Lilibuster

Keeper of the weird

[Lilibuster @lilibuster]

Absolutely horrifying, truly dystopian. As someone who needs to mask to protect my health this means I can no longer protest or even be in the vicinity of a protest by accident without risk of arrest with no warning

[Clinically Vulnerable Families 💙💜💗 @cv_cev]

🚨 WARNING: As of Monday, wearing a mask at a protest is a criminal offence in England & Wales.

This is now the law.

🧵 on what this means for Clinically Vulnerable people...
1/ #ProtectVulnerableProtesters

[Billy Hanlon @bhanlon15]

'Metformin Cuts Long COVID Risk by Half in New ACTIV-6 Trial Results'

'The ACTIV-6 trial suggests early metformin may halve clinician-diagnosed long COVID risk, offering a low-cost option pharmacists can apply safely.'

https://t.co/M74Q4LpQbu

[Carole Bruce @CaroleBruce17]

‘Parked on benefits’ because in the case of #ME and #LongCovid governments have repeatedly refused to finance biophysical research into post-viral illness and chosen to follow a BPS model which has never worked. It’s economically and humanely ignorant. We long to be able to work

[Jon Douglas @atranscendedman]

Researchers found autoantibodies in long COVID that target neural proteins and can directly cause symptoms.

Patient IgG transferred to mice triggered fatigue, pain, weakness and balance problems, supporting autoimmunity as one mechanism.

https://t.co/8aL42MFkGw

[Cat in the Hat 🐈‍⬛ 🎩 🇬🇧 @_CatintheHat]

🩵 CARE ABOUT AIR 🩵

This stunning wall mural was unveiled at UPFEST, Europe's largest street art festival in Bristol.

It’s designed to promote the ‘Clean Air for Kids’ campaign & open up conversations about improving indoor air quality in schools.

https://t.co/mqcIxJrE3t

[charlos @loscharlos]

“The researchers estimate that half or more of the gap in life outcomes between older and younger siblings can be attributed to pathogens inadvertently brought home by older siblings.“ https://t.co/wl7JFCteGF

[Lindsay Skipper @LindsaySkipper]

New article released today by our team. We highlight how the lived experience can and should be part of all stages of research and never just tokenism.

Patients are the expert in their condition and there is always more to hear and learn from them.

https://t.co/L6UgiQRKXb

[Manuel Ruiz @manruipa]

‼️⚠️Please read this until the end.

A widely shared article has presented a deeply misleading view of Long COVID, suggesting once again that cognitive behavioral therapy, exercise, and “mind-body” approaches may be the uncomfortable truth patients refuse to accept.

This needs to be challenged.

Not because the nervous system does not matter.
Not because psychological support cannot help.
But because confusing support with cure, physiology with psychology, and heterogeneity with “it might be in your head” is exactly how medicine has harmed post-infectious patients for decades.

There are articles about Long COVID that look like science journalism, but in reality they repackage, in modern language, a very old idea: if we do not fully understand a disease, maybe the problem is in the patient’s mind.

And that is not science. That is repeating history.

The article begins with a striking sentence:

“There isn’t a single approved pharmaceutical treatment, not even a test to verify the presence of the illness.”

This may sound forceful, but it is a very misleading way of presenting the problem.

The fact that there is still no drug specifically approved for Long COVID, or a single diagnostic test, does not mean that “nothing has been found.” It means that we are dealing with a heterogeneous disease, probably with several biological subgroups, and that medicine has not yet converted those findings into validated clinical tools.

“No single diagnostic biomarker” is not the same as “no biology.”

In just a few years, immunological, vascular, neurological, endocrine, and metabolic abnormalities have been described in subgroups of Long COVID patients: autonomic dysfunction, herpesvirus reactivations such as EBV/HHV-6, alterations in the cortisol axis, autoantibodies against GPCR receptors — including adrenergic and muscarinic receptors — persistent viral antigens, endothelial damage, muscle abnormalities after exertion, mitochondrial dysfunction, persistent inflammation, and differential immune changes.

Is everything settled? No.

Does that mean it is psychological? Also no.

Science does not work like that. Multiple sclerosis did not stop existing before we had MRI. Many autoimmune diseases do not show up in routine blood tests. If a complete blood count, a basic biochemistry panel, or an X-ray comes back “normal, normal, normal,” that does not prove the absence of disease. It only proves that you are looking with inadequate tools.

One of the article’s most serious mistakes is this: it confuses the absence of a simple clinical test with the absence of organic disease.

And that mistake has caused harm for decades.

The article also says:

“Almost $2 billion and half a decade of international effort have yielded little more than hypotheses about micro blood clots and spike proteins and mitochondrial dysfunction.”

No. That is not correct.

A hypothesis is a provisional explanation. But when you compare patients and controls and find significant differences in muscle tissue, metabolism, response to exertion, immune biomarkers, viral antigens, autoantibodies, or vascular dysfunction, you are no longer talking about “little more than hypotheses.” You are talking about lines of biomedical evidence that still need to be organized, replicated, stratified, and translated into treatments.

That is not scientific failure. That is research into a complex and new disease.

🔵Continued in the next post.👇🏻
(1/6)

[Julie Sullivan @CureLongCovid]

This is the article to amplify this week.

“Long COVID confirmed a difficult reality: modern healthcare systems are optimized for diseases that can be rapidly diagnosed, categorized, and treated — not illnesses that require uncertainty tolerance, longitudinal care, and deep listening.”

Long COVID Changed Everything https://t.co/oo6pNxyR1q

[Brad @BraddrofliT]

So let me get this straight:

When immigrants take jobs, it’s a national crisis.

When AI takes jobs, it’s innovation.

Can someone explain why we’re supposed to fear people willing to work, but celebrate technology designed to replace workers?

[the woodlander @thewoodlander1]

Whilst we were distracted, the groundwork for our AI control grid has slowly been growing. The map below shows Data Centers in Britain. Each one of these data centres use up to 5 million gallons of water per day and enough energy to supply 50,000 homes.

[Kelly @broadwaybabyto]

Alan doesn’t believe Long Covid exists, yet Wired permitted him to write extensively on the subject.

If you’re not capable of understanding the basic premise of the condition, you’re not qualified to write about it.

His piece harms the entire chronic illness community.

[Laura Miers @LauraMiers]

The problem with articles like the Wired one is LongCovid patients aren’t the intended audience. These articles aren’t meant for us. They are for our families, our doctors, our employers, & our elected officials, & they are used to harm us.

[NotOstriching @NotOstriching]

Hey @WIRED, Even @PsychToday is practicing more honest journalism than you by acknowledging that LC isn’t psychosomatic. They report that it is biologically based and a leading biomedical explanation is viral persistence in reservoirs like HIV. https://t.co/tRuMea1R2T

[Lilibuster @lilibuster]

@TogetherWeMask @MsJulieSLam @michael_hoerger @sdaction1 @TheWHN @BaileyDevine20 @DrJudyStone Love the outfit! 😍

[MaskTogetherAmerica @TogetherWeMask]

“We were sadly the only maskers in the theater. Ah well! At least we were!”— Behind the “Grogufied” KN95 is Ruth Sitts who saw The Mandalorian & Grogu movie. Read interview by @MsJulieSLam
https://t.co/2WJUhauEbl
https://t.co/nc0nqdZKL2
#WorldMaskWeek #MaskTogetherAmerica

[Dave Berkeley 💙😷 @daveberkeleyuk]

@TheVertlartnic This is how the UK's Chief Medical Officer kicked off the pandemic response in March 2020. "Face masks could increase the risk of infection". The high death rate in the UK is directly attributable to incompetent people like Jenny Harries. She should be in prison.

[Prognostic Chats @PrognosticChats]

“Since the pandemic” is so entrenched in healthcare speak no one stops to recognise how ridiculous it is. The pandemic didn’t just magically end. Covid didn’t disappear. People are still dying due to it or becoming disabled due to it. Pretending that isn’t happening is wrong.

[Cat in the Hat 🐈‍⬛ 🎩 🇬🇧 @_CatintheHat]

Pregnant women are given a long list of things to avoid to protect their unborn baby - alcohol, smoking, undercooked meat, soft cheese, etc.

But why are they not also warned to take precautions to avoid viral infections:

😷 Wear an FFP mask
🪟Open windows
🖱️Use air filters

[Prof. Katharine Hayhoe @KHayhoe]

This article says climate change is “believed to have played a role” in the UK's extreme heat this week.

As a climate scientist, let me fact-check that.

First, climate change is not a religion. No belief is required. It is about evidence.

And the evidence has been crystal clear for more than two decades: climate change is making heat waves hotter, longer, more frequent and more dangerous.

In fact, science has advanced far beyond saying climate change merely “played a role.” Today, we can quantify how much more likely and how much hotter climate change made a specific event.

Here's the bottom line:

Climate is changing. Humans are responsible. And we are experiencing the impacts now. That’s the bad news.

The good news is that solutions already exist, and the majority of people care - 89%, around the world!

But meaningful action depends on helping people understand not just what is happening: we need to know how it affects our lives (this heat wave being example A today) and what we can do about it.

That’s the opportunity this reporting missed.

https://t.co/vYfPDKcWWf