindlon.bsky.social · 3h

I've heard a number of people praise this. I normally don't share things that cost money but this is within the budget of many.

Next Introductory ME/CFS & #Fibromyalgia Course

Registration closes on January 12, 2026. Cost: $20.00.

www.cfsselfhelp.org/online-cours...

#MEcfs #CFS #Fibro #FMS #FM

Introductory Course | ME/CFS & Fibromyalgia Self-Help

www.cfsselfhelp.org

Tom Kindlon @tomkindlon.bsky.social · 4h

Got my postal vote for the upcoming Irish presidential election.

I thought I would plug this free option again. There are quite a lot of votes in Ireland between the
local/European/presidential/general elections & referendums.

#Disability #spoonie #spoonies #chronicillness #mecfs #ireland

Tom Kindlon @tomkindlon.bsky.social · 5h

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Discussion on Science for ME @scienceforme.bsky.social forum:
www.s4me.info/threads/deve...

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Development and validation of blood-based diagnostic biomarkers for [ME/CFS] using EpiSwitch®… 2025, Hunter et al.

Development and validation of blood-based diagnostic biomarkers for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ME/CFS using EpiSwitch® 3-dimensional genomic regulatory immuno-genetic profiling...

www.s4me.info

Tom Kindlon @tomkindlon.bsky.social · 5h

Press release for new UK study:
"Revolutionary blood test for ME / Chronic Fatigue [Syndrome] unveiled"
www.uea.ac.uk/about/news/a...

Paper:
translational-medicine.biomedcentral.com/articles/10....

Some experts comment:
www.sciencemediacentre.org/expert-react...

#MEcfs #CFS #PwME

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Revolutionary blood test for ME / Chronic Fatigue unveiled
By: Communications

Wednesday 8 October 2025
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An arm with a heart shaped plaster at the inside elbow.
With 96 per cent accuracy, a new blood test offers hope for those living with chronic fatigue syndrome - which is often misunderstood and misdiagnosed.
Scientists at the University of East Anglia and Oxford Biodynamics have developed a high accuracy blood test to diagnose Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis (ME/CFS).

The debilitating long-term illness affects millions worldwide - including over 400,000 sufferers in the UK - but is poorly understood and has long lacked reliable diagnostic tools.

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Reposted by Tom Kindlon

George Monbiot @georgemonbiot.bsky.social · 11h

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.

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Reposted by Tom Kindlon

George Monbiot @georgemonbiot.bsky.social · 11h

They desperately want to be able to work, to socialise, to experience all the other joys of life. But because the condition is so poorly understood, they have been repeatedly treated as if they were “malingerers” or “hysterics”. Which suits the government just fine.

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Reposted by Tom Kindlon

George Monbiot @georgemonbiot.bsky.social · 11h

In the firing line, as ever, are the UK’s hundreds of thousands of ME/CFS patients. As a practitioner once remarked, “the bastards don’t want to get better”. If there is one characteristic all the ME/CFS patients I’ve come across have in common, it is a desperation to get better.

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Tom Kindlon @tomkindlon.bsky.social · 6h

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“(Contd) I have hope of the experience being repeated, but also the knowledge that the darkness can swallow me again at any time."

#severeME #CFS

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Tom Kindlon @tomkindlon.bsky.social · 6h

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"The reminder that there is a world of colour and light and space out there can be a boost to the soul – and also a deep sorrow. Because for each hour I spend outside in sunshine, I have passed a thousand days in great suffering. (contd)”

#mecfs #PwME

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Reposted by Tom Kindlon

George Monbiot @georgemonbiot.bsky.social · 11h

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 been left untreated for so long.
There's a huge BUT coming ...🧵
www.theguardian.com/society/2025...

Scientists develop first ‘accurate blood test’ to detect chronic fatigue syndrome

Research could offer hope for ME patients – but some experts urge caution and say more studies needed

www.theguardian.com

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Tom Kindlon @tomkindlon.bsky.social · 16h

From France:

"Myological evaluation of patients with post-acute COVID-19 syndrome".
All 22 had ME/CFS

www.sciencedirect.com/science/arti...

Screenshot from latest Science for ME weekly update

#MEcfs #LongCovid

Neuromuscular Disorders
Volume 53, Supplement, September 2025, 105492
Neuromuscular Disorders
29PMyological evaluation of patients with post-acute COVID-19 syndrome
Author links open overlay panel
F. Authier 1 2
,
M. Aoun Sebaiti 1
,
S. Souvannanorath 1 2
,
E. Malfatti 1 2
,
E. Itti 1 2
,
G. Severa 1 2
1
Paris Est Creteil University, Créteil, France
2
Henri Mondor University Hospital, Créteil, France
Available online 3 October 2025, Version of Record 3 October 2025.

What do these dates mean?

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https://doi.org/10.1016/j.nmd.2025.105492
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Post-acute COVID-19 syndrome (PACS) is a highly multifaceted condition, mimicking myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in patients with the most prolonged evolution. Due to the frequency of muscle pain and exertion intolerance, these patients are often suspected of having a muscular disease. Here we present the results of the neuromuscular evaluation of patients with a clinically defined PACS. Twenty-two consecutive PACS patients (17F, 5M; median age 47 yrs) were included. All had at least one Covid-infection, confirmed by PCR, with mild respiratory symptoms, only one having required hospitalization and transfer to intensive care unit at acute stage. After a variable period between weeks to few months, patients developed chronic fatigue (duration > 6 months; n=22, 100%), post-exertional malaise (n=22, 100%), cognitive impairment including short-term memory loss or “brain fog” (n=22, 100%), muscle pain (n=18, 82%). No other specific neuromuscular clinical sign were found. 100% of patients fulfilled diagnostic criteria for ME/CSF: CDC1994/Fukuda, International Consensus Criteria 2011, US Inst Medicine 2015, UK National Institute for health and Care Excellence, 2021. Nineteen (86%) didn’t show any recovery period after the onset of symptoms. ENMG examination was normal, without myogenic pattern; CK levels were normal; and muscle MRI available in f…

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Tom Kindlon @tomkindlon.bsky.social · 17h

From the UK

COVID-19-related sickness absence among 4,721 NHS staff in England and its relation with long COVID symptoms: findings from NHS CHECK

bmchealthservres.biomedcentral.com/articles/10....

Screenshot from latest Science for ME weekly update

#LongCovid #PASC

COVID-19-related sickness absence among 4,721 NHS staff in England and its relation with long COVID symptoms: findings from NHS CHECK — Dempsey et al.
"Our study found that prolonged COVID-19 symptoms are associated with increased sickness absence in HCWs in England." "We acknowledge that LC is an episodic condition, and periodic symptom relapses may mean that people with the condition require sickness absence and/or workplace adjustments, even after first returning to work post-infection"

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Tom Kindlon @tomkindlon.bsky.social · 17h

From the UK

Immunological and non-immunological features specific to Long-COVID: multiple overlapping aetiologies and potential biomarkers

www.medrxiv.org/content/10.1...

Screenshot from latest Science for ME weekly update

#LongCovid #PASC

Immunological and non-immunological features specific to Long-COVID: multiple overlapping aetiologies and potential biomarkers — Frederique C Ponchel
"Our most important findings however relate to the multiple patterns observed and the overlap (or exclusion) of some features, defining clusters of patients within a syndrome rather than a unique disease (still taken with caution due to small numbers)."

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Tom Kindlon @tomkindlon.bsky.social · 17h

From Latin American countries

Exploring Alice in Wonderland syndrome in adults with persistent headache after COVID-19: a cross-sectional study in Latin America

bmcneurol.biomedcentral.com/articles/10....

Screenshot from latest Science for ME weekly update

#LongCovid #AIWS

Exploring Alice in Wonderland syndrome in adults with persistent headache after COVID-19: a cross-sectional study in Latin America — Carrión-Nessi et al.
"In this cohort, AIWS was a notable feature in adults with persistent headache after COVID-19, particularly in younger individuals with a history of migraine. Experiencing AIWS symptoms during acute infection increased the odds of post-acute AIWS symptoms nearly tenfold, suggesting SARS-CoV-2 may be a potent trigger."

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Tom Kindlon @tomkindlon.bsky.social · 17h

From Sweden:

Prevalence and Clinical Impact of Postural Orthostatic Tachycardia Syndrome in Highly Symptomatic Long COVID

www.ahajournals.org/doi/10.1161/...

Screenshot from latest Science for ME weekly update

#LongCovid #POTS

Prevalence and Clinical Impact of Postural Orthostatic Tachycardia Syndrome in Highly Symptomatic Long COVID — Mikael Björnson et al.
"we can confirm, in agreement with previous studies, that roughly one-third of highly symptomatic long COVID patients suffer from POTS, compared with an estimated prevalence of POTS in general population of 0.2% to 1%." "All groups had Frändin-Grimby scores concordant with an active lifestyle before disease onset" "In our cohort, the prevalence of comorbidities and history of psychiatric illness lies well within or below the range of the Swedish population"

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Tom Kindlon @tomkindlon.bsky.social · 19h

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"The human body and mind were not designed to be encased in darkness, yet, for so many of us, this is our enforced mode of existence."

#SevereMECFS #SevereCFS #VerySevereME

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Tom Kindlon @tomkindlon.bsky.social · 21h

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"As I once wrote to a friend: 'At times I’ve felt myself suspended between elation at discovering a simple pleasure, and despair at the reminder of just how much normality has been denied me.'”

#SevereME #MEcfs

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Reposted by Tom Kindlon

Solve M.E. @solveme.bsky.social · 4d

The federal government has shut down, and the impacts are already being felt across systems and services our community depends on. Read our summary of the key areas of impact and tips on ways to stay connected:
solvecfs.org/government-s...

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Reposted by Tom Kindlon

UK Charity Invest in ME Research @investinmeresearch.bsky.social · 22h

Invest in ME Research Summer Student Bursaries 2025 - Addendum

The IiMER bursaries offered hands-on experience in cutting-edge research focusing on ME

www.investinme.org/iimer-newsle...
#research #MedEd#mecfs #InvestinMEresearch

Banner showing young researcher publicisng the Invest in ME Research Summer Student bursaries for 2025

Reposted by Tom Kindlon

Bateman Horne Center @batemanhornecenter.bsky.social · 5d

Upcoming in Oct! 💙
☕ Oct 8 – Coffee with a Clinician: Navigating Clinical Uncertainty
💬 Oct 14 – Support Group: Healthcare & Self-Advocacy
💬 Oct 21 – Support Group: Parenting w/ Chronic Illness

Free & open to all. Register: https://bit.ly/48DiM7Q

Upcoming events in October 2025 by Bateman Horne Center: Coffee with a Clinician on Oct 8, and Support Groups on Oct 14 & 21.

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Reposted by Tom Kindlon

Adam @abrokenbattery.bsky.social · 3d

On LBC, callers Ann and Annie told Natasha Devon that the rise in long-term sickness is linked to long Covid — and compared the lack of support to what people with #MECFS have faced for decades (10 mins)

youtu.be/BoVpKmsTNFY?...

Natasha Devon - Long-term sickness call in

YouTube video by Broken Battery

youtu.be

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Tom Kindlon @tomkindlon.bsky.social · 23h

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bsky.app/profile/dave...

David Tuller @davetuller1.bsky.social · 1d

Berkeley's fall crowdfunder for Trial By Error is now up!
crowdfund.berkeley.edu/project/47768

David Tuller's Trial by Error Fall 2025

Help UC Berkeley raise $68,000 for the project: David Tuller's Trial by Error Fall 2025. Your gift will make a difference!

crowdfund.berkeley.edu

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Reposted by Tom Kindlon

Emerge Australia @emergeaustralia.bsky.social · 2d

📢 Participants needed! The GLOW Trial is studying gut-based therapy for Long COVID at Uni Hospital Geelong. If you’re 18–65 with moderate–severe symptoms, you may be eligible.

Learn more 👉 [email protected] | 📞 (03) 4215 3078

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Reposted by Tom Kindlon

Emerge Australia @emergeaustralia.bsky.social · 1d

Join the #ausmebiobank in advancing #MECFS and #longCOVID research.
If you're in QLD, NSW or VIC with these conditions, or a healthy volunteer, donate blood today.
Find out more 👉 zurl.co/kSU0r

#MECFSResearch #DonateForScience #MedicalResearch #ThankYouDonors

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