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Ed Yong is not here ✓

@edyong209 · Bay Area · joined 30 Jan 2009

Science writer. Author of AN IMMENSE WORLD. Not on Twitter any more. Find me on Bluesky or through my newsletter: https://t.co/sUMoqFWZWg.

333 538Followers
1 604Following
116 409Posts total
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Ed Yong is not here ✓@edyong209
@edyong209 Bold move, I’ll check it out. 1 views · 0 likes · 0 reposts · 0 replies Open on X →
Ed Yong is not here ✓@edyong209
@edyong209 Everyone's gotta read that. Curious now! 1 views · 0 likes · 0 reposts · 0 replies Open on X →
Ed Yong is not here ✓@edyong209
AN IMMENSE WORLD is out in paperback today 🥳 https://t.co/T5DnJwu1ee
67.5K views · 446 likes · 40 reposts · 112 replies Open on X →
Ed Yong is not here ✓@edyong209
I absolutely adored CHAIN-GANG ALL-STARS, by Nana Kwame Adjei-Brenyah. A devastating satire about the US carceral state taken to its logical conclusion: televised gladiatorial combat. A profound love story about finding hope & dignity amid oppression. https://t.co/PtPSdpAqH4
A copy of the book Chain Gang All Stars
82.7K views · 298 likes · 41 reposts · 110 replies Open on X →
Ed Yong is not here ✓@edyong209
I urge you to read this. 194K views · 1.1K likes · 277 reposts · 112 replies Open on X →
Ed Yong is not here ✓@edyong209
The paperback of AN IMMENSE WORLD is out in just a few weeks (Aug 29), and you can preorder it now! Cast includes: 🐝🦆🐒🦖🐬🦑🐘🦚🦦🐕🦂🕷️🦇🦉🐍🦅🪱🐋🐊🦭🦈🐟🦟 https://t.co/DvT9HnJaPK https://t.co/TTc3JibOWe
An ad for An Immense World
101.2K views · 543 likes · 55 reposts · 109 replies Open on X →
Ed Yong is not here ✓@edyong209
PS: Just so everyone who sees this thread is aware of this standing offer: https://t.co/mdZgZB5cEu 50.4K views · 572 likes · 80 reposts · 20 replies Open on X →
Ed Yong is not here ✓@edyong209
@edyong209 For me a horrible aspect of PEM is that it punishes all these good feelings of happiness, excitement, motivation and the satisfaction of achieving something. I crave these feelings but they tend to be a big trigger of PEM because they lead to more activity. 4K views · 134 likes · 8 reposts · 1 replies Open on X →
Ed Yong is not here ✓@edyong209
Sigh. Some of you seem to be able to read this during the 24-hr free period, & some are still bumping into the paywall. Look, if anyone w/ long COVID or ME/CFS needs to read this and can't, email edyong210@gmail.com and I'll personally send you a copy. https://t.co/GoJIGbRh7L 413.2K views · 2.4K likes · 611 reposts · 83 replies Open on X →
Ed Yong is not here ✓@edyong209
Oh and I have recorded an audio version of the fatigue piece for people whose symptoms make it hard to read long pieces. There's some processing to do which is out of my hands but I hope it goes up later today. End/ 75.6K views · 1.6K likes · 146 reposts · 35 replies Open on X →
Ed Yong is not here ✓@edyong209
The fatigue piece is intended as a companion to last year’s one on brain fog. They’re both biographies of deeply misunderstood symptoms. I wanted to do them back to back but life got in the way. I’m glad both now exist, and I hope they help. 11/ https://t.co/Gq8iylgNqZ 82.1K views · 1.4K likes · 272 reposts · 17 replies Open on X →
Ed Yong is not here ✓@edyong209
People with long COVID and ME/CFS face *so much* disbelief. But the reality and severity of their experiences is so obvious if you actually talk to them, supported by the scientific literature, and deserving of empathy and support. 10/ https://t.co/oFWb6Flyh0 71.1K views · 1.2K likes · 265 reposts · 5 replies Open on X →
Ed Yong is not here ✓@edyong209
There’s no easy way out of this. Most treatments are about symptom management. Pacing—a strategy for keeping your activity levels below the levels that cause debilitating crashes—is crucial, but also very hard esp since our society isn’t set up for it. 9/ https://t.co/oFWb6Flyh0
Pacing is more challenging than it sounds. Practitioners can’t rely on fixed routines; instead, they must learn to gauge their fluctuating energy levels in real time, while becoming acutely aware of their PEM triggers. Some turn to wearable technology such as heart-rate monitors, and more than 30,000 are testing a patient-designed app called Visible to help spot patterns in their illness. Such data are useful, but the difference between rest and PEM might be just 10 or 20 extra heartbeats a minute—a narrow crevice into which long-haulers must squeeze their life. Doing so can be frustrating, because pacing isn’t a recovery tactic; it’s mostly a way of not getting worse, which makes its value harder to appreciate. Its physical benefits come at mental costs: Walks, workouts, socializing, and “all the things I’d do for mental health before were huge energy sinks,” Vogel told me. And without financial stability or social support, many long-haulers must work, parent, and care for themselves
“Our society is not set up for pacing,” Oller added. Long-haulers must resist the enormous cultural pressure to prove their worth by pushing as hard as they can. They must tolerate being chastised for trying to avert a crash, and being disbelieved if they fail. “One of the most insulting things people can say is ‘Fight your illness,’” Misko said. That would be much easier for her. “It takes so much self-control and strength to do less, to be less, to shrink your life down to one or two small things from which you try to extract joy in order to survive.” For her and many others, rest has become both a medical necessity and a radical act of defiance—one that, in itself, is exhausting.
45.2K views · 942 likes · 169 reposts · 8 replies Open on X →
Ed Yong is not here ✓@edyong209
Note also that long-haulers might not know the biochemical specifics of their symptoms, but are uncannily good at capturing those underpinnings through metaphor. As ever, patients are the most important sources of knowledge. 8/ https://t.co/oFWb6Flyh0 https://t.co/U0kqkV1urM
Long-haulers might not know the biochemical specifics of their symptoms, but they are uncannily good at capturing those underpinnings through metaphor. People experiencing autonomic blood-flow problems might complain about feeling “drained,” and that’s literally happening: In POTS, a form of dysautonomia, blood pools in the lower body when people stand. People experiencing metabolic problems often use dead-battery analogies, and indeed their cellular batteries—the mitochondria—are being damaged: “It really feels like something is going wrong at the cellular level,” Oller told me. Attentive doctors can find important clues about the basis of their patients’ illness hiding amid descriptions that are often billed as “exaggerated or melodramatic,” Dujardin said.
38.4K views · 951 likes · 158 reposts · 5 replies Open on X →
Ed Yong is not here ✓@edyong209
Contrary to popular belief, long COVID & ME/CFS are not mystery diseases. There’s plenty of evidence for at least two major pathways that might cause extreme fatigue and PEM--one neurological, one metabolic. 7/ https://t.co/oFWb6Flyh0 https://t.co/qjdxMcfBVP
First, most people with energy-limiting chronic illnesses have problems with their autonomic nervous system, which governs heartbeat, breathing, sleep, hormone release, and other bodily functions that we don’t consciously control. When this system is disrupted—a condition called “dysautonomia”—hormones such as adrenaline might be released at inappropriate moments, leading to the wired-but-tired feeling. People might suddenly feel sleepy, as if they’re shutting down. Blood vessels might not expand in moments of need, depriving active muscles and organs of oxygen and fuel; those organs might include the brain, leading to cognitive dysfunction such as brain fog.
Second, many people with long COVID and ME/CFS have problems with generating energy. When viruses invade the body, the immune system counterattacks, triggering a state of inflammation. Both infection and inflammation can damage the mitochondria—the bean-shaped batteries that power our cells. Malfunctioning mitochondria produce violent chemicals called “reactive oxygen species” (ROS) that inflict even more cellular damage. Inflammation also triggers a metabolic switch toward fast but inefficient ways of making energy, depleting cells of fuel and riddling them with lactic acid. These changes collectively explain the pervasive, dead-battery flavor of fatigue, as “the body struggles to generate energy,” Bindu Paul, a pharmacologist and neuroscientist at Johns Hopkins, told me. They might also explain the burning, poisoned feelings that patients experience, as their cells fill with lactic acid and ROS.
75.9K views · 1.3K likes · 331 reposts · 8 replies Open on X →
Ed Yong is not here ✓@edyong209
Why this dismissal? This piece offers a brief cultural history, but there are three main factors—reductionism, sexism, and capitalism—all blending together into a cocktail of stigma. 6/ https://t.co/oFWb6Flyh0 https://t.co/iCxQzRCy3y
Dujardin, the English professor who is (very slowly) writing a cultural history of fatigue, thinks that our concept of it has been impoverished by centuries of reductionism. As the study of medicine slowly fractured into anatomical specialties, it lost an overarching sense of the systems that contribute to human energy, or its absence. The concept of energy was (and still is) central to animistic philosophies, and though once core to the Western world, too, it is now culturally associated with quackery and pseudoscience. “There are vials of ‘energy boosters’ by every cash register in the U.S.,” Dujardin said, but when the NIH convened a conference on the biology of fatigue in 2021, “specialists kept observing that no standard definition exists for fatigue, and everyone was working from different ideas of human energy.” These terms have become so unhelpfully unspecific that our concept of “fatigue” can encompass a wide array of states including PEM and idleness, and can be heavily influ
As the historian Emily K. Abel notes in Sick and Tired: An Intimate History of Fatigue, many studies of everyday fatigue at the turn of the 20th century focused on the weariness of manual laborers, and were done to find ways to make those workers more productive. During this period, fatigue was recast from a physiological limit that employers must work around into a psychological failure that individuals must work against. “Present-day society stigmatizes those who don’t Push through; keep at it; show grit,” Dujardin said, and for the sin of subverting those norms, long-haulers “are not just disbelieved but treated openly with contempt.” Fatigue is “profoundly anti-capitalistic,” Jaime Seltzer, the director of scientific and medical outreach at the advocacy group MEAction, told me.
Energy-limiting illnesses also disproportionately affect women, who have long been portrayed as prone to idleness. Dujardin notes that in Western epics, women such as Circe and Dido were perceived harshly for averting questing heroes such as Odysseus and Aeneas with the temptation of rest. Later, the onset of industrialization turned women instead into emblems of homebound idleness while men labored in public. As shirking work became a moral failure, it also remained a feminine one.
52.9K views · 1K likes · 192 reposts · 8 replies Open on X →
Ed Yong is not here ✓@edyong209
PEM *can* be objectively measured, and yet is often dismissed because it so thoroughly inverts the dogma that exercise is good for you & you should push through ill health. Here, doing that can make you much worse. 5/ https://t.co/oFWb6Flyh0 https://t.co/2VG6e06ISz
That price is both real and measurable. In cardiopulmonary exercise tests, or CPETs, patients use treadmills or exercise bikes while doctors record their oxygen consumption, blood pressure, and heart rate. Betsy Keller, an exercise physiologist at Ithaca College, told me that most people can repeat their performance if retested one day later, even if they have heart disease or are deconditioned by inactivity. People who get PEM cannot. Their results are so different the second time around that when Keller first tested someone with ME/CFS in 2003, “I told my colleagues that our equipment was out of calibration,” she said. But she and others have seen the same pattern in hundreds of ME/CFS and long-COVID patients—“objective findings that can’t be explained by anything psychological,” David Systrom, a pulmonologist at Brigham and Women’s Hospital, told me. “Many patients are told it’s all in their head, but this belies that in spades.” Still, many insurers refuse to pay for a second test,
Oller thinks this dismissal arises because PEM inverts the dogma that exercise is good for you—an adage that, for most other illnesses, is correct. “It’s not easy to change what you’ve been doing your whole career, even when I tell someone that they might be harming their patients,” she said. Indeed, many long-haulers get worse because they don’t get enough rest in their first weeks of illness, or try to exercise through their symptoms on doctors’ orders. People with PEM are also frequently misdiagnosed. They’re told that they’re deconditioned from being too sedentary, when their inactivity is the result of frequent crashes, not the cause. They’re told that they’re depressed and unmotivated, when they are usually desperate to move and either physically incapable of doing so or using restraint to avoid crashing. Oller is part of a support group of 1,500 endurance athletes with long COVID who are well used to running, swimming, and biking through pain and tiredness. “Why would we all ju
73.6K views · 1.1K likes · 267 reposts · 4 replies Open on X →
Ed Yong is not here ✓@edyong209
Post-exertional malaise—the cardinal symptom of ME/CFS—is distinct & worse. Less a symptom than a physiological state. After gentle physical/mental activity, your batteries aren’t drained but missing entirely. PEM is the annihilation of possibility. 4/ https://t.co/oFWb6Flyh0 htt
Post-exertional malaise, or PEM, is the defining trait of ME/CFS and a common feature of long COVID. It is often portrayed as an extreme form of fatigue, but it is more correctly understood as a physiological state in which all existing symptoms burn more fiercely and new ones ignite. Beyond fatigue, people who get PEM might also feel intense radiant pain, an inflammatory burning feeling, or gastrointestinal and cognitive problems: “You feel poisoned, flu-ish, concussed,” Misko said. And where fatigue usually sets in right after exertion, PEM might strike hours or days later, and with disproportionate ferocity. Even gentle physical or mental effort might lay people out for days, weeks, months. Visiting a doctor can precipitate a crash, and so can filling out applications for disability benefits—or sensing bright lights and loud sounds, regulating body temperature on hot days, or coping with stress. And if in fatigue your batteries feel drained, in PEM they’re missing entirely. It’s the
Medical professionals generally don’t learn about PEM during their training. Many people doubt its existence because it is so unlike anything that healthy people endure. Mary Dimmock told me that she understood what it meant only when she saw her son, Matthew, who has ME/CFS, crash in front of her eyes. “He just melted,” Dimmock said. But most people never see such damage because PEM hides those in the midst of it from public view. And because it usually occurs after a delay, people who experience PEM might appear well to friends and colleagues who then don’t witness the exorbitant price they later pay.
93.7K views · 1.2K likes · 298 reposts · 10 replies Open on X →
Ed Yong is not here ✓@edyong209
When long-haulers talk about their fatigue, they often hear “Oh I’m tired too”. But theirs is utterly different to the everyday version healthy people get. More severe. Very hard to push through (& costly if you try). Not cured by sleep. Multifaceted. 3/ https://t.co/oFWb6Flyh0 h
Fatigue is among the most common and most disabling of long COVID’s symptoms, and a signature of similar chronic illnesses such as myalgic encephalomyelitis (also known as chronic fatigue syndrome or ME/CFS). But in these diseases, fatigue is so distinct from everyday weariness that most of the people I have talked with were unprepared for how severe, multifaceted, and persistent it can be. For a start, this fatigue isn’t really a single symptom; it has many faces. It can weigh the body down: Lisa Geiszler likens it to “wearing a lead exoskeleton on a planet with extremely high gravity, while being riddled with severe arthritis.” It can rev the body up: Many fatigued people feel “wired and tired,” paradoxically in fight-or-flight mode despite being utterly depleted. It can be cognitive: Thoughts become sluggish, incoherent, and sometimes painful—like “there’s steel wool stuck in my frontal lobe,” Gwynn Dujardin, a literary historian with ME, told me.
And though normal fatigue is temporary and amenable to agency—even after a marathon, you can will yourself into a shower, and you’ll feel better after sleeping—rest often fails to cure the fatigue of long COVID or ME/CFS. “I wake up fatigued,” Letícia Soares, who has long COVID, told me.
69K views · 1.2K likes · 243 reposts · 7 replies Open on X →
Ed Yong is not here ✓@edyong209
First, an important note. I’ve been told that this piece will be free to read for 24 hours, but will then go behind the paywall. Best I could do. If you’re not a subscriber and this is useful to you or your loved ones, I’d suggest saving a copy ASAP. 2/ https://t.co/oFWb6Fl0rs 166.9K views · 1.4K likes · 388 reposts · 33 replies Open on X →
Ed Yong is not here ✓@edyong209
🛑I wrote about what “fatigue” really means for people with long COVID and ME/CFS, and why this profoundly debilitating symptom is so often misunderstood and trivialized. (This piece also covers PEM.) 1/ https://t.co/oFWb6Flyh0 2.2M views · 7.5K likes · 3.2K reposts · 246 replies Open on X →

Growth & engagement

How the posts we collected actually performed: views and reaction rate post by post, what the audience did with them, and where the follower count goes.

Views per post

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Last 14 collected posts, oldest on the left. The scale is logarithmic: one post can outrun the rest a hundred times over.

Engagement rate per post

2.91%27 Jul
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0.75%
3.55%
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0.72%5 Aug
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Reactions — likes, reposts, replies and quotes — divided by views.

What the audience does

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