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Snow Leopard @snowypanthera.bsky.social · 39m

I hate how even modest changes are so heavily resisted in Australia due by people who seem to hate change for the sake of it.

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MedPage Today @medpagetoday.com · 2d

"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

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George Monbiot @georgemonbiot.bsky.social · 3d

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

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heather @heatherfeather.bsky.social · 2d

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

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Snow Leopard @snowypanthera.bsky.social · 2d

Fortunately it is being called out. transsafety.network/posts/simon-...

Wesseley has his hands full also targeting 'over-diagnosis' of neurodivergence. George Monbiot: skywriter.blue/pages/did:pl...

I suspect his appointments are primarily for reducing cost to the state, regardless of harm.

Page by George Monbiot | @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 bee...

skywriter.blue

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Tom Kindlon @tomkindlon.bsky.social · 8d

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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."

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Brendan Nyhan @brendannyhan.bsky.social · 9d

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

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Tom Kindlon @tomkindlon.bsky.social · 10d

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

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

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Snow Leopard @snowypanthera.bsky.social · 9d

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

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Julia M. Rohrer @dingdingpeng.the100.ci · 10d

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...

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

www.science.org

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Kelly @broadwaybabyto.bsky.social · 11d

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.

Clinically Vulnerable Families 💙💜💗 @cvcev.bsky.social · 11d

Children must NEVER choose between EDUCATION and LIVES.

Both are human rights.

#EducationANDlives

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Snow Leopard @snowypanthera.bsky.social · 10d

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.

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Snow Leopard @snowypanthera.bsky.social · 10d

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...

Snow Leopard @snowypanthera.bsky.social · 11d

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.

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Tom Kindlon @tomkindlon.bsky.social · 14d

"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

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.

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Snow Leopard @snowypanthera.bsky.social · 12d

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

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Tom Kindlon @tomkindlon.bsky.social · 13d

"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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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.

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Long Covid Advocacy @longcovidadvoc.com · 16d

🌟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...

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.”

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Snow Leopard @snowypanthera.bsky.social · 16d

That is thermodynamically ideal.

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Tom Kindlon @tomkindlon.bsky.social · 18d

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

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

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Snow Leopard @snowypanthera.bsky.social · 17d

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.

Snow Leopard @snowypanthera.bsky.social · 17d

😿

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Snow Leopard @snowypanthera.bsky.social · 17d

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

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Neuroskeptic @neuroskeptic.bsky.social · 19d

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

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Hilda Bastian @hildabast.bsky.social · 19d

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

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…

absolutelymaybe.plos.org

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