Snow Leopard
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snowypanthera.bsky.social
Snow Leopard
@snowypanthera.bsky.social
110 followers 200 following 210 posts
Animagus. Hearty but not hale. Celebrant of beautiful action. Likes bicycles. Note: The only time I post with my real name is in scientific journals. Kaurna Country. She/Her.
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physiosforme.bsky.social
🚨New survey alert 🚨

The experiences of healthcare professionals living with Long COVID (with PEM) and/or ME

All information can be found on the landing page here.

www.physiosforme.com/hcpwithmesur...
hcps with ME survey | Physiosforme
www.physiosforme.com
November 18, 2025 at 7:02 PM
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mecfsskeptic.bsky.social
1) The results of RECOVER-NEURO are in!

It tested:
- computerized cognitive training
- cognitive-behavioral rehabilitation
- transcranial direct current stimulation

but no intervention showed significant improvement compared to a control group that did video puzzles and games.
November 11, 2025 at 9:25 AM
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tomkindlon.bsky.social
🧵
Contested and neglected: Social and medical marginalization in severe Chronic Fatigue Syndrome

www.sciencedirect.com/science/arti...

"Severe ME/CFS patients face deep social, medical, and structural exclusion."

#SevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

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Highlights • Severe ME/CFS patients face deep social, medical, and structural exclusion. • Delegitimation of illness leads to isolation, distress, and denied support. • Gendered stigma shapes how women's pain is dismissed in health care. • Twitter (now X) offers access to the voices of an otherwise unreachable patient group. • This study urges reforms in care, disability access, and illness recognition.
November 11, 2025 at 12:47 PM
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georgemonbiot.bsky.social
1. This is a thread on freedom, and how easy it is to lose.

Over the past 2,000 years in Europe, there have been few periods and places of freedom. For much of the time we lived under highly oppressive tyrannies of various kinds, whether small or grand, local or imperial, secular or religious.🧵
November 7, 2025 at 6:35 AM
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abrokenbattery.bsky.social
Clip from @davetuller1.bsky.social’s interview with Professor @bmhughes.bsky.social about his new book, Psychology’s Quiet Conservatism. He explains how the psychogenic framing of illnesses like #MECFS and #LongCovid has shaped care and policy, often as a way to cut costs.
November 5, 2025 at 7:59 AM
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mecfsskeptic.bsky.social
1) Slide from Maya Dusenbery's presentation at the Canadian ME/CFS Conference yesterday.

She is the author of 'Doing Harm', a book that explores how women’s health has long been overlooked and dismissed within the medical system.
November 5, 2025 at 8:22 AM
snowypanthera.bsky.social
Something something Zebras
mecfsskeptic.bsky.social ME/CFS Science @mecfsskeptic.bsky.social · 23d
1) Interesting study in the New England Journal of Medicine.

1% to 3% of patients with multiple sclerosis and inflammatory bowel disease were likely misdiagnosed as they actually had a monogenic rare disease.
October 29, 2025 at 9:22 AM
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mecfsskeptic.bsky.social
1) Reading this review on fatigue in other diseases: it's notable how it manifests early in the illness (often before diagnosis), how it's often poorly explained (correlates poorly with pathology markers), yet is reported to be one of the most disabling symptoms.
October 29, 2025 at 8:23 AM
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strandjunker.com
Just a thought: How about we stop shaming the poor for buying things that may not be essential, and start shaming the rich for making a profit off things that are essential?
October 23, 2025 at 8:19 PM
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mecfsskeptic.bsky.social
4) Link to the paper:

Hofmann et al. Sex-related cardiometabolic differences in ME/CFS patients.
sciencedirect.com/science/arti...
Sex-related cardiometabolic differences in ME/CFS patients
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic, debilitating, and multisystem disease that affects more females than males. …
sciencedirect.com
October 24, 2025 at 9:18 AM
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mecfsskeptic.bsky.social
1) New study reports that ME/CFS patients have increased levels of advanced oxidation protein products (AOPP) in the blood, a marker of oxidative stress.

This was particularly the case for male ME/CFS patients who had higher AOPP levels than females.
October 24, 2025 at 9:18 AM
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gregoryburke.bsky.social
www.counterpunch.org/2025/09/05/r...
RFK Jr Doesn't Care About Long COVID
Additional research suggests that Long COVID may be just the tip of the iceberg. Studies of large patient cohorts have found that COVID infection significantly increases the risk of cardiovascular com...
www.counterpunch.org
September 6, 2025 at 11:30 PM
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ahimsa-pdx.disabled.social.ap.brid.gy
"Secretary Kennedy Doesn’t Care About Long COVID Patients"

https://cepr.net/publications/secretary-kennedy-doesnt-care-about-long-covid-patients/

"Kennedy has dismantled not only federal COVID prevention programs but also much of the research infrastructure […]

[Original post on disabled.social]
Long COVID is a chronic, multisystem condition that follows COVID‑19 infection. It can arise regardless of the severity of the initial illness and is characterized by symptoms that may persist or emerge weeks to months after the acute phase of infection. Researchers have drawn parallels between Long COVID’s impact and that of a stroke or Parkinson’s. Long COVID also shares similarities with other post-viral syndromes such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which similarly involve long-term fatigue and autonomic dysfunction. Studies have shown that both Long COVID and ME/CFS can lead to quality-of-life impairments that outstrip many advanced cancers.
September 3, 2025 at 2:39 AM
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pjavidan.bsky.social
My chapter examines the profound socio-economic impacts of Long COVID, particularly in education and employment, from the perspective of systemic inequities and social determinants of health, and exposes the harms of pandemic non-interventionism.
dalupton.bsky.social Prof Deborah Lupton, MPH PhD @dalupton.bsky.social · 29d
Now published! My edited book ‘Long COVID and Society’ - my introduction is free to read for everyone. Download from the link below and check out the others chapters too (Chapter 14, about LC children and families, is also open access)

link.springer.com/book/10.1007...
Long COVID and Society
This is the first book to bring together academics and activists living with Long COVID to explore the social impacts of the new complex chronic condition.
link.springer.com
October 23, 2025 at 12:14 AM
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bettycjung.bsky.social
Donald Trump’s AI Video Is a Psychosexual Confession
drstaceypatton1865.substack.com/p/donald-tru...
Donald Trump’s AI Video Is a Psychosexual Confession
This Substack is reader-supported.
drstaceypatton1865.substack.com
October 23, 2025 at 2:53 AM
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johnthejack.bsky.social
From

(£) www.thetimes.com/comment/colu...

Be interesting to hear from some prominent people who live there on this subject. Do they employ staff? On what terms?
Text: Gulf apart Listening to a recent exile describe the ease and comfort of life in Dubai, I understood what must be a large part of its appeal. It’s not so much the low taxes, the shopping or the relentless sun that attract people to what is, in effect, a large housing estate in the desert: it’s the inequality. In the Gulf, domestic servants — mostly migrant labourers from India and Pakistan — are available for as little as £200 a month. The servant’s employer sponsors their visa, so if they complain or leave their job they risk being deported. In Britain, democracy, prosperity, minimum-wage requirements and human rights legislation ensure that servants haven’t been so cheap or so oppressed for a hundred years or more. But in Dubai employers are not so constrained. So Britons who set up house in the Gulf can enjoy the benefits of the 19th century without the disadvantages of disease and bad plumbing.
October 20, 2025 at 10:55 AM
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gtconway.bsky.social
October 19, 2025 at 1:06 PM
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tomkindlon.bsky.social
Seeing is Believing:Identifying the “Ideal Manifestation of Hidden Disability” in Ontario’s & Quebec’s Social Benefits Tribunals

digitalcommons.schulichlaw.dal.ca/dlj/vol48/is...

"advocating for a shift away from entrenched stereotypes towards a more inclusive & equitable system"
#MEcfs #CFS #PwME
Seeing is Believing: Identifying the “Ideal Manifestation of Hidden Disability” in Ontario’s and Quebec’s Social Benefits Tribunals Authors Pascale Malenfant, McGill University Faculty of Law Keywords disability, hidden disability, health law, social benefits, administrative law, ideal victim Abstract The phenomenon of disability skepticism, especially in relation to “hidden” disabilities like chronic fatigue syndrome (CFS), has fostered a culture of doubt among medical, legal, and public entities. This paper explores the intersection of such skepticism with the social benefits adjudication processes in Ontario and Quebec. In drawing parallels to feminist critiques of the “ideal victim” in sexual assault cases, it argues that the tribunals’ biased framework for believability is based on a claimant’s conformity to stereotypical expectations of what an “ideal” claimant with a hidden disability looks like. By comparatively examining 10 years worth of Ontario and Quebec tribunal decisions featuring claimants with CFS, this study highlights how those with hidden disabilities are evaluated based on visible manifestations of their disability/emotion, medical/expert evidence, and the apparent credibility of themselves or others as witnesses. This research not only addresses a significant gap in the literature but also calls for reforms in the legal treatment of hidden disabilities, advocating for a shift away from entrenched stereotypes towards a more inclusive and equitable system.
October 16, 2025 at 12:41 PM
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rippermd41.bsky.social
Most people aren’t asking you mask at all times.

They ask that you mask in essential places: public transit, hospitals, doctors’ offices, pharmacies etc.

Places high risk people can’t avoid.

But if you hate wearing masks? Then advocate for indoor air quality: ventilation, filtration, etc.
jamellebouie.net jamelle @jamellebouie.net · Oct 14
yeah, i think a commitment to public health obligates you to get vaccinated and, when you are sick, do what you can to avoid spreading that to other people. the demand that one mask at all times in public spaces is, i think, unreasonable.
October 14, 2025 at 4:37 PM
snowypanthera.bsky.social
ME/CFS was snubbed again, it shows they aren't really interested in measuring a complete picture of disease burden across the world.

www.healthdata.org/research-ana...
Burden of 375 diseases and injuries, risk-attributable burden of 88 risk factors, and healthy life expectancy in 204 countries and territories, including 660 subnational locations, 1990–2023: a system...
This paper presents GBD 2023 findings on disease and injury burden and risk-attributable health loss, offering a global audit of the state of world health to inform public health priorities.
www.healthdata.org
October 13, 2025 at 11:17 AM
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johnthejack.bsky.social
Letter in Times today
Text: Diversity lectures Sir, I disagree with Jawad Iqbal’s criticism of equity, diversity and inclusion at the University of Oxford (“Oxford’s diversity lectures won’t protect free speech”, Oct 9). As a first-year Oxford student who received the diversity training this week, I found his description bore no resemblance to reality. Far from being “a recipe for intellectual docility and ideological conformity”, the training I received was intended to help us to disagree more effectively. In a discussion that lasted more than an hour, my year group talked through scenarios that covered everything from antisemitism to gender-critical ideas. Rather than shut down debate, the session opened up a space for conversation about all these issues. The political theorist who ran my session was clear that Oxford would unapologetically defend free speech, and that “diversity of opinion” was included under the “D” of EDI. It is not woke simply to remind students of their legal obligations under the Equality Act 2010, or to insist that mutual respect and tolerance should underpin political disagreement. Joshua Greenslade Brasenose College, Oxford
October 11, 2025 at 10:56 AM
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medpagetoday.com
"There is nothing beautiful about shifting the burden onto those least able to bear it. But this is precisely what our nation is now poised to do."

ME/CFS and long COVID advocate Laurie Jones writes on Medicaid work requirements. https://www.medpagetoday.com/opinion/second-opinions/117839?trw=no
Opinion | Medicaid Work Requirements Will Devastate People With Invisible Disabilities
ME/CFS and long COVID patients must qualify as 'medically frail'
www.medpagetoday.com
October 8, 2025 at 9:09 PM
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georgemonbiot.bsky.social
ME/CFS is a devastating condition that has long been denied, dismissed, psychologised and underdiagnosed. Research is at last starting to catch up with it, with glimmers of hope for those who have been left untreated for so long.
There's a huge BUT coming ...🧵
www.theguardian.com/society/2025...
Scientists develop first ‘accurate blood test’ to detect chronic fatigue syndrome
Research could offer hope for ME patients – but some experts urge caution and say more studies needed
www.theguardian.com
October 8, 2025 at 6:09 AM
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heatherfeather.bsky.social
one of the biggest names in trans healthcare discrimination is also one of the biggest names in ME/CFS healthcare discrimination (Simon Wessely) & as a trans person with ME/CFS i'm begging all of us to make this intercommunity connection
October 9, 2025 at 3:57 AM
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tomkindlon.bsky.social
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"most patients research their own conditions. As physicians, we must accept that these patients may know more than we do about their condition."

doi.org/10.31486/toj...

Screenshot from latest Science for ME weekly update

#LongCovid #chronicillness #epatients #MEcfs
When We Don’t Have All the Answers: Long COVID and the Need for Humility in Medicine — Liza Di Leo Thomas Editorial. "In the hope of returning their lives to their pre-illness state, most patients research their own conditions. As physicians, we must accept that these patients may know more than we do about their condition. This idea can be difficult to accept because we are supposed to be the experts, the ones who can advise patients on the best tests and the best possible management of their conditions."
October 3, 2025 at 12:46 AM