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tomkindlon.bsky.social
Tom Kindlon
@tomkindlon.bsky.social
6.8K followers 200 following 6.8K 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 · 8d
"How to Help With ME/CFS and Long COVID Disability Claims"

www.medscape.com/viewarticle/...

Lots of good tips to deal with insurance companies.

Government schemes can vary by country but people in most countries can probably pick up useful tips from this also.

#MEcfs #LongCovid #CFS #PwME
Medscape logo Medscape Medical News Conference News IACFS/ME 2025 How to Help With ME/CFS and Long COVID Disability Claims Miriam E. Tucker November 26, 2025 Detailed notes, objective testing, and legal assistance if necessary are the keys to obtaining disability benefits for patients who are unable to work due to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) or long COVID.
tomkindlon.bsky.social
SARS-CoV-2 Spike Protein Amyloid Fibrils Impair Fibrin Formation and Fibrinolysis

pubs.acs.org/doi/full/10....

Screenshot from latest Science for ME weekly update

#SARSCoV2 #LongCovid #PASC
SARS-CoV-2 Spike Protein Amyloid Fibrils Impair Fibrin Formation and Fibrinolysis — Henrik Westman et al. "Despite the limitations of the experimental setup with synthetic fibrils, our data do suggest that some, but not all, Spike-derived amyloid fibrils impacted fibrin folding and assembly and thereby cause impaired plasmin-mediated fibrinolysis."
December 5, 2025 at 2:15 AM
tomkindlon.bsky.social
From Austria:

Postural orthostatic tachycardia syndrome is the most frequent cardiovascular autonomic disorder following COVID-19 infection or vaccination

link.springer.com/article/10.1...

Screenshot from latest Science for ME weekly update

#POTS #LongCovid
Postural orthostatic tachycardia syndrome is the most frequent cardiovascular autonomic disorder following COVID-19 infection or vaccination — Leys et al. "Here, we aimed to investigate the type and frequency of newly diagnosed and exacerbated CAD following COVID-19 infection or vaccination in a large case series referred to the Innsbruck Dysautonomia Center."
December 5, 2025 at 2:05 AM
tomkindlon.bsky.social
From Germany

Post-COVID Fatigue Is Associated With Reduced Cortical Thickness After Hospitalization

onlinelibrary.wiley.com/doi/10.1002/...

Screenshot from latest Science for ME weekly update

#NeuroPASC #LongCovid #PASC #COVIDBrain
Post-COVID Fatigue Is Associated With Reduced Cortical Thickness After Hospitalization — Tim J. Hartung et al. "MRI and neuropsychological testing were performed at 3 months after discharge." "Higher acute COVID-19 severity was associated with reduced cortical thickness, particularly in the olfactory system." "reduced cortical thickness of the temporal poles and the anterior and posterior cingulate gyrus was associated with more severe post-acute fatigue."
December 5, 2025 at 1:54 AM
tomkindlon.bsky.social
From Australia:

Persistent lung & vascular inflammation in mild to moderate COVID-19 survivors detected by ¹⁸F-FDG PET/CT: A quantitative imaging study with implications for cardiovascular risk

link.springer.com/article/10.1...

Screenshot from Science for ME update

#auscovid19 #LongCovid #PASC
Persistent lung and vascular inflammation in mild to moderate COVID-19 survivors detected by ¹⁸F-FDG PET/CT: A quantitative imaging study with implications for cardiovascular risk — Verma et al. "this new analysis demonstrates strong positive correlations between lung and vascular inflammation, suggesting that the ongoing lung inflammatory response may reflect broader systemic inflammatory activity and could represent a potential mechanism underlying the increased CV risk reported post-COVID."
December 5, 2025 at 1:47 AM
Reposted by Tom Kindlon
marushka-t.bsky.social
More news on the #MECFS front that also has implications for #longCOVID.
tomkindlon.bsky.social Tom Kindlon @tomkindlon.bsky.social · 14h
UK press release:

Groundbreaking myalgic encephalomyelitis study identifies over 250 core genes, shared biology with #longCOVID, and dozens of drug repurposing opportunities

precisionlife.com/news-and-eve...

Paper:
www.medrxiv.org/content/10.6...

#MEcfs #CFS #PwME @precisionlife.bsky.social
PRESS RELEASE Groundbreaking myalgic encephalomyelitis study identifies over 250 core genes, shared biology with long COVID, and dozens of drug repurposing opportunities The study reinforces that ME is a complex multisystemic condition with a clear genetic basis and lays the foundation for future clinical trials that could be faster to recruit and more likely to succeed Read our FAQs OXFORD, UK – 4 December 2025 – PrecisionLife today announced new findings from the most detailed genetic analysis of myalgic encephalomyelitis (ME, also known as ME/CFS) ever conducted, revealing more than 250 core genes associated with the disease, including 76 genes linked with long COVID, and uncovering dozens of drug repurposing opportunities supported by genetic biomarker tests, offering potential for faster and lower-risk routes to developing targeted treatments. The study, now available as a pre-print and submitted for peer review, applied PrecisionLife's AI-led combinatorial analytics platform to analyze genomic data from two DecodeME cohorts together with UK Biobank to confirm reproducibility of results across three independent datasets. The analysis identified 7,555 genetic variants (including the 8 identified by the recent DecodeME GWAS study ), that were consistently associated with increased disease risk in three different populations.
December 4, 2025 at 7:45 PM
Reposted by Tom Kindlon
irishmecfsassoc.bsky.social
From Tom Kindlon @tomkindlon.bsky.social :

We had a good chat yesterday. Again after 3 PM, when the carvery closed, we had the room to ourselves.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Photo of 2 men standing and one woman sitting
December 4, 2025 at 8:00 PM
Reposted by Tom Kindlon
mecfsresearch.bsky.social
During this reflective holiday season, we call on everyone to pull together.
Just €5 a month can make a real difference: many small contributions create a strong foundation for #MECFS & #LongCovid research – for >1.5 million people affected. 🎄🎅 👉 www.mecfs-research.org/spendenabo
November 30, 2025 at 10:45 AM
Reposted by Tom Kindlon
mecfsresearch.bsky.social
A huge thank you to the scouts from Essen-Horst! 🙌
Their charity run raised an incredible €21,100 for #mecfsf="/hashtag/mecfsresearch" class="hover:underline text-blue-600 dark:text-sky-400 no-card-link">#mecfsresearch .
You can start your own campaign too – every initiative counts!
Info: 👉 https://mecfs-research.org/en/support/
#research #LongCovid #PostCovid #mecfs
December 2, 2025 at 4:50 PM
tomkindlon.bsky.social
“IT'S GIVING TUESDAY! Your chance to donate what you're able (or help in other ways) to organizations supporting #MECFS & Long-COVID & have your donation doubled or tripled! These organizations do amazing work in research, advocacy & supporting patients”

livewithcfs.blogspot.com/2024/12/givi...
1/
Giving Tuesday 2024: Help ME/CFS and Long-COVID Patients
Treatments, research & inspiration to live your best life with myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) & Lyme & tick infections.
livewithcfs.blogspot.com
December 4, 2025 at 4:32 PM
Reposted by Tom Kindlon
irishmecfsassoc.bsky.social
‪3/‬

‪Some more of our Christmas card sets‬

‪#MEcfs #PwME‬ #MEcfs
2 Christmas card images
December 4, 2025 at 2:20 PM
Reposted by Tom Kindlon
erictopol.bsky.social
A new review of post-infection syndromes, including #LongCovid, and its diverse immunologic manifestations www.cell.com/trends/immun... by @virusesimmunity.bsky.social and colleagues
December 4, 2025 at 3:47 PM
Reposted by Tom Kindlon
davetuller1.bsky.social
In recent @jamanetworkopen.com exercise study with clinically insiginficant findings, all participants scored way below healthy adults--a major fact overlooked by the paper. Also, @thesicktimes.org reports on exercise trials. virology.ws/2025/11/25/t...
Trial By Error: JAMA Touts Long COVID Exercise Trial with Clinically Insignificant Results; Most LC Exercise Trials Ignore PEM, Per Sick Times | Virology Blog
By David Tuller, DrPH In its current “Medical News in Brief” section, JAMA is touting and amplifying the questionable claims of a flawed trial to treat or p ...
virology.ws
November 26, 2025 at 7:33 AM
Reposted by Tom Kindlon
meactnet.bsky.social
We’re discussing Grief, Stress, and Connection During the Holidays at the #MEAction Partner Caregiver support group meeting this Sunday, Dec. 7, from 12–1 p.m. PST / 3–4 p.m. EST / 8–9 p.m.

All caregivers are welcome to join

www.meaction.net/event-detail...
#MEAction Partner Caregiver Support Call | #MEAction
The Partner Caregivers Support Group invites caregivers who are spouses, partners, or significant others of people with ME/CFS or Long COVID (and associated conditions) to join us to connect, share, a...
www.meaction.net
December 3, 2025 at 10:02 PM
tomkindlon.bsky.social
UK press release:

Groundbreaking myalgic encephalomyelitis study identifies over 250 core genes, shared biology with #longCOVID, and dozens of drug repurposing opportunities

precisionlife.com/news-and-eve...

Paper:
www.medrxiv.org/content/10.6...

#MEcfs #CFS #PwME @precisionlife.bsky.social
PRESS RELEASE Groundbreaking myalgic encephalomyelitis study identifies over 250 core genes, shared biology with long COVID, and dozens of drug repurposing opportunities The study reinforces that ME is a complex multisystemic condition with a clear genetic basis and lays the foundation for future clinical trials that could be faster to recruit and more likely to succeed Read our FAQs OXFORD, UK – 4 December 2025 – PrecisionLife today announced new findings from the most detailed genetic analysis of myalgic encephalomyelitis (ME, also known as ME/CFS) ever conducted, revealing more than 250 core genes associated with the disease, including 76 genes linked with long COVID, and uncovering dozens of drug repurposing opportunities supported by genetic biomarker tests, offering potential for faster and lower-risk routes to developing targeted treatments. The study, now available as a pre-print and submitted for peer review, applied PrecisionLife's AI-led combinatorial analytics platform to analyze genomic data from two DecodeME cohorts together with UK Biobank to confirm reproducibility of results across three independent datasets. The analysis identified 7,555 genetic variants (including the 8 identified by the recent DecodeME GWAS study ), that were consistently associated with increased disease risk in three different populations.
December 4, 2025 at 1:27 PM
Reposted by Tom Kindlon
cgatist.bsky.social
Delighted how @precisionlife.bsky.social and @actionforme.bsky.social et al used consented @decodemestudy.bsky.social data to
-replicate #MEcfs genetic signal &
-show its shared/distinct genetics with Long Covid.
Next: replicate ME/CFS subtypes w/ targeted therapies
www.medrxiv.org/content/10.6...
Identification of Novel Reproducible Combinatorial Genetic Risk Factors for Myalgic Encephalomyelitis in the DecodeME Patient Cohort and Commonalities with Long COVID
Background: Myalgic encephalomyelitis (also known as ME/CFS or simply ME) has severely impacted the lives of tens of millions of people globally, but the disease currently has no accurate diagnostic t...
www.medrxiv.org
December 4, 2025 at 8:13 AM
Reposted by Tom Kindlon
stacyatthebosco.bsky.social
Feeling this deeply. And the invisible ones come with their own array of challenges and questions.
tomkindlon.bsky.social Tom Kindlon @tomkindlon.bsky.social · 1d
On International Day of People with #Disabilities, please note some disabilities are invisible

#Disability #invisibleillness #disabled #disabledpeople #IDPD #IDPD2025 #IDPD25
5 stick images of people. In the first 4, the person has a disability aid but the fifth one does not. Text: some disabilities look like this some like this
December 4, 2025 at 2:37 AM
tomkindlon.bsky.social
From Belgium:

"These data demonstrate that IgGs from long COVID patients bind to peripheral sensory neurons and induce pain-related symptoms in mice."

www.biorxiv.org/content/10.1...

Screenshot from latest Science for ME weekly update

#PostCovidSyndrome #LongCovid #PASC
Pathogenic IgG from long COVID patients with neurological sequelae triggers sensitive but not cognitive impairments upon transfer into mice — Mignolet et al. "These data demonstrate that IgGs from long COVID patients bind to peripheral sensory neurons and induce pain-related symptoms in mice."
December 4, 2025 at 2:46 AM
tomkindlon.bsky.social
Autoantibodies mediate pain and sensory dysfunction in post-COVID syndrome

www.researchsquare.com/article/rs-7...

Screenshot from latest Science for ME weekly update

#PostCovidSyndrome #LongCovid #PASC
Autoantibodies mediate pain and sensory dysfunction in post-COVID syndrome — Stuart Bevan et al. "Here we demonstrate that PCS patients with widespread pain share hyperalgesic sensory phenotypes and spontaneous activity in peripheral nociceptive fibres. Importantly, antibodies from these patients are sufficient to induce painful hypersensitivities and small-fibre neuropathy when administered to mice."
December 4, 2025 at 2:27 AM
tomkindlon.bsky.social
From Italy

Extracellular vesicles from long COVID patients promote RUNX2-mediated cellular stress via dysregulated miR-204 and p53 pathway activation

biosignaling.biomedcentral.com/articles/10....

Screenshot from latest Science for ME weekly update

#LongCovid #PASC
Extracellular vesicles from long COVID patients promote RUNX2-mediated cellular stress via dysregulated miR-204 and p53 pathway activation — Dalle Carbonare et al. "Our study demonstrates that LC-EVs carry a distinct molecular signature capable of inducing significant cellular alterations […] enriched in markers of platelet activation and contribute to a pro-thrombotic environment" "Upon entering target cells, LC-EVs promote the expression of RUNX2 and activate stress-related pathways involving p53, p21, and Sestrins, indicating a response to cellular stress […] showing impaired mitochondrial adaptability under metabolic strain, potentially explaining fatigue and exercise intolerance in LC patients."
December 4, 2025 at 2:07 AM
Reposted by Tom Kindlon
melissajd.bsky.social
I am disabled by an "invisible illness," Myalgic Encephalomyelitis. There is no treatment or cure. #PwME
tomkindlon.bsky.social Tom Kindlon @tomkindlon.bsky.social · 1d
On International Day of People with #Disabilities, please note some disabilities are invisible

#Disability #invisibleillness #disabled #disabledpeople #IDPD #IDPD2025 #IDPD25
5 stick images of people. In the first 4, the person has a disability aid but the fifth one does not. Text: some disabilities look like this some like this
December 3, 2025 at 11:56 PM
Reposted by Tom Kindlon
stoutheartstudio.com
Sometimes I need a cane. Most times I don’t, I just hurt a lot and get tired easily. Sometimes I have trouble forming complete sentences.

It’s still enough that a full time job would probably put me in a position of worsening health.

Don’t assume what you don’t know.
tomkindlon.bsky.social Tom Kindlon @tomkindlon.bsky.social · 1d
On International Day of People with #Disabilities, please note some disabilities are invisible

#Disability #invisibleillness #disabled #disabledpeople #IDPD #IDPD2025 #IDPD25
5 stick images of people. In the first 4, the person has a disability aid but the fifth one does not. Text: some disabilities look like this some like this
December 3, 2025 at 10:25 PM
tomkindlon.bsky.social
On International Day of People with #Disabilities, please note some disabilities are invisible

#Disability #invisibleillness #disabled #disabledpeople #IDPD #IDPD2025 #IDPD25
5 stick images of people. In the first 4, the person has a disability aid but the fifth one does not. Text: some disabilities look like this some like this
December 3, 2025 at 8:08 PM
Reposted by Tom Kindlon
irishmecfsassoc.bsky.social
‪2/‬
‪Some more of our Christmas card sets‬

‪#MEcfs #CFS‬ #PwME
6 Christmas card images
December 3, 2025 at 7:31 PM
Reposted by Tom Kindlon
batemanhornecenter.bsky.social
The holidays can be overwhelming, you don’t have to navigate them alone.

BHC’s December online events offer a supportive space to talk through challenges, learn pacing strategies, and connect with others who truly understand.

💙 Register at https://bit.ly/4npZ4Ud
Upcoming events in December 2025: - Dec 9, 1:00 pm MST, Support Group on managing holidays with chronic illness. - Dec 10, 10:00 am MST, 'Coffee with a Clinician' on pacing for holidays. - Dec 16, 1:00 pm MST, Support Group on freedom from thinking traps amidst chronic disease. Visit BatemanHorneCenter.org/Events for more.
December 1, 2025 at 6:19 PM
Reposted by Tom Kindlon
solveme.bsky.social
Celebrate radical generosity today, Giving Tuesday, with a gift to Solve! With our $321,000 matching challenge, your gift today will be matched – meaning double the amount of funding for ME/CFS and Long Covid research!

ow.ly/cWbq50XAqnk
teal graphic with Giving Tuesday and Solve M.E. logos reads: Breaking News! Double Your Impact $321,000 by December 31 Matching challenge Solve M.E. Moving Science Forward
December 2, 2025 at 7:38 PM