Suzanne Le Feuvre

[Manuel Ruiz @manruipa]

‼️⚠️I sincerely appreciate that you acknowledged this mistake.

Recognizing errors publicly is not easy, and I respect that.

But I also think this is why I have to ask you to look again at the much bigger issue: the WIRED article itself.

Because the problem is not only one misread study. The broader framing of that article is already causing real harm.

I say this sincerely: I know there is a person behind every account, with their own intentions, limits, mistakes and blind spots. We can all get things wrong. I do not believe the right response is to destroy someone when they are willing to correct mistakes.

But the article needs correction.

Over the last few days, I have received comments and private messages from patients saying that family members, people around them, and even clinicians who do not understand Long COVID are now using this narrative against them.

They are being told that they are not recovering because they do not want to.
Because they are not exercising.
Because they are not doing psychological therapy.
Because they are “stuck” in the wrong mindset.

You may not fully realize the damage that kind of framing can do if you have not lived this disease closely.

For many patients, their environment had finally started to believe them because biomedical research was moving forward. Years of studies showing immune, vascular, autonomic, metabolic and muscular abnormalities were slowly helping people understand that this is a real organic disease.

And then a simple, attractive narrative appears again:

maybe it is mind-body.
maybe patients are afraid of exercise.
maybe recovery is being blocked by beliefs.

That kind of framing can erase years of progress in one family, one workplace, one clinic.

Because when a disease is complex and poorly understood, the easiest story is always the old one: maybe the problem is psychological.

ME/CFS patients have lived with this harm for decades. Many Long COVID patients are now experiencing the same thing.

And this pressure is not harmless.

Patients lose their health.
They lose their jobs.
They lose their social lives.
They lose their independence.

And then, when public narratives suggest that maybe they are not recovering because of their mindset, they can also lose the last thing they had left: being believed and supported.

That pressure can become unbearable.

Some patients end up taking their own lives because they feel abandoned, disbelieved and blamed for an illness they did not choose.

Those lives matter.

They matter as much as yours or mine.

And these patients deserve exactly the same dignity, seriousness and protection that we give to patients with any other recognized disease.

Today, nobody would tell a patient with multiple sclerosis that they remain ill because they do not want to recover, because they do not exercise enough, or because they have not done the right psychological therapy.

Nobody would frame MS as a failure of mindset just because fatigue, stress sensitivity, cognitive symptoms or depression can appear in the disease.

So why is this acceptable with Long COVID or ME/CFS?

This is not about rejecting psychological support.
It is not about denying that the nervous system is involved.
It is not about saying every recovery story is false.

It is about not confusing support with cure.
Not confusing subjective improvement with disease modification.
Not confusing heterogeneous biology with “it might be in your head.”
Not using recovery anecdotes to reframe a post-infectious disease in a way that patients will pay for socially, medically and personally.

I genuinely believe people can reconsider things. None of us has to know everything about every field. Mistakes happen.

But when a mistake has consequences for a vulnerable patient community, correction matters.

The same criticism I have made these days, I would gladly replace with support if you helped correct the framing and the harm caused by the article.

Patients deserve mechanisms.

[Maxi @AllForProgress_]

In a workshop in Ulverston, on the edge of the Lake District, a few dozen people are the last in Britain who can do a thing this country once did better than anywhere on earth: take molten glass, blow it by lung and hand, and cut it until it throws light like nothing else made by man.

The company is called Cumbria Crystal. Its craftsmen were brought up from Stourbridge in 1976, out of the old heartland of English glass - and then, one by one between 1990 and 2007, every great Stourbridge house shut its doors, until a skill that once had its capital across the West Midlands had its last redoubt in a single building in Cumbria.

This year, Heritage Crafts placed hand-cut crystal on its Red List of Critically Endangered Crafts. One more workshop gone, one more retirement that goes unreplaced, and three centuries of mastery simply end - it goes the way of stonemasonry or, you probably wouldn't believe is increasingly the case, metalwork.

There is a detail here on which the picture revolves. The crystal on the tables of British embassies, the glass set before presidents and kings when this country wishes to show the world what it is, comes in good part from that same endangered workshop in Ulverston. We use the craft to impress the world and cannot trouble ourselves to keep it alive at home. The glass that says "look what Britain can do" is being quietly permitted to become the glass that says "look what Britain used to be able to do."

There is no villain in this, not exactly. No minister set out to kill English crystal. It is dying the way most things die here now - by inattention, by an energy bill the kiln can barely meet, by a culture that spent two generations teaching the young that working with your hands was a lesser destiny, by the lazy faith that someone, somewhere, would always keep the old skills going so the rest of us needn't think about it.

Progress takes the opposite view of a thing like this. A skill is capital - the most patiently accumulated capital a country owns - and a nation that lets its mastery lapse is poorer in a way no quarterly figure will ever record. And a nation that barrels its energies into skill capital is rich.

Our Hallmark system exists to stamp such skills, to honour them, and to pay the people who hold them to teach the next hands, because the distance between a living craft and a glass case in a museum is exactly one generation that could not afford to pass it on.

The men and women in Ulverston still know how it is done. For now. The only question is whether a country that can fill an embassy, an office, a home, with their work can be bothered to ensure that, fifty years from now, there is still anyone left who can make the next set.

[Dr Helen Fry | WWII Historian @DrHelenFry]

Did you know that the first women to land on the Normandy beachhead in June 1944 were nurses of Queen Alexandra’s Imperial Nursing Service?

Their task was to establish a field hospital for 600 wounded soldiers.

They succeeded.

Please remember these heroines who saved lives:

[Manuel Ruiz @manruipa]

⚠️After seeing the response from patients, clinicians and scientists, I think this needs to be said clearly:

Re-promoting an article that has caused so much harm to the Long COVID community is not brave journalism.

It is irresponsible.

This article did not simply “open a difficult conversation.” It amplified a deeply damaging frame: that maybe patients are rejecting the uncomfortable truth that CBT, exercise and “mind-body” approaches are the way forward.

But when you present a complex post-infectious disease through that lens, without properly separating psychological support from biological treatment, you are not helping patients.

You are making their lives harder.

These narratives do not stay inside an article.

They reach families.
They reach employers.
They reach disability assessors.
They reach doctors who already know very little about Long COVID.
They reach people who are looking for an excuse to say: “maybe it is just anxiety,” “maybe you are afraid of exercise,” “maybe you are keeping yourself sick.”

That has consequences.

Social consequences.
Medical consequences.
Workplace consequences.
Psychological consequences.

Patients with Long COVID are already fighting disbelief, lack of biomarkers in routine care, lack of approved treatments, disability, isolation and medical neglect.

Using their suffering to generate clicks while repackaging old psychosomatic narratives in modern “mind-body” language is not courageous.

It is cruel.

The problem is not talking about the nervous system.

The problem is turning nervous system involvement into a story about beliefs, fear, trauma or patients refusing to accept recovery.

The problem is using recovery anecdotes as if they establish causality.

The problem is ignoring those who worsened with exercise.

The problem is presenting PEM caution as dogma.

The problem is being much more generous with “brain retraining” narratives than with the biomedical evidence already showing immune, vascular, autonomic, metabolic and muscular abnormalities in Long COVID.

If a journalist wants to write about Long COVID, they have a responsibility to understand the history of harm done to post-infectious patients.

Because this is not new.

ME/CFS patients have lived this for decades.

“Unexplained” became “psychological.”
“Normal routine tests” became “nothing is wrong.”
“Supportive care” became “cure.”
“Exercise” became “rehabilitation,” even when patients were crashing.

And now the same mistake is being repeated with Long COVID.

Patients are not angry because they reject science.

They are angry because they recognize the pattern.

They have seen what happens when medicine turns biology it cannot yet measure into psychology.

So no, this is not “a way forward.”

A way forward would be stratification, biomarkers, mechanistic trials, antivirals, immunology, dysautonomia research, PEM-safe protocols, autoantibody studies, vascular biology, tissue persistence, metabolism and serious clinical phenotyping.

A way forward would be listening to all patients, including those harmed by exercise and psychologizing narratives.

A way forward would be scientific humility: admitting what we still do not know without turning unexplained biology into psychology.

Not click-driven repetition of the same ideas that have already harmed post-infectious patients for decades.

[Niall Harbison @NiallHarbison]

What a difference 24 hours makes ❤️

[Dr Elisa Perego @elisaperego78]

We must be crystal clear about a few points. Long Covid is not a "poorly understood neuroimmune disorder" with no biomarkers. It is a widely studied biological medical condition. Pathology spanning basically all body systems is well documented, with damage in situ across organs

[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

[tern @1goodtern]

A friend passed this to me, saying it might be helpful - it's about getting help on Long Covid from your GP, it's for a UK setting, but some of it will be applicable anywhere - read the note at the end for more too.

"I work in AI. I used it to research and write my mum a letter about her Long COVID. Her GP called her the next day after 3 years of being dismissed!
*Reposting here as myself since it blew up in another support group and people really want help with this… feel free to add/DM me.*
So I work in AI, specifically in healthcare tech. So when my mum had been fobbed off by her GP for the third year in a row about her Long COVID, I figured I should actually do something useful with what I know.
This isn't about gaming the system or bending rules. Everything I'm sharing here is publicly available on NHS and government websites. I just used AI to find it, understand it, and turn it into something a GP couldn't easily brush off.
Here's what most people don't know. The NHS publishes detailed guidelines that GPs are expected to follow. NICE published a specific Long COVID guideline called NG188 that sets out exactly what a GP has to do when a patient comes to them with ongoing post-Covid symptoms. Most patients have never heard of it. Most GPs don't follow it unless someone pushes them on it.
The other thing most people don't know: verbal dismissal is easy to ignore. A formal written letter that references specific guidelines creates a paper trail. The GP now has a documented duty of care they're expected to respond to. It genuinely changes everything.
My mum is 61. Not remotely tech savvy. She would never have found any of this herself. I spent about 20 minutes using AI to pull the relevant guidelines, match them to her situation, and draft a letter. She sent it to her GP by email on a Tuesday. Her GP called her on Wednesday afternoon. First time in three years a GP had called her. She now has a referral to a Long Covid clinic and a written management plan, after years of being told it was probably anxiety or just her age.
Posting her letter below with her details redacted. Copy it, adapt it to your situation, send it by email not in person. You need a timestamp. You need a record. That's what actually forces a response.
───
[Her letter, personal details redacted]
████████████████
████████████████
████████, ██████
██ ██████ 2025
Dr ████████████
████████████ Surgery
████████████████
████████, ██████
Re: Formal written request for Long COVID assessment and personalised management plan
Dear Dr ████████,
I am writing to formally request appropriate assessment and management for post-COVID-19 syndrome (Long COVID), and to create a written record of this request for my medical file.
I contracted COVID-19 in ████████ 2022 and have experienced the following ongoing symptoms for over three years:
• Severe fatigue and post-exertional malaise, symptoms worsen significantly following any physical or cognitive exertion
• Cognitive dysfunction, difficulty with memory, concentration, and word retrieval
• Breathlessness disproportionate to exertion
• Heart palpitations and episodes of tachycardia
• Disrupted sleep despite significant fatigue
• Generalised pain and joint discomfort
These symptoms have substantially impaired my ability to work, maintain daily activities, and quality of life.
CLINICAL BASIS FOR THIS REQUEST
NICE guideline NG188, COVID-19 rapid guideline: managing the long-term effects of COVID-19, was developed jointly by NICE, SIGN and the Royal College of General Practitioners. It applies to any patient with new or ongoing symptoms four or more weeks after acute COVID-19.
Under NG188 section 5.2.1, GPs are expected to use a multidisciplinary approach to guide rehabilitation, including physical, psychological and psychiatric aspects of management.
Under NG188 section 5.2.2, GPs must work with the patient to develop a personalised rehabilitation and management plan, which must be recorded in writing. NICE states explicitly that healthcare professionals are expected to take this guideline fully into account. This is not optional guidance.
Under GMC Good Medical Practice (2024), where a GP cannot adequately manage a patient's condition, they are required to refer to a specialist with the relevant expertise.
Under the NHS Constitution, I have the right to be referred to an appropriate specialist where my GP is unable to provide the required clinical management.
I have not received a personalised management plan or specialist referral in three years of presenting with these symptoms.
WHAT I AM FORMALLY REQUESTING
1. A holistic clinical assessment consistent with NICE NG188, including physical, psychological and functional domains
2. A personalised rehabilitation and management plan recorded in writing, as required under NICE NG188 section 5.2.2
3. Referral to the Long COVID clinic or appropriate multidisciplinary rehabilitation service
4. A written response to this letter within 14 days
I would like this letter to be added to my medical record. I am not requesting anything outside published NHS guidelines. I am asking for what those guidelines state I am entitled to receive.
Yours sincerely,
████████████████
Date of birth: ██/██/████
NHS number: ███ ███ ████
Based on: NICE NG188 (January 2024) | GMC Good Medical Practice (2024) | NHS Constitution (2023)
*Verify current guidelines at https://t.co/1G9ny67PrQ before sending.*
───
Same approach works for basically any condition where you're being dismissed. MCAS (I am currently writing myself a letter to escalate my own issues with this), fibromyalgia, EDS, POTS, chronic fatigue. The escalation pathways exist for all of them, most people just don't know how to use them.
If it’s useful I could build a tool that does this automatically for you. You answer a few questions about your condition, it finds the relevant guidelines and drafts the letter for you. If that sounds useful, DM me or comment. Happy to write one manually for anyone in the meantime.
Not medical advice! Keep seeing your GP. Call 111 if anything gets worse."

[Prof Peter Hotez MD PhD DSc(hon) @PeterHotez]

Remember Ebola transmission is unusual, unlike smallpox or measles when transmission occurs early in the illness, Ebola transmits at the late stage after it shuts down our innate interferon responses. That’s why it’s healthcare workers caring for moribund patients who become infected. I would be more than happy to spend time with the DRC team and hang out with them. You won’t get Ebola playing futbol or sitting with the Congolese at NRG

[The Bee Guy @the_beeguy]

‘Are these very small #bumblebees we’re seeing out foraging around now a specific species?’

A good question.
Thanks for asking us.

Here’s a brief thread to explain these diminutive beauties.

Please #retweet/#share.
A small ask for the small bumblers.
🐝
#bees
#nature
1/9

[Prof Peter Hotez MD PhD DSc(hon) @PeterHotez]

1/n: I could be wrong, of course, but my take about this hantavirus outbreak is less about the actual outbreak and more about what it means in the context of the last two decades and moving forward. Let me explain...

[Ed Hawkins @ed_hawkins]

Spiralling global temperatures (1850-2026)

It is exactly 10 years since I first put this animated graphic of changes in global temperature online. #ClimateSpiral

It instantly went viral.

People watched it over and over again.

It still offers the power to shock a decade on.

[Niall Harbison @NiallHarbison]

https://t.co/frrd6fBx6A

[The Royal Family @RoyalFamily]

Out of this world! 🪐✨

As a special surprise during His Majesty’s last engagement in Bermuda, The King was shown a video message from Canadian astronaut Colonel Jeremy Hansen, filmed during his journey around the moon on Artemis II.

Colonel Hansen thanked The King for his well wishes and reflections on environmental stewardship, ahead of their historic mission. 🌒

In a bid to ensure space is safe and clutter-free, the UK Space Agency is launching “Project Nova” – installing five telescopes sites worldwide to track space debris and support international sustainability.

🇧🇲 Bermuda is the first of those locations – and this morning, The King officially launched the project.

In 2022, The King’s Sustainable Markets Initiative launched the ‘Astra Carta’ to act as a framework to inspire sustainability across the space industry.

[Liam's LC/ME Journey @liamsLCjourney]

Yesterday, I stepped down as CEO of my company. Not because I wanted to, but because in mid-January, I became bedbound with Stage 4 ME.

For the past three months, I've watched my team run the company I built while I just lay here, unable to live the high-impact life I was used to.

At first, I vowed to get better so I could return to even part-time work. But as I gradually and inconsistently improved over months, I became radicalized for a different cause:

Not a single person deserves to live like this. But yet we do, and and no one will save us but ourselves.

So today, I begin a new role: I will dedicate the next year of my life - 18 waking hours a day - entirely to this community.

I suppose it's time I introduce myself (I've also attached a photo of me, in bed, feeling much worse than I look):
- Out of college, I co-founded a magazine that took me around the world doing sports journalism and broadcasting.
- Over the past 7 years, I have assembled the greatest team to build and run a sports tech company from the ground up
- In the early days of the pandemic, I co-founded and led @getusppe, a team of hundreds, to deliver 17 million+ pieces of PPE to healthcare workers.
- I specialize in acting with urgency, seeing gaps, and connecting people to fill them. And most of all, in uniting and building community.

I have accomplished a ton in my 35 years on earth before I got sick, but Long COVID and ME are, by an order of magnitude, the biggest challenges I have faced.

But when there are so many gaps, there's simply no time to complain. We must roll our compression-wear up and get to work. So here is what I have planned:
- Guides and essays:
- The Severe PEM Crash Survival Guide
- What's the Deal With Brain Retraining?
- So You Have Long COVID, Now What?
- ...and so many more!
- Treatment Experience Surveys to fill the gap between random Reddit anecdotes and slow clinical trials (GLP-1 data released in two weeks)
- The first comprehensive AI analysis of all publicly posted recovery stories to look for trends and correlations
- Helping a fellow patient and test expert publish the first interactive and comprehensive testing guide for ME
- Helping a fellow patient increase the visibility of Stage 4/5 patients as the faces of ME
- Creating a network of the highest agency patients working on these conditions to mutually share information, support, and unblock each other
- Creating Long COVID and ME microgrants to fund people to work on small but impactful projects
- Incubating and raising funding for founders who want to start non-profits and companies (let five more Amaticas flourish!)
- Overall, pouring my heart out to support every single person who is interested in working for the betterment of this community (especially where others are far better than me, like science and advocacy!)

No one is going to do this work for us. Not doctors, researchers, or government. This must be patient-led.

Want to join the movement? Send me a DM, and let's figure out what we can do together. Time to get to work.

[Yaroslava @strategywoman]

It’s the original Helmet of Memory, with images of Ukrainian athletes killed by russia.

Ukrainian skeleton racer Vladyslav Heraskevych wanted to compete with it at the Winter Olympics. He was disqualified.

I saw it today and want to show it to the world.

[The Royal Family @RoyalFamily]

“Sometimes the smallest things take up the most room in your heart.” – A. A. Milne

As we mark the 100th anniversary of the beloved Winnie-the-Pooh stories, The Queen has presented a very special gift to the New York Public Library, reuniting baby Roo with his friends from the 100 Acre Wood.

The Library is home to the original collection of toys owned by Christopher Robin Milne, son of A.A. Milne, which inspired the characters in the beloved Winnie-the-Pooh series. The collection is missing Roo, the baby kangaroo who was lost in an orchard in the 1930s.

The new addition of Roo was created by Shropshire-based company Merrythought, who also created the original toys.

👀 Watch Roo’s great adventure travelling from Buckingham Palace onboard Their Majesties’ flight to his new home in New York.

[Weijia Jiang @weijia]

The Hilton donated the ~2600 dinners that went unserved at WHCD. They freeze dried the steak and lobster for longer shelf life before giving them to 2 shelters for abused women and children. HUGE thank you to the staff that worked through the night under terrible circumstances.

[Anish Moonka @anishmoonka]

A parasite that has been eating people for 3,500 years is about to be wiped off the planet. It infected 3.5 million people in 1986. Last year, it infected 10. And I have not seen it make a single front page.

It is called Guinea worm. You drink contaminated water from a pond in a poor village. A year later, a worm up to three feet long starts coming out of your leg through a burning blister. There is no pill that stops it and no surgery that works. You wrap the worm around a stick and pull it out slowly, over days or weeks, inch by inch. If you rush, the worm breaks inside you and causes a fresh infection.

Guinea worm is ancient. Preserved worms have been pulled out of Egyptian mummies from around 1000 BCE. The Ebers Papyrus, an Egyptian medical scroll from 1550 BCE, describes pulling the worm out with a stick. For three and a half thousand years, that was the best humans could do.

Then in 1986, public health workers decided to kill the parasite off. They had no vaccine and no drug. What they had was cheap cloth water filters and a small army of volunteers willing to walk from village to village for decades.

The plan was simple. Give everyone who drinks from a pond a cloth filter to strain out the tiny water fleas that spread the parasite. Then send volunteers walking house to house, year after year, teaching people how to use the filters and keeping anyone with an emerging worm out of the water.

It worked. From 3.5 million cases a year to 10. Four were in Chad, four in Ethiopia, two in South Sudan. The other four countries where the worm used to be common, Angola, Cameroon, the Central African Republic, and Mali, had zero human cases for the second year in a row. The World Health Organization has already certified 200 countries as Guinea worm free. Six are left.

The last hurdle is dogs. Cameroon had 445 infected animals last year and Chad had 147, so a lot of the remaining work is on animals, not humans. Strays get leashed, and crews treat ponds to kill any remaining worms. The campaign keeps watching until the number hits zero.

When Guinea worm hits zero, it becomes the second human disease ever erased from the planet. The first was smallpox. It will also be the first parasite humans have ever wiped out, and the first disease ever ended without a single dose of medicine. Volunteers walked village to village with cloth filters for 40 years. Now a plague from the age of the pharaohs is about to be gone.

[ALASTAIR CAMPBELL @campbellclaret]

What fantastic news from Hungary. Proof that if you stand up to it right wing kleptocratic populist authoritarianism can be beaten. Orban will now flee somewhere with his wealth. But this is more than a bad night for him. It is a bad night for Putin who as in Moldova spent a fortune trying to rig it. It is a bad night for Trump. It is a bad night for Vance and Rubio who believed that their mere presence in Budapest would swing the vote Orban’s way. They helped Magyar! . It is a bad night for Farage the AfD and Le Pen because it shows that when their brand of politics is exposed to serious opposition and scrutiny it collapses. Magyar is far from the perfect leader but my God he deserves all the congratulations coming his way for ousting Orban and showing how it can be done. He now has the tough job of dismantling the corrupt systems and bodies installed over 16 years. The people of Hungary deserve our thanks for showing these people can be beaten. And Zelensky now deserves far greater support from Europe.