Snow Leopard

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."

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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

Trump's higher ed ransom note is here - everyone would have to acquiesce to their unprecedented demands or not be "given priority for grants," plus they can demand "reimbursement" for "violations" www.wsj.com/us-news/educ...

A mechanism to enforce fealty. An attack on academic freedom and democracy

Skeletal muscle oxygen diffusion may be impaired in people with ME/CFS and in those with long COVID _} • Oxygen diffusion in skeletal muscle is the movement of oxygen from the blood, through tissue, and into the mitochondria for cellular respiration. • Impairment of this process would lead to reduced oxygen reaching mitochondria decreasing their ability to produce energy through the most efficient pathway. • This may explain exercise intolerance in people with ME/CFS, and in those with long COVID, but more research is needed before firm conclusions can be drawn. Jothi et al., Physiological Reports (2025) R EStE,AC H INFORM. INFLUENCE. INVEST. SCO36942

From ME Research UK @meresearchuk.bsky.social

A small study has identified that skeletal muscle oxygen diffusion may be impaired in both people with ME/CFS and in those with long COVID.

Read more: bit.ly/4naUeKi

#MEcfs #CFS #PwME

The amount of low quality psychology surveys/scales spammed on Reddit by grad/honours students, nothing would surprise me much.

AI-generated ‘participants’ can lead social science experiments astray, study finds Data produced by “silicon samples” depends on researchers’ exact choice of models, prompts, and settings

A lot of psych is already conducted with online convenience samples & ppl are probably excited about silicon samples bc it would allow them to crank out more studies for even less 💸

How about we reconsider the idea that sciencey science involves collecting own data.
www.science.org/content/arti...

I will never forget the story of “Cara”, a 16 year old who was bullied into removing her mask at school.

Staff and kids bullied her.

Her mom was immunocompromised and undergoing chemo, and Cara was trying to protect her.

She caught Covid & her Mom died.

We must be better than this.

I recently went from moderate to severe (bed bound) and back due to medication side effects and it was scary. If you live on your own and you can't get out of the house? It's an existential threat.

Google's recent Android changes (to force developer verification via Google) are anti-competitive and will lead to the shut down of alternative app stores like Fdroid
f-droid.org/2025/09/29/g...

It's a Dr Max Pemberton junk article. He complains about people wearing masks in his medical practice, when that is arguably the best time to wear masks - because there is high risk of spreading/contracting infectious disease in that setting.

Table 2. Never-WordsforPatientsWithInvisibleIllnesses– Liza Di LeoThomas,MD Di Leo Thomas, L Never-WordPhrase Alternative Explanation “But you look fine.” “At least you don’t look sick.” “Great news! All your tests are negative!” “You can’t believe everything you see online. Let’s not diagnose you based on a TikTok influencer.” “At least you’re not bedbound, wheelchair bound, don’t have cancer, et cetera, et cetera, et cetera….” “Wedon’t knowmuchaboutthisillness. There’s nothing I can do for you.” “It must be frustrating to feel so awful.” “The goodnewsiswehaveruledout (A, B, C) by doing these tests. But I believe there is something wrong, and I will work with you to figure it out.” “Thank you for taking such an interest in your illness and advocating for yourself. Let’s talk about what you saw online.” “It sounds like you are suffering with this quite a bit. Can you explain how it has affected your quality of life?” “I realize the research on Long COVID is slow to come, andIcan’t imagine how frustrating that is for you. Let’s see whatwecandorightnowtotreat someofyoursymptomsandimprove your quality of life.” Telling patients they look fine may make themfeel like you are doubting their illness, even if you are not. Somepatients maynotfeel like it is great newsthat test after test is negative whentheyknowsomethingis absolutely wrong with them. Online communities have become ahuge source of support for patients with LongCOVIDandotherinvisible illnesses. Hearing someone else describe the same symptomscanbe incredibly validating. Avoid dismissing these sources outright. Avoid starting with “at least,”which can sound dismissive or invalidating. Instead, explore how the illness impacts the patient’s life. Even without definitive treatments, providers can offer symptom managementandhope. Acknowledging the patient’s frustration while focusing on what can bedoneisempowering.

"Never-Words for Patients With Invisible Illnesses – Liza Di Leo Thomas, MD"

From:
When We Don’t Have All the Answers: #LongCOVID and the Need for Humility in Medicine

www.ochsnerjournal.org/content/25/3...

#invisibleillness #LongCovid #chronicillness
#hiddenillness #ChronicIllnesses

This would be great, if medical doctors could read. 😉
(one of those days)

Key points you should know: Some people with Long COVID are receiving potentially unhelpful diagnoses of functional neurological disorder (FND), a condition in which people experience neurological symptoms that cannot be attributed to known or currently identifiable pathophysiological causes. FND proponents theorize that it is a “brain network” disorder characterized by factors such as hyperawareness of bodily sensations and faulty perceptions of self-agency, but the diagnosis does not explain Long COVID symptoms. Researchers, clinicians, and people with Long COVID say that FND treatments can be unhelpful or even harmful and that the diagnosis can lead to delays in appropriate care for symptom relief. Since having FND in medical records can lead doctors to attribute subsequent medical complaints to the condition, some seek to have the diagnosis changed or removed.

"Long COVID is not FND, but some patients are getting diagnosed with it. Here’s what to do if it happens to you" (Sept 26) by @davetuller1.bsky.social

thesicktimes.org/2025/09/26/l...

There are some references to ME and generally it seems just as relevant to those with ME/CFS

#LongCovid #MEcfs
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Young girl wearing a patterned face mask holds a doll that also has a matching mask. Text reads: “LONG COVID NEWS By Tess Finch-Lees. Forever-Covid hurts young people’s health – and their futures. Many facets of normal development could be impaired by lingering and long-lasting effects of coronavirus. Source: Irish Independent, 24th September, 2025.”

🌟Superb article on #LongCovid in children by Tess Finch-Lees

"Covid is not benign in children. In January, a review highlighted the wide-ranging impact of long-Covid on children and adolescents."

No paywall in next post 👇

m.independent.ie/opinion/comm...

That is thermodynamically ideal.

Vilde became disabled at the age of 25. Vilde Lepsøy became disabled at the age of 25. Then many of her dreams withered. Photo: RUNE JOHANSEN Now Vilde (33) is participating in a new ME study at Hauke

Google translation of an article on an interesting #MECFS drug trial that is about to start in Norway

www-nettavisen-no.translate.goog/nyheter/vild...

Sadly they still haven't reached the amount required to fully do this study.

People can donate here:
www.me-foreningen.no/om-oss/stott...

#PwME

I was worried about this from the start, too many of the "this is new", we can get loads grant money attitude. Rather than a focus on learning from the mistakes made by those who came before studying post-infectious illnesses. The real shame is so many are still not listening to patients properly.

😿

I'm confused, which century is it right now in the USA? It's shocking to see how rapidly the regression is happening.

From a Nature piece on bad peer review comments www.nature.com/articles/d41... While most of these are "go away and never review again" tier, I can relate to a couple of these

Wikipedia Is Vital: Channeling Energy Into Micro-Edits Is a Win-Win-Win - Absolutely Maybe Wikipedia is, “without exaggeration, the digital world’s factual foundation,” wrote Josh Dzieza recently. It’s a target because of that, squarely in the…

Want to be able to start micro-editing on Wikipedia in a few minutes – and know why you could be very glad you did? Then my new post @plos.org is just what you need!

absolutelymaybe.plos.org/2025/09/21/w...

#Wikipedia

I desparately hoping that's not how the rule of law works in the USA.

Also, if an administration explicitly opposes anti-fascists as an ideology, does that make them fascist?

Online safety is more important than ever right now, and most people give away their location online unknowingly.

I'm Eliza Orlins, a career public defender for 15 years in Manhattan. I spend a lot of time thinking about safety—both offline and online.

Here are 10 ways to keep yourself safe 👇

Sad but true. There are a few people who choose to break the scripts but they are the rare exception.

I saw a snippet of a debate/discussion at Oxford and he incorrectly quotes probably false statistics etc as fact. It's all presentation and performance as you say.

Cat brains age like humans: Translating Time shows pet cats live to be natural models for human aging Translating biological time across species is a powerful tool to identify new models of human aging and disease. Currently, it is not clear whether any animal reaches an age comparable to a human in t...

"Cats, and especially pet cats, are natural model systems of human aging" www.biorxiv.org/content/10.1...

Damn, they are pretty though.

All of the talk about "political violence" is an elite-lives-matter movement. They don't give a shit about the murder of poor people.

Look at that tail. Snow leopard at the Los Angeles Zoo.

It can be even higher if there is loss of other benefits eg social housing.

The reality is the sensitivity and specificity of these detection methods (trained dogs and cats) is actually quite poor compared to biomarkers in general. That said, the bedside manner of rats is much better than the average medical practitioner.