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Snow Leopard

@snowypanthera.bsky.social
120 followers 211 following 286 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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Kelly @broadwaybabyto.bsky.social · 11/09/2026
Anyone can become disabled at any time. It’s not a moral failing. It’s not laziness or a lack of effort. It’s a part of the human condition. People get sick. Bodies break down. It’s a minority group you can join any time.
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Kelly @broadwaybabyto.bsky.social · 11/09/2026
One of the most exhausting parts of disability is being unnecessarily forced to prove you’re still disabled. The paperwork, the questions, the intrusion into your life. It’s meant to discourage you. It’s intended to dehumanize. They want you to give up.
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Tom Kindlon @tomkindlon.bsky.social · 25/08/2026
European Federation of Neurological Associations (EFNA): “Patients with ME cannot wait for a cure before the harm stop” by Ona Albizu PhD www.efna.net/patients-wit... #MEcfs #PwME #MyalgicEncephalomyelitis
European Federation of Neurological Associations (EFNA)
PATIENTS WITH ME CANNOT WAIT FOR A CURE BEFORE THE HARM STOPS – ONA ALBIZU
For many years, I have lived with moderate/severe myalgic encephalomyelitis (ME). I was housebound and dependent on others for some basic activities of daily life. The disease itself has taken away many aspects of the life I once had. But the suffering caused by ME does not come only from the disease.
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Tom Kindlon @tomkindlon.bsky.social · 06/09/2026
🧵 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. www.meresearch.org.uk/the-experien... #MEcfs #PwME #CFS #BrainFog 1/
What cognitive dysfunction (brain fog) in ME/CFS feels like 
cannot concentrate mind blank unable to read paused brain losing words mid-sentence knowing what you want to say, but being unable to access the words unable to follow conversation information too fast to process exhausting using wrong words 
feeling less intelligent difficulty retaining info 
Recurring themes from ME Research UK Symptom Saturday MCognitive Dysfunction Survey u, Z`" INFORM. INFLUENCE. INVEST. SCO36,42 
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Tom Kindlon @tomkindlon.bsky.social · 03/09/2026
(Melbourne, Australia) I was contacted to see would I highlight this as they are struggling to recruit their target. I haven't done a deep vet but see that Chris Armstrong is involved which reassures me #MEcfs #LongCovid #POTS

Females needed for research study
The FRIENDS Study is looking for participants with Long COVID, Myalgic Encephalomyelitis /Chronic Fatigue Syndrome (ME/CFS) or Postural Orthostatic Tachycardia Syndrome (POTS) to help us study how the brain and heart are affected.
Join our research study
We are looking for women who:
are aged 18 or over
suffer from Long COVID, ME/CFS or POTS. We are also looking for healthy women.
Participants will need to attend
2x3hr visits to clinics in Melbourne.
For further information, please contact:
Study Coordinator
Baker Heart and Diabetes Institute
T: 03 8532 1356
E: friends@baker.edu.au
LBNP
or visit baker.edu.au/research/clinical-trials/friends-study
V1.1 22 May 2025
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ME/CFS Science @mecfsscience.org · 02/09/2026
4) "To be blunt: the new study is not going to advance our knowledge one iota." Link to his article: edzardernst.com/2026/08/the-...
edzardernst.com
The ‘Lightning Process’ – a new trial is starting
McMaster University has launched a trial to evaluate the Lightning Process (LP). We have discussed the LP before, e.g.: Almost anyone can recover from long Covid: just pay a lot of money for the ‘Ligh...
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Adam @abrokenbattery.bsky.social · 23/08/2026
“But we’re all tired… you don’t look sick… you were fine yesterday” Things not to say to someone with #MECFS. Chloe Mogg and actor and playwright Hollie Christian-Brooke react to some of the comments they've had.
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Snow Leopard @snowypanthera.bsky.social · 14/08/2026
Introduce yourself as what almost killed you. Hi, I'm a Tetanus/Diphtheria vaccine
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Snow Leopard @snowypanthera.bsky.social · 13/08/2026
Max Pemberton is still up to his same bullshit, with another vulnerable group in sight.
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Martin Grimshaw Has Long Covid @thrivingplanet.bsky.social · 12/08/2026
Everyone with #MECFS & #LongCovid deserves £compensation for harm, neglect, abandonment, and blocked research and treatments. Instead of healthcare we have gaslighting. It's a scandal. I would write more but waking up in pain and discomfort and a broken brain, every fecking day, dulls my eloquence.
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Bold Politics @boldpolitics.bsky.social · 12/08/2026
We don't talk about the fact that nuclear weapons harm people *before* they are fired enough.
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Monika Merkes PhD Ⓥ @monikamerkes.bsky.social · 08/08/2026
"Solutions do exist. Tax havens can be closed. Financial secrecy can end. Politics can be protected from the influence of extreme wealth. Fairer taxation systems can be introduced. And yes, societies can choose to place limits on how much wealth any one individual is allowed to accumulate." #auspol
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Daniel Lakens @lakens.bsky.social · 04/08/2026
I think there is not better resource out there to educate people about the misconception that there is no effect when p>. 05 then my textbook. The chapter on equivalence testing, lakens.github.io/statistical_... And if needed, chapter 1 on p-values, and perhaps even the section on bayes factors.
lakens.github.io
9  Equivalence Testing and Interval Hypotheses – Improving Your Statistical Inferences
This open educational resource contains information to improve statistical inferences, design better experiments, and report scientific research more transparently.
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🎃 Robin Bobcat 🎃 @robinbobcat.bsky.social · 01/08/2026
The problem comes that the people who think disability and homelessness are *moral* failings think that they only happen to Bad People. Since they themselves are Good People, they don't have to ever think about it. Just World/Prosperity Doctrine, utterly toxic mindset.
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Kelly @broadwaybabyto.bsky.social · 01/08/2026
You can become disabled or homeless in an instant. It just takes one accident or illness to change your life forever. It’s not a moral failing. You can’t just “try harder”. People need support, compassion and to have their basic needs met. That’s how you ensure survival.
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Kelly @broadwaybabyto.bsky.social · 04/08/2026
It’s not your fault you’re disabled. It’s not your fault you’re chronically ill. It’s not your fault you’re living in poverty, lacking health insurance, homeless or unemployed. The billionaire class wants us to believe these are moral failings so they don’t have to help people. We should help.
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Snow Leopard @snowypanthera.bsky.social · 24/07/2026
Trickle down housing is BS, there are few people at the high end anyway. The extra cost of housing means less people can afford it which means LESS HOUSING IS BUILT AS A RESULT.
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ME/CFS Science @mecfsscience.org · 15/07/2026
1) 🇩🇪 There's a new randomised trial of cognitive behavioural therapy (CBT) for Long Covid, from the Johannes Gutenberg University Mainz in Germany. It claims that CBT lowered fatigue but it has the usual fatal limitations that make the results unreliable.
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Alejandra Caraballo @esqueer.net · 12/07/2026
Amnesty International put out a major report documenting the influence of UK based anti trans gender critical organizations and their funding. Within hours, GC groups threatened defamation lawsuits and Amnesty was forced to pull it down. Proving the point they're anti rights. Anyways, here it is.
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Lucibee @lucibee.bsky.social · 06/07/2026
🚨Update🚨 A couple of weeks ago, I repeated my FOIA request (with a few additions) to see if anything had improved. Let's just say that it hasn't. 😩 Watch this space for more information. @tessamunt.bsky.social @actionforme.bsky.social
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Tom Kindlon @tomkindlon.bsky.social · 03/07/2026
NEWS RELEASE 2-JUL-2026 Brain’s waste-clearing ability impaired in ME/CFS patients www.eurekalert.org/news-release... Paper: www.frontiersin.org/journals/neu... #mecfs #pwme #cfs 1/
NEWS RELEASE 2-JUL-2026
Brain’s waste-clearing ability impaired in ME/CFS patients
The brain’s waste clearance system is impaired in people living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) which can lead to various symptoms including brain fog, Griffith University researchers have discovered

Peer-Reviewed Publication
GRIFFITH UNIVERSITY
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Neuroskeptic @neuroskeptic.bsky.social · 29/06/2026
This is not "how images reach the brain". This would be a cool image for a story about zombies who shoot lightning out of their eyes though.
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Hilda Bastian @hildabast.bsky.social · 25/06/2026
An argumentation theorist's ethnographic case study about the Cochrane review on ME/CFS raises, I think, structural implications for journals like Cochrane's. My latest post @plos.org absolutelymaybe.plos.org/2026/06/24/v...
absolutelymaybe.plos.org
Values and Conflicts at Journals - Absolutely Maybe
What makes an argument ‘correct,’ or, at least, reasonable? We can debate about each other’s claims endlessly, and there’s an interdisciplinary field…
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George Monbiot @georgemonbiot.bsky.social · 29/06/2026
These are not trivial matters. This is the entire fabric of what we call democracy being torn up. Without free speech, freedom of assembly, and robust rights to protest, democracy is a dead letter. But while this astounding change is taking place, the great majority of people are completely unaware.
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George Monbiot @georgemonbiot.bsky.social · 29/06/2026
Few people understand the scope of the powers UK governments have granted themselves, to criminalise us as terrorists for expressing an opinion. Fewer still understand how illiberal the Court of Appeal judgement is. But @davidallengreen.bsky.social does.🧵 www.prospectmagazine.co.uk/ideas/law/th...
prospectmagazine.co.uk
What the Palestine Action appeal decision tells us about terrorism law
An already broad law is now matched with broad ministerial powers
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Anil van der Zee @anilvanderzee.bsky.social · 28/06/2026
This pacing‑based rehabilitation and management study showed that right after the 5‑week rehab stay, 45 percent of patients were worse on the Bell Disability Scale, and only 14 percent improved. 😩  Another rehabilitation study bites the dust… #pwme #myalgicE papers.ssrn.com/sol3/papers....
papers.ssrn.com
Evaluation of an Integrated Multidisciplinary Care Model for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: a Prospective, Open-label, Non-randomized Controlled Intervention Study
BackgroundMyalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a disabling condition with limited treatment options and inadequate healthcare structur
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Chad Loder @chadloder.dev · 24/06/2026
"We declared a War On Cancer in the 1970s and we have not made significant progress on treating cancer despite ever-increasing funding. It's a welfare program for academic labs" Bro what the FUCK are you talking about. The survival statistics do not bear this out even at first glance
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Chad Loder @chadloder.dev · 24/06/2026
I've made the mistake of listening to a lot of Peter Thiel interviews recently to try to understand his worldview. The guy is an absolute third-rate thinker who contradicts himself every 30 seconds and nobody pushes him on it.
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Tom Kindlon @tomkindlon.bsky.social · 20/06/2026
"Being Informed: Understanding Treatment Pathways" emerge.org.au/starting-a-n... "Emerge Australia suggests before starting any treatment, including those claiming to cure or provide a pathway to recovery for ME/CFS or long COVID, consider asking the following ten questions..." #MEcfs #LongCovid
Being Informed: Understanding Treatment Pathwaysemerge.org.au/starting-a-new-treatment
emerge Australia logo
Making informed decisions about your care and management is important becausethere are no cures, evidence-based treatments, or any medications theTherapeutic Goods Administration has approved for ME/CFS or long COVID. 
Recommended management involves:
pacing and rest to manage energy,
and stepwise-symptom management to address symptoms and manage co-occurring conditions. 

Many people want to know how a treatment might help and whether it’s the rightoption for them. People with ME/CFS and long COVID can respond differently totherapies that aim to manage symptoms. What works well for one person may notwork the same for another. 

 Emerge Australia suggests that before starting any treatment, including thoseclaiming to cure or provide a pathway to recovery for ME/CFS or long COVID,consider asking the following ten questions:
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Taylor Lorenz @taylorlorenz.bsky.social · 20/06/2026
If lawmakers are serious about protecting children, they should roll back age-verification policies and start targeting the systems that incentivise mass surveillance. Read my latest print piece for The Guardian 👇 www.theguardian.com/commentisfre...
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 04/09/2024
Most presume: (1) chronic illness won't happen to them and that, if it does, (2) care will be affordable and (3) readily available, and (4) diagnosis will be timely None of these are reasonable or logical to assume, and all are generally incorrect.
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 04/09/2024
There is no standard care for many chronic illnesses, & most clinicians still don't know how to diagnose the majority of them. If you develop a chronic illness that isn't heart disease or diabetes you will, for the most part, be on your own.
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Hilda Bastian @hildabast.bsky.social · 17/06/2026
When Can We Be Sure a Placebo Is Really a Placebo? OK, I admit this cartoon is not on point here. But I think it's one of my better cartoons, and that's my excuse for trotting it out! The point is a recent scoping review on active placebo controls, by David Laursen and colleagues. "Active placebo"…
hildabastian.wordpress.com
When Can We Be Sure a Placebo Is Really a Placebo?
OK, I admit this cartoon is not on point here. But I think it's one of my better cartoons, and that's my excuse for trotting it out! The point is a recent scoping review on active placebo controls, by David Laursen and colleagues. "Active placebo" sounds a bit like a contradiction in terms. That makes using them in trials one of those friction points capitalized in anti-vaccine evidence critiques: If it's active, so the argument goes, it's not a placebo, and the trial's results can be denigrated.
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David Davies-Payne @d2p.bsky.social · 16/06/2026
📢 The WE&ME Foundation announces a biomedical research call for #MECFS 🔬🙋🏻‍♀️ • Indicative: ~7 projects funded, subject to quality • Budget: EUR 120,000 to EUR 180,000 per project • International applications • Selection by international jury 👉 www.weandmecfs.org/weme-projects/
weandmecfs.org
WE&ME Projects • WE&ME Stiftung
Scope of the Call This call is open to research teams that aim to advance our understanding of the biological mechanisms of Myalgic
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Long Covid Advocacy @longcovidadvoc.com · 02/06/2026
🧵OF KEY CONCERNS We've now read Alan Levinovitz's WIRED piece on Long Covid. Our concern isn't that it discusses psychological theories. Our concern is that it repeatedly conflates criticism of evidence with creating a "climate of fear". Those are not the same thing. /1
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Tom Kindlon @tomkindlon.bsky.social · 09/06/2026
I like many other people thought this blog post was very good "Why I Can’t Just Meet You for Dinner" substack.com/home/post/p-... Screenshot from AMMES May 2026 Newsletter #MEcfs #LongCovid #PEM #PostExertionalMalaise
Photo of somebody with their hand to their face with the following text
Why I Can’t Just Meet You for Dinner
Post-exertional malaise (PEM for those of us who live with it intimately) is not tiredness. It’s not even exhaustion. It’s a systemic crash that occurs after physical, cognitive, or emotional exertion that exceeds your body’s brutally reduced energy envelope.  
Read more here>>
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Fred Rossi @darthfoo.bsky.social · 05/06/2026
They call us obstacles to progress. I’m enrolled in the research. My response to WIRED’s “The Painful Truth About Long Covid.” darthfoo.substack.com/p/the-patien... #LongCOVID #MECFS #Wired #PEM #CBT #GET
darthfoo.substack.com
The Patient Who Isn’t Supposed to Exist
I taught Cognitive Behavioral Therapy (CBT) before Long COVID made me a patient. WIRED got the story exactly backward.
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The Cathy Wilcox @cathywilcox.bsky.social · 02/06/2026
Do something. My @smh cartoon.
Four frames. 1. Two people declaiming. One says, “Omigosh! The Cost of Living!! Everything is unaffordable!” Other says, “Real estate prices are through the roof!” 2. Same people, “Young people are losing hope of ever being able to afford a home…” “The government should DO something!” 3. PM Albanese at presser says, “OK. We listened. We’ve changed some tax rules to make housing more affordable.” Panel says “A FEW WEEKS LATER…” 4. Same two people, first says, “Omigosh! House prices have CRASHED by 1%” second says, “How will people ever get ahead if the value of their asset plummets?!
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valebodi.bsky.social @valebodi.bsky.social · 28/05/2026
Contrary to earlier assumptions framing long COVID as predominantly a legacy of initial pandemic waves, the data analysis demonstrated a sustained upward trajectory in cumulative prevalence across all examined regions. This persistent increase underscores SARS-CoV-2 as a continuing catalyst for the
bioengineer.org
Multi-Hospital Study Reveals Long Covid Burden Is Twice as High as Current
New Artificial Intelligence Algorithm Reveals Long COVID Prevalence Twice as High as Previously Estimated Across U.S. Hospitals Groundbreaking research emerging from Mass General Brigham has unveiled
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Ed Zitron @edzitron.com · 26/05/2026
Today’s free newsletter is about how LLMs are the perfect grift to exploit an economy dominated by do-nothing managers and executives disconnected from any real work, and how the facade is crumbling as companies pay the true cost of AI. www.wheresyoured.at/the-revenge-of-the-business-idiot/
wheresyoured.at
Revenge of The Business Idiot
If you liked this piece, you should subscribe to my premium newsletter. It’s $70 a year, or $7 a month, and in return you get a weekly newsletter that’s usually anywhere from 5,000 to 18,000 words, in...
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Jeremy Poxon @jeremypoxon.bsky.social · 26/05/2026
It is not a "major overhaul" if you keep the mutual obligations system in place. That's punishment as usual. And it's punishment that's been found to be unlawful - which this puff piece completely omits
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Roland Meyer @bildoperationen.bsky.social · 27/05/2026
The enormous response to the Pope’s encyclical is a sign that we are indeed living in neo-feudal times. Unchecked global power is being amassed by a handful of reckless individuals, not least through theft, fraud, and the exploitation of natural resources and human labour on a planetary scale 1/
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John Peters @johnthejack.bsky.social · 26/05/2026
Some jobs will be lost and others created as a result of AI. But the declining share of income afforded to labour at the expense of capital is unlikely to reverse. This remains the key policy challenge of our new technology. (£) www.thetimes.com/business/eco...
thetimes.com
The 19th-century paradox that gives hope for jobs in the world of AI
The work of William Stanley Jevons has resurfaced as analysts attempt to predict how artificial intelligence will reshape the world of work
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Damian Carrington @dpcarrington.bsky.social · 25/05/2026
ICYM - Almost all – 98% – environmental claims and commitments made by meat and dairy companies over 2021-24 could be categorised as “greenwashing” - research paper #climatecrisis HT @carbonbrief.org journals.plos.org/climate/arti...
journals.plos.org
Environmental claims, climate promises, and ‘greenwashing’ by meat and dairy companies
Animal agriculture has disproportionate environmental impacts relative to other forms of food production and accounts for at least 16.5% of all global greenhouse gas (GHG) emissions. Many of the large...
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ABC News Australia @news.abc.net.au · 23/05/2026
abc.net.au
Hayden has lobbied for bike lanes for years. Now he's given up
Climate change, the cost-of-living crisis and healthy lifestyle goals should make active transport like cycling a no brainer. So why does Australia struggle to build a bike culture? 
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Physios For ME @physiosforme.bsky.social · 12/05/2026
This #MEawarenessDay we are delighted to have an article published in in the Chartered Society of Physiotherapy's magazine "Frontline", which goes out to all chartered physiotherapists in the UK (that's over 67,000!) www.csp.org.uk/frontline/ar...
csp.org.uk
Do no harm: supporting people with ME/CFS
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Common Dreams @commondreams.org · 14/05/2026
Big Tech has "built a billion-dollar industry on stolen voices because they thought no one would make them pay for it," said a lawyer for the journalists and audiobook narrators suing under Illinois' biometric privacy law.
commondreams.org
Journalists, Audiobook Narrators Sue AI Giants Under Illinois Biometric Privacy Law for 'Stealing Their Voices'
"They've built a billion-dollar industry on stolen voices because they thought no one would make them pay for it," said a lawyer for the plaintiffs.
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Don Lynam @drlynam.bsky.social · 13/05/2026
Excited to share this one: Open Science Now: A Response to Commentaries on Van Til et al. (with @kaelavantil.bsky.social, @nphillips36.bsky.social, Tinawei (Vera) Du, Leigha Rose, @jdmiller.bsky) osf.io/preprints/ps... See below for the TLDR version 1/8
osf.io
OSF
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Dr Elisa Perego @elisaperego78.bsky.social · 14/05/2026
Long Covid has become one of the most common chronic diseases, as common or more common of conditions "such as ischaemic heart disease, gout, chronic obstructive pulmonary disease, and rheumatoid arthritis." Yet it remains poorly addressed and treated #LongCovid newsroom.co.nz/2026/05/14/t...
newsroom.co.nz
The Long Covid paradox: everywhere but nowhere
Comment from Victoria University: In 2022 NZ’s Long Covid response showed promise, but it’s hard to justify our business-as-usual approach now
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It's Jamie @sjamieit.bsky.social · 11/05/2026
The City of Ottawa posted the raw speed data from before and after Doug Ford banned speed cameras and the effect is so obvious it's not even necessary put a line marking when that happened. This chart shows the percentage of drivers going 15km/h or more over the posted limit.
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