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25 posts · Last used 10d

Tom Kindlon @tomkindlon@disabled.social
· 1w ago
Boosted by @trending@homestead.social
'Nobody knows what to do': How Long COVID left Physics Girl searching for answers Article https://www.kpbs.org/news/arts-culture/2026/10/21/nobody-knows-what-to-do-how-long-covid-left-physics-girl-searching-for-answers Podcast https://www.kpbs.org/podcasts/the-finest/physics-girl-spent-her-life-explaining-science-then-science-couldnt-explain-her-illness Screenshot from latest Science for ME weekly update #LongCovid #MEcfs #PwME #CFS@mecfs@fedigroups.social @longcovid@fedigroups.social
kpbs.org

'Nobody knows what to do': How Long COVID left Physics Girl searching for answers

San Diego's Dianna Cowern, also known as Physics Girl, was one of the internet's most popular science communicators.  Long COVID left her bedbound and facing a medical mystery with life-and-death stakes.

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Tom Kindlon @tomkindlon@disabled.social
· 1w ago
Boosted by @trending@homestead.social
"What it’s like to be masking in 2026" "In which I answer the burning question everyone is asking – 'why are you still masking in 2026'?" https://nannyogg63.substack.com/p/what-its-like-to-be-masking-in-2026 She has ME/CFS and asthma herself but it's a general article #masking #MaskUp #Covidisairborne #CovidIsNotOver @mecfs@fedigroups.social @longcovid@fedigroups.social #MEcfs #LongCovid #PwME #CFS @NoVID@chirp.social #novid #chronicillness
What it’s like to be masking in 2026
nannyogg63.substack.com

What it’s like to be masking in 2026

In which I answer the burning question everyone is asking – “why are you still masking in 2026”?

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Tom Kindlon @tomkindlon@disabled.social
· 1mo ago
Boosted by @trending@homestead.social
I was one of a number of patient scientists and advocates who was interviewed for this sympathetic, open access paper "Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis" https://www.sciencedirect.com/science/article/pii/S003936812600110X?via%3Dihub #MEcfs #PwME #epatient #epatients #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs@fedigroups.social
sciencedirect.com
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Tom Kindlon @tomkindlon@disabled.social
· 1mo ago
Boosted by @trending@homestead.social
"I would be here if I could" travelling art installation by artist Alison Larkman https://www.iwouldbehereificould.com/ https://meassociation.org.uk/2026/09/i-would-be-here-if-i-could-me-association-trustee-attends-mirrorbox-event-at-the-royal-opera-house/ Screenshot from latest Science for ME weekly update #MEcfs #LongCovid #PwME #CFS@mecfs@fedigroups.social @longcovid@fedigroups.social
I Would Be Here If I Could... – Giving voice and presence to people with M.E. and Long Covid
iwouldbehereificould.com

I Would Be Here If I Could... – Giving voice and presence to people with M.E. and Long Covid

The largest collaborative art project in the UK co-curated with people with M.E. and Long Covid, giving voice and presence to those who are now absent from the everyday.

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Tom Kindlon @tomkindlon@disabled.social
· 1mo ago
Boosted by @trending@homestead.social
Zoe Sirotiak – a person with ME/CFS, researcher, and physical therapist – has published a paper on how the societal expectation for people who are unwell to “get better” can create harm for people with chronic diseases, like ME/CFS. Read more: https://bit.ly/4irwxOp #mecfs #cfs #pwme @mecfs@fedigroups.social
bit.ly

How societal expectations of recovery can lead to harm for people with ME/CFS.

In an article, published in the journal ‘Disability & Society’, Zoe Sirotiak – a person with ME/CFS, researcher, and physical therapist – reflects on “the myth of recovery”, and how the societal expectation for people who are unwell to “get better” can create harm for people with chronic diseases, like ME/CFS.   The author uses…

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Tom Kindlon @tomkindlon@disabled.social
· 2mo ago
🧵 ME Research UK We are deeply appreciative that the community has shared their experiences with us. Those detailing the devastation of cognitive dysfunction in ME/CFS are both moving and profoundly informative. https://www.meresearch.org.uk/the-experience-and-impact-of-cognitive-dysfunction-in-me-cfs/ #MEcfs #PwME #CFS #BrainFog @mecfs@fedigroups.social 1/
meresearch.org.uk

The experience and impact of cognitive dysfunction in ME/CFS

The sheer devastation of cognitive dysfunction in ME/CFS is very apparent from the overwhelming number of responses to our recent Symptom Saturday survey. This symptom can rip through careers, hobbies, and relationships. We are deeply grateful for the insights shared; and whilst it is not possible to feature every response in a single article, all…

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Tom Kindlon @tomkindlon@disabled.social
· 2mo ago
Boosted by @trending@homestead.social
News Release 2-Sep-2026 Scientists uncover shared biology behind profound fatigue in five major illnesses https://www.eurekalert.org/news-releases/1142275 Paper: https://link.springer.com/article/10.1186/s12967-026-08874-9 UK Times article (paywalled) https://www.thetimes.com/uk/healthcare/article/me-long-covid-chronic-fatigue-illnesses-x6rm6w5wf #MEcfs #LongCovid #PwME #CFS @mecfs@fedigroups.social @longcovid@fedigroups.social 1/
Scientists uncover shared biology behind profound fatigue in five major illnesses
eurekalert.org

Scientists uncover shared biology behind profound fatigue in five major illnesses

New research reveals a shared biology behind profound fatigue in five major illnesses - including long Covid and PTSD. A new paper shows striking biological similarities between five major illnesses which until now have largely been viewed as separate disorders. The findings suggest that chronic fatigue syndrome (also known as ME), long Covid, post-traumatic stress disorder (PTSD), rheumatoid arthritis and multiple sclerosis (MS) may be driven by common underlying mechanisms. This is despite

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Tom Kindlon @tomkindlon@disabled.social
· 2mo ago
Boosted by @trending@homestead.social
“The Relentless Work of Being Sick” “A new book examines the labor of getting chronic illness diagnosed and treated—for those lucky enough to get care.” https://www.motherjones.com/media/2026/09/rogers-sick-work-duke-press-qa-interview-chronic-illness/ #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs@fedigroups.social #spoonie
The relentless work of being sick
motherjones.com

The relentless work of being sick

A new book examines the labor of getting chronic illness diagnosed and treated—for those lucky enough to get care.

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Aileen22 @Aileen22@mastodon.social
· 2mo ago
Replying to
gefüttert und es ist quasi runtergebrochen ein Test, der Leute rausfiltern soll, die ihre Symptome übertreiben, wenn ich das richtig verstanden habe. Ich habe aber gar keine seelische Erkrankung. Was sollte der Test? Davon ab hat die DRV seit vielen Jahren nicht angezweifelt, dass ich krank bin? Die Ärztin hatte kaum Unterlagen, auch nicht von der Diagnose vor etlichen Jahren aus dem Erstantrag, nur das aus dem Widerspruch. ??? #cfs
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Tom Kindlon @tomkindlon@disabled.social
· 2mo ago
Using advanced MRI techniques, ME Research UK-funded researchers at Griffith University have detected subtle alterations in brain tissue microstructure in ME/CFS & long COVID, supporting the idea that the illnesses share underlying neurological features https://bit.ly/4i8mYn9 #MEcfs #LongCovid #CFS #PwME @mecfs@fedigroups.social @longcovid@fedigroups.social
bit.ly

Brain tissue changes in ME/CFS and long COVID

Researchers Tanoj Bahadur Singh, Sonya Marshall-Gradisnik, Leighton Barnden, Natalie Eaton-Fitch, Tuong Hieu Huynh, Maira Inderyas, Kiran Thapaliya Institution National Center for Neuroimmunology and Emerging Diseases (NCNED), Griffith University, Gold Coast, Queensland, Australia Publication Frontiers in Medicine – Translational Medicine, 2026 July 17; 13:1824498 Funding This research was funded by ME Research UK (SCIO Charity Number…

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Tom Kindlon @tomkindlon@disabled.social
· 2mo ago
🧵 ME Research UK: Careers, relationships, family life, hobbies, basic tasks – PEM can tear through it all. The sheer symptom burden and ripple effects can impact mental health. We urge anyone in distress to consider reaching out to appropriate organisations e.g. Mind (https://mind.org.uk) #MEcfs #PwME #CFS @mecfs@fedigroups.social 1/
We're Mind, the mental health charity | Mind
mind.org.uk

We're Mind, the mental health charity | Mind

We're Mind, the mental health charity. We're here to make sure no one has to face a mental health problem alone.

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Tom Kindlon @tomkindlon@disabled.social
· 2mo ago
Replying to
2/ Impact of PEM in ME/CFS #PEM #MEcfs #PwME #CFS #MyalgicEncephalomyelitis #longcovid@mecfs@fedigroups.social
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Tom Kindlon @tomkindlon@disabled.social
· 3mo ago
Boosted by @trending@homestead.social
"Glandular fever*’s not just the ‘kissing disease’...The risk of chronic fatigue [syndrome] means the ‘kissing disease’ should not be downplayed. Experts say there can be long-term consequences" https://www.theaustralian.com.au/health/medical/glandular-fevers-not-just-the-kissing-disease-as-kaylee-mckeown-found-out/news-story/c97eaf0b87503ffc9db4a4abe0aeee6d?amp Archive https://archive.is/4Tf0p *aka Mono #MEcfs #PwME #CFS #ME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs@fedigroups.social
theaustralian.com.au
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Tom Kindlon @tomkindlon@disabled.social
· 3mo ago
Proposed Framework for Personalized Severity Assessment in ME/CFS to Capture Variation in ME/CFS Severity and Life Impairment across Patients and Time (2024) https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2024.1369295/full #MEcfs #CFS #PwME #SevereME #SevereMECFS #SevereCFS #VerySevereME @mecfs@fedigroups.social
Frontiers | Longitudinal cytokine and multi-modal health data of an extremely severe ME/CFS patient with HSD reveals insights into immunopathology, and disease severity
frontiersin.org

Frontiers | Longitudinal cytokine and multi-modal health data of an extremely severe ME/CFS patient with HSD reveals insights into immunopathology, and disease severity

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) presents significant challenges in patient care due to its intricate multisystem nature, comorbid...

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Tom Kindlon @tomkindlon@disabled.social
· 4mo ago
Biomarkers of post-acute infection syndrome: a systematic literature review https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2026.1741761/full "Overall, the total risk of bias was frequently classified as high, whereas only a limited number of studies demonstrated a low or moderate overall risk of bias” #LongCovid #mecfs #cfs @mecfs@fedigroups.social @longcovid@fedigroups.social
Frontiers | Biomarkers of post-acute infection syndrome: a systematic literature review
frontiersin.org

Frontiers | Biomarkers of post-acute infection syndrome: a systematic literature review

BackgroundPost-acute infection syndrome (PAIS) remained underrecognized before the COVID-19 pandemic, which further increased exposure by introducing a novel...

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