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tomkindlon.bsky.social
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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tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 3d
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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tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 4h
ME/CFS: Is there a comprehensive explanation for this long-misunderstood illness?

www.irishtimes.com/health/your-...

From the October 2025 AMMES Newsletter

#MEcfs #CFS #PwME
ME/CFS: Is there a comprehensive explanation for this long-misunderstood illness? Wirth and Scheibenbogen’s unifying model hypothesis considers a key role for autoantibodies against blood flow-related cellular receptors in skeletal muscle and the brain. The refinement of Wirth and Scheibenbogen’s unifying model hypothesis has led to a therapeutic concept: a drug called Mitodicure, which is “a novel molecule to treat patients with exertional intolerance and post-exertional malaise (PEM)”. Steps are under way to attract funding for clinical trials. Read more here>>
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tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 4h
Please Help David Tuller @davetuller1.bsky.social , Our Champion!

crowdfund.berkeley.edu/project/47768

From the October 2025 AMMES Newsletter

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid
Please Help David Tuller, Our Champion! Photo of David Tuller Last spring, David successfully raised money through Crowdrise in order to continue investigating and blogging about the PACE trial. The funds went to the School of Public Health at the University of California, Berkeley, which created a position for David to continue his investigative work. Now the funds have run out, and Tuller has to depend on the generosity of our community to continue his work.
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Reposted by Tom Kindlon
kacheston.bsky.social
Katharine Cheston @kacheston.bsky.social · 11h
An incredibly moving post:

"I have spent the vast majority of my 20s in bed and alone in the darkness and silence"
Screenshot of an article: "We all have these big ideas about what our 20’s are supposed to look like, how they’re supposed to feel and who we’re supposed to be. I’ve watched through a screen while the majority of people I grew up with have spent their 20s living; been to university, travelled, started careers, fallen in love, had families, bought their own homes, experienced so much. I have spent the vast majority of my 20s in bed and alone in the darkness and silence Meanwhile, in my 20s I have had to have my most basic needs seen to by my Mum, my family, my friends, complete strangers. My Mum and I have spent hours upon hours on the phone to Receptionists, Doctors, Nurses, Social Workers and Carers, often begging for help. I have tried countless medications and experienced countless side effects and struggled to manage countless symptoms by myself. I have been unable to speak and unable to feed myself, unable to sit up and unable to stand, unable to cope with the presence of other people and unable to be safely left alone. I have spent the vast majority of my 20s in bed and alone in the darkness and silence, unable to access the outside world and all it has to offer."
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Reposted by Tom Kindlon
gingerbillie.bsky.social
Ginger Billie @gingerbillie.bsky.social · 11h
I do not think, in my life, I have met a disease that is as cruel, long term, as ME/CFS.

I wrote a card to a researcher thanking them for their work and in it put, “I am too sick to live but too well to die”.
tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 11h
"I still desperately want to live"

A woman who is turning 30 who has spent the last decade living with severe ME reflects on her life

meglobalchronicle.wordpress.com/2023/12/23/i...

#SevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @ludiekje.bsky.social
I still desperately want to live Gepubliceerd op 23 december 2023 One of my favourite films is 13 Going On 30 (honestly, it’s mostly for Mark Ruffalo) and lately I’ve been thinking a lot about Jennifer Garner’s character Jenna chanting “thirty and flirty and thriving” at 13 in her parents basement; then I try to remember all the things I said to myself about what my life might look like at 30 when I was just 13. I wanted to be a forensic psychologist and a vet and a mechanic and a midwife and an ecologist and an infant school teacher and a counsellor and a forensic pathologist (until I realised dead bodies of any species freak me out). I never could decide what I wanted my life to look like when I grew up but I knew I wanted to do so much. I turn 30 next month and I have spent the last decade living with Severe M.E. There have been months of time within that when I would have been classed as having Very Severe M.E and periods of time when I would have been more towards being Moderate-Severe. There have been times when I have felt desolate and times when I have felt so much joy. There has been great loneliness and there has been the love of community. There have been times when I did not know if I’d live to see my 30s and times when I had unbelievable amounts of hope that things would get better. I have survived it all.
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tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 11h
"I still desperately want to live"

A woman who is turning 30 who has spent the last decade living with severe ME reflects on her life

meglobalchronicle.wordpress.com/2023/12/23/i...

#SevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @ludiekje.bsky.social
I still desperately want to live Gepubliceerd op 23 december 2023 One of my favourite films is 13 Going On 30 (honestly, it’s mostly for Mark Ruffalo) and lately I’ve been thinking a lot about Jennifer Garner’s character Jenna chanting “thirty and flirty and thriving” at 13 in her parents basement; then I try to remember all the things I said to myself about what my life might look like at 30 when I was just 13. I wanted to be a forensic psychologist and a vet and a mechanic and a midwife and an ecologist and an infant school teacher and a counsellor and a forensic pathologist (until I realised dead bodies of any species freak me out). I never could decide what I wanted my life to look like when I grew up but I knew I wanted to do so much. I turn 30 next month and I have spent the last decade living with Severe M.E. There have been months of time within that when I would have been classed as having Very Severe M.E and periods of time when I would have been more towards being Moderate-Severe. There have been times when I have felt desolate and times when I have felt so much joy. There has been great loneliness and there has been the love of community. There have been times when I did not know if I’d live to see my 30s and times when I had unbelievable amounts of hope that things would get better. I have survived it all.
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tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 11h
From: ANZMES

#SevereME #PostExertionalMalaise #MyalgicEncephalomyelitis #MEcfs #CFS #PwME
 Understanding Post-Exertional Malaise (PEM) is non-negotiable. Minimal exertion ME ANZMES can trigger it. Such as: Exposure to light. Being touched. Answering a question. #SEVEREMEDAY
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tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 13h
3/

bsky.app/profile/mecf...
mecfsskeptic.bsky.social
ME/CFS Science @mecfsskeptic.bsky.social · 2d
1) There's a new ME/CFS study that is getting a lot of attention in the media. It focuses on epigenetics: how genes are switched on or off by folding DNA in a different way.

You genetic code itself is fixed but the expression of genes can change by environmental factors.
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tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 13h
2/

bsky.app/profile/mecf...
mecfsskeptic.bsky.social
ME/CFS Science @mecfsskeptic.bsky.social · 16h
1) The Physios for ME team published a randomized trial on pacing with a heart rate monitor. It included 32 patients with ME/CFS and 15 with Long Covid.

A brief breakdown of the main results 🧵
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Reposted by Tom Kindlon
cgatist.bsky.social
Chris Ponting @cgatist.bsky.social · 2d
The research used to claim reliability of a ME/CFS blood test has important limitations, shown here.

www.theguardian.com/society/2025...
Three possible confounders in a study proposing an ME/CFS blood test : sex/age, batch and inactivity/severity. Better designed studies by independent researchers are necessary.
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tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 14h
4-page factsheet from the MCS-Aware charity on Air Purifiers

mcs-aware.org/wp-content/u...

Comment: this is not an area I know anything about myself

#MCS #CleanAir #Novid
Air Purifiers An air purifier is not a cure for Multiple Chemical Sensitivity (MCS), but it can provide significant relief. Air purifiers can filter out small particles and chemicals like chloroform, benzene, formaldehyde and other Volatile Organic Compounds (VOCs). VOCs are released from stain-resistant furniture, flame retardant clothing, pressed wood products, carpeting, upholstery and lots of other things. Air purifiers can be extremely helpful to reduce levels of VOCs in the home or workplace. However it is important to do what you can to reduce levels of pollutants in your environment first. Since people with MCS can become sensitised to the chemicals in the machines and filters, it is better to use them occasionally rather than rely on them being on all the time: Fragrance free policies are available for the workplace, and the helpsheet ‘Creating a Low Allergy Bedroom’ can be used to lower the amount of problem chemicals all over the house. Everyone is different. If you can’t get your head around all the different types of filters etc then just make a list of what you want to remove, and contact a company like Healthy House who are used to advising people with MCS. Make sure they will let you return the machine if you react to it, even after several weeks. Details of suppliers are at the end of this helpsheet. Air purifiers designed for “allergies” are not necessarily helpful for people with severe MCS, more information below.
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Reposted by Tom Kindlon
youngemerg.bsky.social
youngEMERG @youngemerg.bsky.social · 19h
🌍 Going to Vienna for #YEVienna2025?
Apply for one of five travel grants to attend the Young EMERG Workshop!

🏨 Grants cover two hotel nights near the venue to support networking and collaboration.
📚 Open to Master’s, PhD, medical students & postdocs.
🔗 Apply via the QR code!

#YoungEMERG
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Reposted by Tom Kindlon
abrokenbattery.bsky.social
Adam @abrokenbattery.bsky.social · 18h
It’s @davetuller1.bsky.social‘s birthday today, so I’ve donated to his fundraising campaign so that he can carry on his important work calling out bad research. Happy Birthday David!

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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tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 1d
New UK research study from a team of sympathetic researchers/clinicians:

Pacing with a heart rate monitor for people with myalgic encephalomyelitis/chronic fatigue syndrome and long COVID: a feasibility study

Free fulltext:
www.tandfonline.com/doi/full/10....

#MEcfs #CFS #PwME
ABSTRACT Background People living with ME/CFS and LC frequently live with post-exertional malaise (PEM), which is associated with impairments in aerobic metabolism. They often use pacing with a heart rate monitor (HRM) to minimize time spent above the anaerobic threshold; however, there is limited research on the feasibility and efficacy. Objective To establish the acceptability, adherence, outcomes, and adverse events associated with pacing with an HRM for a future definitive study. Methods After informed consent and baseline measurements (including 10 min stand test, 5 questionnaires, accelerometry, heart rate variability, and lactate), participants were randomized into a control or intervention group using simple randomization and sealed envelopes. The intervention group used a heart rate monitor with weekly online HRM pacing advice (how to use the HRM, problem solving), and the control group received weekly online pacing advice (how to pace, problem solving). Follow-up measures were repeated, and semi-structured interviews were conducted at two and six months post-enrolment. Results 47 participants were recruited; however, recruiting people with LC was difficult due to wanting to use/already using HR monitoring. The interviews identified that the procedure was acceptable, and the majority of the participants completed the outcome measures. There were some changes from baseline to follow-up in all the outcome measures except the 10-minute stand test and accelerometry. There were no serious adverse events. Follow-up interviews identified 89% continued using HRM at 8 weeks and 66% after 6 months. Conclusions Studies of HRM are feasible and acceptable for ME/CFS and LC, although recruitment strategies should be reviewed for LC.
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tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 1d
Turns out there wasn’t a typo. I have posted a correction.
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tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 1d
2/
Oops, it turns out it wasn’t a typo after all. Futile in this context means the results were so poor, (i) continuing the trial or (ii) in this case, a trial with a bigger sample size, couldn’t be justified. Apologies.
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tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 1d
An article on how being ill with ME, particularly severe ME, is psychologically challenging

meglobalchronicle.wordpress.com/2022/09/25/l...

#SevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @ludiekje.bsky.social
thought scramble Gepubliceerd op 25 september 2022 This disease chases you day and night. It keeps you awake at night and when you eventually fall asleep it follows you into your dreams. There is no escape. Being bedridden with severe ME/CFS also means that you have a lot of time. Although time is the most valuable currency in the world and I have much of it, it is useless. Finding distractions is hard. Then you just lie there alone with your thoughts. It’s like being in a lockdown. Not in the house or in the room but in your body. Only you and your thoughts. Nothing else. They are always there. Not to think is not possible. If the body doesn’t function any more, you are left alone with your thoughts. You might have suppressed them in the past but that’s not possible anymore. You can’t go out to clear your mind or distract yourself with sports or partying. You must face them. With them comes fear. Fear about the future.
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tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 1d
"Life between hope and fear": ME Centraal @mecentraal.bsky.social , a Dutch ME-infochannel, asked their regular columnists to write an article on severe ME

meglobalchronicle.wordpress.com/2022/09/25/l...

#SevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
ME Centraal, a Dutch ME-infochannel, asked their regular columnists to write an article on severe ME, to be published on or around 8 August, Severe ME-day. Marieke Suur, a patient with severe ME, wrote the following. Writing an article about severe ME is not that easy, because how can I express in a few sentences what this life means to me? The weird thing is that since I was diagnosed with ME early in 2020, I went from moderate to severe ME within a month (that’s what happens when you miss the last step of a flight of stairs and have to undergo two operations and ‘rehabilitate’ for six months). I was relieved with this clear diagnosis after years of searching, but this relief soon turned into despair.
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tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 1d
Just dealing with an ME enquiry: a lot of people understandably want to know what they can do to help improve their health. But people also need to try to avoid making themselves worse. Pretty obvious for long-term patients, but can be an awkward topic to bring up.

#MEcfs #PwME #CFS
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Reposted by Tom Kindlon
davetuller1.bsky.social
David Tuller @davetuller1.bsky.social · 3d
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
docseuss.bsky.social
doctober @docseuss.bsky.social · 2d
i mean, they already do. i didn't get medicaid in kansas (kancare) because the doctor dropped his pen and asked me to pick it up, which I did from my chair, as it had rolled over to me, and he said I had 'demonstrated an ability to pick up heavy objects repeatedly' or somethin
tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 2d
(US)
"Medicaid Work Requirements Will Devastate People With Invisible Disabilities — ME/CFS & long COVID patients must qualify as 'medically frail'" (Oct 7, 2025) by Laurie Jones of @meactnet.bsky.social

www.medpagetoday.com/opinion/seco...

3 min read

#MEcfs #LongCovid #chronicillness #Disabled
MedPage Today logo Medicaid Work Requirements Will Devastate People With Invisible Disabilities — ME/CFS and long COVID patients must qualify as "medically frail" by Laurie Jones October 7, 2025 • 3 min read
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tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 2d
(US)
"Medicaid Work Requirements Will Devastate People With Invisible Disabilities — ME/CFS & long COVID patients must qualify as 'medically frail'" (Oct 7, 2025) by Laurie Jones of @meactnet.bsky.social

www.medpagetoday.com/opinion/seco...

3 min read

#MEcfs #LongCovid #chronicillness #Disabled
MedPage Today logo Medicaid Work Requirements Will Devastate People With Invisible Disabilities — ME/CFS and long COVID patients must qualify as "medically frail" by Laurie Jones October 7, 2025 • 3 min read
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tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 2d
Free 15-page booklet, "Disclosure And Discrimination In The Workplace: A Guide For People With Long-Term Health Conditions"

astriid.org/news/disabil...

Publication from the UK but a lot of the information is likely applicable in many countries.

#chronicillness #ChronicallyIll #Spoonies #Spoonie
Astriid logo If you have a long-term health condition, you may encounter disability discrimination during your working life. From being excluded during recruitment to difficulties securing workplace adjustments and climbing the career ladder, people can face multiple barriers during their working day. It can be especially difficult to advocate for yourself when you have a long-term health condition, so this resource details how to tackle disability discrimination while taking care of yourself, and how to access additional support.
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tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 2d
From the US:

Note that there is a typo:
"The mean change in the intervention group ... did not reach the threshold for utility (not futility)."

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

Screenshot from latest Science for ME weekly update

#LongCovid #NeuroPASC #PASC
Preliminary evaluation of a cognitive rehabilitation intervention for post-COVID-19 cognitive impairment: A pilot randomized controlled trial — Jacqueline H. Becker et al. "The mean change in the intervention group compared to the controls in measures of processing speed, learning, memory, language, and of executive function did not reach the threshold for futility."
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Reposted by Tom Kindlon
kjohnstone.bsky.social
Katie J. @kjohnstone.bsky.social · 3d
New Substack post about HEPA air purifiers. They're good, but not quite as good as the advertising might lead you to expect.
mecfs.substack.com/p/do-hepa-ai...
Do HEPA air purifiers really remove 99.95% of dangerous particles from the air?
The 99.95% claim is technically true, but misleading. HEPA air purifiers are good! But not that good.
mecfs.substack.com
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tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 2d
"Six things I learned from my time in a wheelchair" by a woman with ME and POTS

chronicallycraptastic.com/six-things-i...

#MEcfs #POTS #Disabled #Disability #chronicillness #Spoonies
#Spoonie
Six things I learned from my time in a wheelchair Nov232023 Blog Spread the love Photo of a woman in a wheelchair on a bridge overlooking a river or something similar Wheelchairs are shit. No, wait, let me rephrase that: Wheelchairs are absolutely fantastic and afford disabled people a world of independence and mobility they would otherwise be stripped of. But – you knew that already.
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