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tomkindlon.bsky.social
Tom Kindlon
@tomkindlon.bsky.social
6.7K followers 190 following 6.5K 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 · 2d
Thanks very much to Joan Crawford (in the UK) for undertaking this challenge in aid of an interesting research treatment trial in Norway that requires further fund-raised money/donations

www.justgiving.com/crowdfunding...

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Photo of Joan on a bike Organised by Joan Crawford Health and medical Story Joan's story In 2004 I was diagnosed with ME. Then, and it remains the case today that there are no NICE approved medical treatments for this profoundly disabling condition. I was fortunate enough to be re-diagnosed with a different condition in 2005, which allowed me access to effective medical treatments. It's been a long slog; however, I am recovered to get back into cycling which I loved before becoming ill. My cycle will raise funds for a Norwegian Daratumumab trial Daratumumab is a medical treatment used in various cancers and auto-immune conditions. In Norway small scale trials has proven remarkably effective in people with ME, compelling enough to warrant larger stage 3 clinical trials, which are now underway in Norway. Around 2/3rds of ME sufferers respond to this treatment giving them a dramatic improvement in the
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Reposted by Tom Kindlon
mecfs.at
Ö. Ges. für ME/CFS @mecfs.at · 25d
❗Help us spread ME/CFS awareness❗

People living with #ME/CFS are severely ill, yet often don't receive welfare, specialised medical treatment and accessible education opportunities.
Furthermore, sufficient awareness in the areas of politics, healthcare and research is lacking.
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Reposted by Tom Kindlon
mecfs.at
Ö. Ges. für ME/CFS @mecfs.at · 16d
❗Help us spread ME/CFS awareness❗

People living with #ME/CFS are severely ill, yet often don't receive welfare, specialised medical treatment and accessible education opportunities.
Furthermore, sufficient awareness in the areas of politics, healthcare and research is lacking.
3 31 54
Reposted by Tom Kindlon
crashpadseries.bsky.social
CrashPadSeries.com @crashpadseries.bsky.social · May 12
Today is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Awareness Day.

Byrd @sexedwithbyrd.bsky.social has launched an important online course addressing #MECFS and #LongCovid within Intimacy and Relationships. Please help us spread the word!

crashpadseries.com/queer-porn/c...
CrashPadSeries.com Partners with Sex Educator Byrd on Special Online Course Addressing ME/CFS and Long COVID and Intimacy - CrashPad Series
CrashPadSeries.com partners with sex educator Byrd's online course on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and intimacy.
crashpadseries.com
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Reposted by Tom Kindlon
mecfs.at
Ö. Ges. für ME/CFS @mecfs.at · 19h
❗Help us spread ME/CFS awareness❗

People living with #ME/CFS are severely ill, yet often don't receive welfare, specialised medical treatment and accessible education opportunities.
Furthermore, sufficient awareness in the areas of politics, healthcare and research is lacking.
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Reposted by Tom Kindlon
murtoz.bsky.social
Michiel @murtoz.bsky.social · 3d
It's David's birthday today, so I've donated to his crowdfunder. Please try to join me if you can!

Happy Birthday, @davetuller1.bsky.social, and thank you for still fighting for us!
davetuller1.bsky.social
David Tuller @davetuller1.bsky.social · 5d
Berkeley's crowdfunder has reached 5% of the goal after its first day, with 49 donors! This pace won't keep up, but it's a decent start. Thanks to all past, current and future supporters!
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
drelke.bsky.social
Elke Hausmann @drelke.bsky.social · 7h
#LongCovid
A recurrent narrative is how they were struck by their first encounters with a post Covid patient: 66 Interviewer: But what was it that shocked you when you met them? You said you were almost shocked. 99 66 Informant: Yeah, [...] [she] was like this super active person who works out at least three, four times a week, manage to have a full time job and stuff [...] but when I did like this 6 min walk test, then just: 'Is this for real, like?' 99 66 Interviewer: Because she was so ill? 66 Informant: Yeah, and [...] I'm looking at the saturation meter, and the pulse was just wow, wow. Then you get like this: 'Is there something wrong with the meter?'. And then it was also that, suddenly I just see how she drops in saturation, [...] So that was probably what made me just: 'oh shit, what is this?'.
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Reposted by Tom Kindlon
swalexander.bsky.social
SWA @swalexander.bsky.social · 5h
Key sentence: "Our findings challenge assumptions about the uniqueness of post-acute COVID-19 morbidity and suggest the long-term burden of influenza may be underrecognized."
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tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 10h
The Canadian ME/CFS research network, ICanCME, is organizing a free and online conference from Tuesday November 4 to Thursday November 6

Link:
icancme.ca/research/202...

Screenshot from Massachusetts ME/CFS & FM Association @massmecfs.bsky.social October newsletter

#MEcfs #PwME
Virtual Conference on ME/CFS: ICanCME2025 November 4 to 6 The Canadian ME/CFS research network, ICanCME, is organizing a free and online conference from Tuesday November 4 to Thursday November 6 from 1:00 to 5:00 PM (ET) each day. Topics include the current state of research, the impact of comorbidities on research, and thinking about research design. The full schedule and a registration link can be found here.
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Reposted by Tom Kindlon
davetuller1.bsky.social
David Tuller @davetuller1.bsky.social · 23h
An interview with University of Edinburgh's Chris Ponting @cgatist.bsky.social about the PRIME project to increase ME/CFS research infrastructure;
virology.ws/2025/10/13/t...
Trial By Error: Interview with Professor Chris Ponting on Building ME/CFS Research Infructure with PRIME | Virology Blog
By David Tuller, DrPH This is a crowdfunding month for UC Berkekely and Trial By Error. If you'd like to support my work, here's the link: https:/ ...
virology.ws
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tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 11h
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."
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tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 11h
Return to work with long COVID: a rapid review of support and challenges

bmjopen.bmj.com/content/15/1...

Screenshot from the Science for ME weekly update

#LongCovid #PASC
Return to work with long COVID: a rapid review of support and challenges — Sarah Daniels et al. "Barriers to the provision of support at organisational level included lack of understanding of LC symptoms, insufficient workplace guidance and educational gaps among managers. Individual barriers included threat of income loss, remote working and disconnection from the workplace."
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tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 11h
Post Covid-19 Condition as a Diagnosis: A Qualitative Study on Epistemological Tensions Among Experts in Sweden

onlinelibrary.wiley.com/doi/10.1111/...

Screenshot from the Science for ME weekly update

#LongCovid #PASC
Post Covid-19 Condition as a Diagnosis: A Qualitative Study on Epistemological Tensions Among Experts in Sweden — Anna Bredström and Sofia Morberg Jämterud "The key conflict among experts concerns the extent to which post Covid should be considered a unique illness requiring specialist care or whether it has more in common with other long‐term illnesses."
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tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 11h
From Sweden

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

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

Screenshot from the 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. "one-third of highly symptomatic patients with long COVID were diagnosed with POTS. The group diagnosed with POTS had significantly lower physical capacity and higher heart rate during physical capacity tests compared with non-POTS patients. The similarities in symptom prevalence and types of symptoms among long COVID patients with and without POTS pose clinical challenges in the clinical work-up"
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tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 11h
Comparative risk of post-acute sequelae among adults following SARS-CoV-2 or influenza virus infection: A retrospective cohort study among United States adults

journals.plos.org/plosmedicine...

Screenshot from the Science for ME weekly update

#MEcfs #LongCovid
Comparative risk of post-acute sequelae among adults following SARS-CoV-2 or influenza virus infection: A retrospective cohort study among United States adults — Joseph A. Lewnard et al. "Whereas PAS are widely known to occur after COVID-19, our results suggest that the risk of PAS associated with influenza may be under-appreciated and worthy of further study."
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tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 11h
From South Korea:

"findings suggest alterations in immune, glucose, & lipid metabolism pathways, along with neuroinflammation & neurodegeneration, contribute to the psychiatric PASC phenotype"

www.nature.com/articles/s41...

Screenshot from Science for ME update

#LongCovid #COVIDBrain
Discovery of molecular signature of long-term psychiatric sequelae in COVID-19 through proteome profiling of dried blood spots — Baik et al. "findings suggest that alterations in immune, glucose, and lipid metabolism pathways, along with neuroinflammation and neurodegeneration, contribute to the psychiatric PASC phenotype"
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tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 14h
3/
"And on the other hand I find it difficult to really show others how little I can do. That’s an unimaginably vulnerable feeling."

#MEcfs #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #CFS
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tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 16h
2/

"With other people around, my body generates more adrenaline and I become more lively than I really am. Also because I want a visit to be a nice experience, for the other person. But it invariably results in a crash."

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
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Reposted by Tom Kindlon
severemecymru.bsky.social
Severe ME Difrifol Cymru @severemecymru.bsky.social · 5d
A BIG THANKS to all who’ve supported this effort. And there is still time to contact your MS & urge them to attend & participate in the debate.
Find your local MSs: tinyurl.com/3dea9my3
Personalise a template: www.500milesfor.me
Tell us: [email protected] 2/2
Find a Member of the Senedd
We are the Welsh Parliament, made up of 60 Members. You are represented in the Senedd by five Members (MSs) - one for your local area and four for the region of Wales you live in.
tinyurl.com
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Reposted by Tom Kindlon
batemanhornecenter.bsky.social
Bateman Horne Center @batemanhornecenter.bsky.social · 17h
Oct 14 | 1:00 pm MDT
Support Group: Navigating Healthcare w/ Self-Advocacy

We’ll discuss: lessons learned, recognizing patterns, & stories of advocating for care.
Free & open to all: https://bit.ly/46BdTMo

#MECFS #LongCOVID #SupportGroups
Woman sitting on a couch holding a laptop displaying "Online Support Group" screen. Event details: Oct 14, 1:00 pm MDT, hosted by Bateman Horne Center, focuses on navigating healthcare with self-advocacy skills.
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tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 18h
🧵
"How I’m really doing"

meglobalchronicle.wordpress.com/2024/12/08/h...

How appearances can be deceiving in terms of what people with ME can do consistently.

"So what people see when I post pictures of an outing are really exceptions based on adrenaline."

#MEcfs #PwME #CFS

1/
How I’m really doing Gepubliceerd op 8 december 2024 Yesterday, a good friend asked me what I am truly capable of doing. For example, whether I can get dressed and go downstairs every day. Whether I can make tea or coffee for myself. My answer:“No, I cannot get dressed every day. In fact, I haven’t done that in ages. Making tea and coffee isn’t that easy. If I do, it’s at the expense of doing something else. For a while I had a kettle with hot water next to my bed but I spilled too often while pouring and as a result burnt myself. I go downstairs on good days to have my meal lying on the couch. That’s possible for about three to four times a week But today I washed my hair and then I can’t do that. So what people see when I post pictures of an outing are really exceptions based on adrenaline.
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tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 21h
Reminder: The DecodeME team want to do a related genetic study with the samples they have collected already but unfortunately don’t have the funding yet:
megenetics.org.uk/our-projects...
#MEcfs #PwME #CFS
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Reposted by Tom Kindlon
knivesonly.bsky.social
Kolt (rustled jimmies) @knivesonly.bsky.social · 1d
it was @davetuller1.bsky.social‘s birthday over the weekend!

consider giving to David’s Trial by Error Fall 2025 crowdfunding to keep his amazing work providing accurate, myth-busting reporting on ME/CFS and Long COVID going

crowdfund.berkeley.edu/project/47768

happy birthday, David! & thank you💗
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
Wearable technology in the management of complex chronic illness: preliminary survey results on self-reported outcomes

www.frontiersin.org/journals/dig...

Screenshot from the Science for ME weekly update

#MEcfs #LongCovid #Spoonies #Spoonie
Wearable technology in the management of complex chronic illness: preliminary survey results on self-reported outcomes — Sawyer et al. "Home-monitoring based mobile applications are feasible and acceptable for a motivated subgroup of people with energy-limiting complex chronic illnesses, and are associated with self-reported benefits in energy management and participation in daily activities."
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tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 1d
Relationships between fatigue, cognitive function, and upright activity in a randomized trial of oxaloacetate for myalgic encephalomyelitis/chronic fatigue syndrome

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

Screenshot from the Science for ME weekly update

#MEcfs #PwME
Relationships between fatigue, cognitive function, and upright activity in a randomized trial of oxaloacetate for myalgic encephalomyelitis/chronic fatigue syndrome — Vernon et al. "fatigue was only marginally predictive of UP Time, and no clear interaction by treatment group emerged, indicating that UP Time may be influenced by additional factors such as orthostatic intolerance, post-exertional malaise, or pacing"
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tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 1d
UK MEA Governance Review Stage 1 Announcement Autumn 2025

meassociation.org.uk/2025/10/the-...

Screenshot from the Science for ME weekly update

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
UK MEA Governance Review Stage 1 Announcement Autumn 2025 "In 2025, the board commissioned an independent governance review to understand what is working well, and to identify areas where improvement is needed... " Areas for development include: "Leadership and role clarity: At the time of the review, the organisation operated without a Chief Executive. Trustees were heavily involved in day-to-day operational matters, which blurred the lines between governance and management." The report also highlights the need for better strategic planning, staff training and management, and member engagement.
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