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tomkindlon.bsky.social
Tom Kindlon
@tomkindlon.bsky.social
6.8K followers 200 following 6.7K 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 · 22d
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.
tomkindlon.bsky.social
The Role of Nuclear and Mitochondrial DNA in Myalgic Encephalomyelitis: Molecular Insights into Susceptibility and Dysfunction

www.mdpi.com/2673-8856/5/...

Screenshot from latest Science for ME weekly update

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
The Role of Nuclear and Mitochondrial DNA in Myalgic Encephalomyelitis: Molecular Insights into Susceptibility and Dysfunction — Elremaly et al. Review. "We explore how nuclear and mitochondrial DNA influence disease risk, symptom manifestation, and cellular dysregulation, with particular focus on genetic variants, mitochondrial bioenergetics, epigenetic modifications, and transposable element activation."
November 20, 2025 at 2:04 AM
tomkindlon.bsky.social
From Austria:

The Clinical Relevance of Mast Cell Activation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

www.mdpi.com/2075-4418/15...

Screenshot from latest Science for ME weekly update

#MCAS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
The Clinical Relevance of Mast Cell Activation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome — Rohrhofer et al. "our findings suggest that the prevalence of MCA increases with ME/CFS disease progression." "Limitations of our study include its reliance on self-reported data in the CCCFS patient cohort, the retrospective design of the ME/CFS-MCA patient cohort, and potential differences in MCAS diagnostic procedure."
November 20, 2025 at 1:51 AM
tomkindlon.bsky.social
M.E. = Myalgic Encephalomyelitis

ME Essential is the magazine for members of the (UK) ME Association

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
5% ME cartoon: looking over a garden fence, talking to neighbour 95% M.E. cartoon: lying in bed Thank you to John Simpson for sending his super drawing which perfectly portrays ME/CFS and what the outside world sees and doesn't see. John commented in his email "I have no claim to any artistic talent..." Well, John, I beg to differ! Caroline Cavey Editor ME ESSENTIAL WINTER 2024
November 19, 2025 at 10:47 PM
Reposted by Tom Kindlon
ahimsa-pdx.disabled.social.ap.brid.gy
It's not quite the end of 2025 yet but here's a summary of what #meaction did this year:

"#MEAction's Top 10 Accomplishments of 2025"

https://www.meaction.net/post/meaction-s-top-10-accomplishments-of-2025

#mecfs #pwme #advocacy #activism
#MEAction's Top 10 Accomplishments of 2025
This year has been hard- we know because we have been on the ground fighting for ME and Long COVID every single day. In 2025, #MEAction has accomplished a lot. Just take a look below.1. Advocating for funding for the ME/CFS Research Roadmap: Secured a meeting with the NIH Director, and got the roadmap included in Congress’ draft appropriations language.2. Helping Minnesotans with ME/CFS and Long COVID apply for home care support by launching the Minnesota Home Help Navigation Program.3. Fighting
www.meaction.net
November 19, 2025 at 6:27 PM
tomkindlon.bsky.social
(UK) Recording of Westminster Hall debate: "Government support for people with myalgic encephalomyelitis" (i.e. in the Houses of Parliament)

www.parliamentlive.tv/Event/Index/...

This 4:30pm debate was led by Tessa Munt MP @tessamunt.bsky.social

#MyalgicEncephalomyelitis #PwME #MEcfs #CFS
Westminster Hall Wednesday 19 November 2025 Meeting started at 2.30pm, ended 5.34pm screenshot of video
November 19, 2025 at 6:29 PM
Reposted by Tom Kindlon
mecfsskeptic.bsky.social
1) 🇺🇸 The RECOVER study published its data on Long COVID trajectories.

Of those infected with SARS-CoV-2 infection, 5% had persistently high Long COVID-related symptom burden. An additional 12% had a high burden that fluctuated but did not improve over time.
November 18, 2025 at 8:43 AM
Reposted by Tom Kindlon
mecfsskeptic.bsky.social
1) INFO FOR RESEARCHERS: The charity ME Research UK (MERUK) has an open call for PhD-level research funding.

Applicants should submit an Outline Proposal Form before Friday, 9 January 2026.
November 18, 2025 at 2:30 PM
Reposted by Tom Kindlon
mecfsskeptic.bsky.social
1) A paper from earlier this year reported that ME/CFS patients have a much bigger risk of cardiovascular disease than controls (adjusted odds ratio of 3.26).

The study used data from the National Health Interview Survey (NHIS), however, which has some big limitations...
November 19, 2025 at 10:39 AM
Reposted by Tom Kindlon
abrokenbattery.bsky.social
Q&A on the Photography & Collaboration Arts Collective (PCAC) blog with photographer Jeremy Jeffs @jeremy-jeffs.bsky.social, diagnosed with ME in 1987, discussing his powerful project photographing people living with the illness.

www.pcac.ngo/blog/jeremy-...
November 13, 2025 at 8:19 AM
Reposted by Tom Kindlon
abrokenbattery.bsky.social
Clip from January 2022, @mark_bonnar appeared on Celebrity Catchphrase supporting @actionforme. He explained that he backs the charity because #MECFS is very misunderstood, very underfunded and affects several people he knows personally.
November 16, 2025 at 11:29 AM
Reposted by Tom Kindlon
abrokenbattery.bsky.social
Mark Bonnar was also recently on Celebrity Traitors, supporting Action for ME — although unfortunately he didn’t win.
abrokenbattery.bsky.social Adam @abrokenbattery.bsky.social · 3d
Clip from January 2022, @mark_bonnar appeared on Celebrity Catchphrase supporting @actionforme. He explained that he backs the charity because #MECFS is very misunderstood, very underfunded and affects several people he knows personally.
November 16, 2025 at 11:36 AM
tomkindlon.bsky.social
On #InternationalMensDay, some articles on men & #MyalgicEncephalomyelitis

Not So Macho: A male perspective on M.E. www.mediafire.com/file/reaem7f...

Men with #CFS www.mediafire.com/file/7mr6eol...

'Men & M.E.' booklet (2007) Intro: www.mediafire.com/file/h14bjcf...

1/
Photo of distressed-looking man with his head in his hands
November 19, 2025 at 1:14 PM
Reposted by Tom Kindlon
ninconnue17.bsky.social
Yeah I have all but 3 of those symptoms to some extent and trust me, folks, you don't want this. Long Covid suuuucks. Mask up! Advocate for clean air! Fund the research! #LongCovid #MEcfs #POTS
tomkindlon.bsky.social Tom Kindlon @tomkindlon.bsky.social · 8d
(Repeat from a few months ago)
"Most Troubling Symptoms"

#MEcfs #LongCovid

1/
Most Troubling Symptoms ME/CFS Long COVID Fatigue or low energy 95.62% 88.28% Feeling worse after normal exertion (PEM) 89.74% 79.39% Brain Fog 80.05% 72.33% Un-refreshing sleep 74.45% 55.28% Memory problems 54.07% 50.83% Fast, fluttering or pounding heartbeat 38.49% 47.11% Feeling of weakness 57.27% 43.61% Shortness of Breath 31.48% 40.44% Insomnia 47.29% 40.17% Headache or Migraine 45.32% 40.06% Postural Orthostatic Tachycardia (POTS) 41.04% 40.00% Lightheadedness or dizziness 42.64% 38.50% Sore/painful muscles 53.69% 34.11% Chest Pain 17.27% 31.39% Tinnitus 27.67% 31.11% Other digestive problems 44.00% 29.06% Numbness or tingling 25.36% 26.39% Joint pain or swelling 31.62% 24.44% Stiff or painful neck 38.45% 24.17% Cold or discolored hands/feet 28.89% 23.11% Balance problems or sense of room spinning 26.16% 22.56% Muscle twitches, spasms, or fasciculations 27.25% 20.39% External or internal tremors (\vibrations\) 20.71% 20.17% Nausea and/or Vomiting 25.55% 19.89% Sore throat, fever or flu-like symptoms 32.94% 19.72% Shooting, stabbing or burning pain 24.56% 19.06% Disordered taste / smell 9.04% 15.61%
November 19, 2025 at 4:21 AM
Reposted by Tom Kindlon
actionforme.bsky.social
🎥 Watch today's Westminster Hall Debate live on Parliament TV

Tabled by Tessa Munt MP, today's debate will focus on government support for people with ME. We will be sharing an overview of the debate after.

⏰ 4:30pm today, Wednesday 19th November

👉 Watch here: www.parliamentlive.tv/Commons
November 19, 2025 at 11:10 AM
Reposted by Tom Kindlon
darlingjeeling.bsky.social
Wow. They're actually sciencing why I feel so crap at last. Its only taken 25 years!

To gp that told me "well everyone feels tired and I don't believe in chronic fatigue" ...shove this up your tired arse.
tomkindlon.bsky.social Tom Kindlon @tomkindlon.bsky.social · 5d
New from the Maureen Hanson team in the US

Temporal dynamics of the plasma proteomic landscape reveals maladaptation in ME/CFS following exertion

www.mcponline.org/article/S153...

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

1/
Highlights • Plasma profiling of 7,288 proteins during post-exertional malaise in ME/CFS. • ME/CFS participants show sustained immune, metabolic, and neuromuscular dysregulation during post-exercise recovery. • Exertion disrupts T and B cell signaling, IL-17 pathways, and mitochondrial metabolism. • Protein signatures correlate with symptom severity and impaired exercise performance in ME/CFS subjects. • Sex-stratified analysis reveals distinct molecular responses, underscoring the importance of sex in ME/CFS pathophysiology.
November 19, 2025 at 2:37 AM
tomkindlon.bsky.social
2nd International Conference: "scientific and clinical advances in Myalgic Encephalomyelitis and Long Covid"

aliancamillionsmissing.org/2-conferenci...
youtu.be/5BP5Fi9tZ4o
youtu.be/y92DnoMKXuk

Screenshot from latest Science for ME weekly update

#MEcfs #LongCovid #CFS
Portugal 2025 International Long Covid Conference November 12–13, 2025, held in Porto, Portugal and online. To raise awareness, promote understanding, and stimulate dialogue among healthcare professionals, researchers, policymakers, patients, and advocates about ME/CFS, Long COVID, and other post-viral fatiguing illnesses. Speakers | Video Day 1 | Video Day 2 | Thread
November 19, 2025 at 2:07 AM
Reposted by Tom Kindlon
irishmecfsassoc.bsky.social
#Ireland

Our Christmas card page is now up irishmecfs.org/store

Wide selection: 18 packs with English or English & Irish verses

10% of gross amount goes to our research fund.

Shops don't get a cut so more goes to charity

Reposts welcomed

#MEcfs #PwME
All profits from the Christmas cards go to the Irish ME/Chronic Fatigue Syndrome Association (an all-volunteer organisation) with a cartoon image including a Santa Claus and presents
November 18, 2025 at 11:29 PM
Reposted by Tom Kindlon
m00psy.bsky.social
i have a lot of these symptoms and i promise you, you don’t want them if you can avoid them.

luckily, wearing an elastomeric mask like an N95 or a KN95 will go a long way toward that goal because #MasksWork!
tomkindlon.bsky.social Tom Kindlon @tomkindlon.bsky.social · 8d
(Repeat from a few months ago)
"Most Troubling Symptoms"

#MEcfs #LongCovid

1/
Most Troubling Symptoms ME/CFS Long COVID Fatigue or low energy 95.62% 88.28% Feeling worse after normal exertion (PEM) 89.74% 79.39% Brain Fog 80.05% 72.33% Un-refreshing sleep 74.45% 55.28% Memory problems 54.07% 50.83% Fast, fluttering or pounding heartbeat 38.49% 47.11% Feeling of weakness 57.27% 43.61% Shortness of Breath 31.48% 40.44% Insomnia 47.29% 40.17% Headache or Migraine 45.32% 40.06% Postural Orthostatic Tachycardia (POTS) 41.04% 40.00% Lightheadedness or dizziness 42.64% 38.50% Sore/painful muscles 53.69% 34.11% Chest Pain 17.27% 31.39% Tinnitus 27.67% 31.11% Other digestive problems 44.00% 29.06% Numbness or tingling 25.36% 26.39% Joint pain or swelling 31.62% 24.44% Stiff or painful neck 38.45% 24.17% Cold or discolored hands/feet 28.89% 23.11% Balance problems or sense of room spinning 26.16% 22.56% Muscle twitches, spasms, or fasciculations 27.25% 20.39% External or internal tremors (\vibrations\) 20.71% 20.17% Nausea and/or Vomiting 25.55% 19.89% Sore throat, fever or flu-like symptoms 32.94% 19.72% Shooting, stabbing or burning pain 24.56% 19.06% Disordered taste / smell 9.04% 15.61%
November 18, 2025 at 10:19 PM
Reposted by Tom Kindlon
0ut0fmany0ne.bsky.social
#CovidAwareness
Below are most common #Covid #Symptoms. Initial infection can be any of these. After #recovery, you may get more symptoms, even if you’re no longer “sick” and never get infected again! Covid hides in your body. Each #infection tics a few more boxes. That’s #LongCovid #MaskUp
tomkindlon.bsky.social Tom Kindlon @tomkindlon.bsky.social · 8d
(Repeat from a few months ago)
"Most Troubling Symptoms"

#MEcfs #LongCovid

1/
Most Troubling Symptoms ME/CFS Long COVID Fatigue or low energy 95.62% 88.28% Feeling worse after normal exertion (PEM) 89.74% 79.39% Brain Fog 80.05% 72.33% Un-refreshing sleep 74.45% 55.28% Memory problems 54.07% 50.83% Fast, fluttering or pounding heartbeat 38.49% 47.11% Feeling of weakness 57.27% 43.61% Shortness of Breath 31.48% 40.44% Insomnia 47.29% 40.17% Headache or Migraine 45.32% 40.06% Postural Orthostatic Tachycardia (POTS) 41.04% 40.00% Lightheadedness or dizziness 42.64% 38.50% Sore/painful muscles 53.69% 34.11% Chest Pain 17.27% 31.39% Tinnitus 27.67% 31.11% Other digestive problems 44.00% 29.06% Numbness or tingling 25.36% 26.39% Joint pain or swelling 31.62% 24.44% Stiff or painful neck 38.45% 24.17% Cold or discolored hands/feet 28.89% 23.11% Balance problems or sense of room spinning 26.16% 22.56% Muscle twitches, spasms, or fasciculations 27.25% 20.39% External or internal tremors (\vibrations\) 20.71% 20.17% Nausea and/or Vomiting 25.55% 19.89% Sore throat, fever or flu-like symptoms 32.94% 19.72% Shooting, stabbing or burning pain 24.56% 19.06% Disordered taste / smell 9.04% 15.61%
November 18, 2025 at 6:36 PM
Reposted by Tom Kindlon
abrokenbattery.bsky.social
Just a note to say: if you hear anything about #MECFS or #PEM and related on radio or TV, let me know and I’ll do my best to record it. I missed the Celebrity Catchphrase clip and don’t want to miss any more.

And if you have any old clips on VHS, I’ll try and get them digitised.
November 18, 2025 at 8:42 PM
tomkindlon.bsky.social
UK: Westminster Hall debate: #MEcfs
Wednesday 19 November at 4:30pm.
This debate will be led by Tessa Munt MP

Live
www.parliamentlive.tv/Event/Index/...

Replay
www.parliamentlive.tv/Search?Keywo...

References
commonslibrary.parliament.uk/research-bri...
whatson.parliament.uk/event/cal53589

#PwME
Parliamentlive.tv
Westminster Hall
www.parliamentlive.tv
November 18, 2025 at 6:06 PM
Reposted by Tom Kindlon
openmedf.bsky.social
Triple Giving November is underway! Until December 2, every gift is tripled—up to $500,000.

💰 $50 becomes $150
💰 $100 becomes $300
💰 $500 becomes $1,500

Your support moves #MECFS and #LongCOVID research forward. 👉 Explore OMF’s purpose, mission, and vision—and donate hope today: ow.ly/GEQB50XrLi8.
The image is a navy-blue graphic announcing a 3x match up to $500,000. It shows how donations triple: $50→$150, $100→$300, $250→$750, and $500→$1,500. The OMF logo and the tagline “Leading Research. Delivering Hope.” appear at the top.
November 14, 2025 at 3:53 PM
Reposted by Tom Kindlon
solveme.bsky.social
A recent study by the team at the Center for Infection and Immunity at Columbia Univ. describes how a hyperactive innate immune system can drive #MECFS -associated fatigue & #PEM, laying the groundwork for preventive treatments & advancing diagnostic tools. Read our summary here:
ow.ly/piKz50Xt44g
A white graphic with the Solve M.E. logo is superimposed on a background photo of a laboratory. It reads, "Solve Science Spotlight: Hyperstimulated Innate Immune System Can Drive ME/CFS Associated Fatigue and Post-Exertional Malaise. Read our Summary."
November 17, 2025 at 6:42 PM
tomkindlon.bsky.social
News Release 17-Nov-2025

From USA:

"10.3% had symptoms consistent with long COVID three months after infection, 81% of whom continued to experience persistent or intermittent symptoms a year later"

www.eurekalert.org/news-release...

#LongCovid #PASC #postcovid #postcovid19 #novid #COVID19 #COVID
News Release 17-Nov-2025 Study reveals insights into long COVID trajectories in adults New research led by Mass General Brigham followed more than 3,500 patients, finding that 10.3% had symptoms consistent with long COVID three months after infection, 81% of whom continued to experience persistent or intermittent symptoms a year later Peer-Reviewed Publication Brigham and Women's Hospital New research led by Mass General Brigham followed more than 3,500 patients, finding that 10.3% had symptoms consistent with long COVID three months after infection, 81% of whom continued to experience persistent or intermittent symptoms a year later Millions of patients have developed long COVID, a chronic condition that involves a range of symptoms, including fatigue, brain fog, dizziness, and palpitations that persist for at least three months after SARS-CoV-2 infection. In a new analysis of adult participants in the NIH funded Researching COVID to Enhance Recovery (RECOVER) Initiative, Mass General Brigham researchers identified eight different trajectories that long COVID can take, depending on severity, duration, and whether symptoms improve or worsen. Their findings are published in Nature Communications.
November 18, 2025 at 1:09 PM
Reposted by Tom Kindlon
lucibee.bsky.social
"Participants were asked to perform upper body exercise initially and bring-in the lower body exercises in week 3."
=GET by any other name.
November 18, 2025 at 11:55 AM