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Ed Yong isn’t really here Profile picture
@edyong209
Jul 27 • 13 tweets • 7 min read Twitter logo Read on Twitter
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🛑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/

theatlantic.com/health/archive…
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/ theatlantic.com/health/archive…
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/yqZoRGtyxAtheatlantic.com/health/archive…

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, wh...
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.
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/sJpE2OA5zhtheatlantic.com/health/archive…

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 dispr...
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 th...
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/2VG6e06ISztheatlantic.com/health/archive…

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...
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 inactivit...
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/iCxQzRCy3ytheatlantic.com/health/archive…


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....
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 jus...
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.
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/qjdxMcfBVPtheatlantic.com/health/archive…

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 ...
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 ...
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/U0kqkV1urMtheatlantic.com/health/archive…
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 ...
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/iyrXiQiPsztheatlantic.com/health/archive…

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,...
“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 bec...
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/ theatlantic.com/health/archive…
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/ theatlantic.com/health/archive…
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/
PS: Just so everyone who sees this thread is aware of this standing offer:

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More from @edyong209

Ed Yong isn’t really here Profile picture
Jul 28
Some news: After 8 years & 750 stories, I've decided to leave The Atlantic. Today's my last day.
Being a writer means you can’t say things like "I can’t tell you what this means" cos, well, I can. That's kind of the point of me. So here’s an attempt at looking back & forward: 1/
I’m really proud of the work I did here. Hagfish. Lichens. Endlings. Source diversity. 60+ pandemic pieces. Long COVID especially. More important than the awards, I know this work helped people, and it changed my understanding of what journalism can do & whom it should serve. 2/
That work depended on a team. All my love to Sarah Laskow & Ross Andersen, dear friends & amazing editors; everyone on the sci/tech/health desk, still the best in the biz; and the indefatigable copy-edit, fact-check, art, audience & comms teams. 3/
Read 9 tweets
Ed Yong isn’t really here Profile picture
Apr 19
👋I’m back. And I wrote about the current wave of attempts to downplay long COVID—less outright denial & more "it’s real but no big deal".

Except: it very much is. It’s a substantial and ongoing crisis that still demands our attention. 1/
theatlantic.com/health/archive…
This piece addresses the gaping flaws in the most common downplaying arguments. It covers biomarkers, disability claims, the spectrum of severity, the oft-repeated “I don’t’ know anyone with long COVID” line, and more. 2/
theatlantic.com/health/archive…
A key point: The flaws in these arguments become clear if you actually talk to long-haulers (& clinicians with extensive experience in treating them). Their experiences are the ground truth against which all other data must be understood. 3/
theatlantic.com/health/archive…
Read 6 tweets
Ed Yong isn’t really here Profile picture
Sep 30, 2022
🧵Some personal news: I’m taking a 6-month sabbatical, starting now. These past 3 years have been the most professionally meaningful of my life, but they’ve also deeply broken me. The pandemic isn’t over, but after a long time spent staring into the sun, I need to blink. 1/
I’ve talked openly about the mental health challenges of pandemic reporting—e.g. & traumastewardship.com/2022/02/ed-yon… I know stepping away is a huge privilege most people don’t have. Persistence matters, but it has limits, and I’ve long since reached mine. 2/
When I’ve interviewed healthcare workers & others about burnout, there are basically 3 roads they take.
1) Double down on duty and mission.
2) Find community.
3) Step away.
I’ve done the first for as long as I can. I’m now doing the third to focus on the second. 3/
Read 12 tweets
Ed Yong isn’t really here Profile picture
Sep 29, 2022
🧵I want to share some thoughts about reporting on long COVID and other complex chronic illnesses. (e.g. below)
This is a thread about the ethos behind these pieces, and how I’ve approached interviewing, writing, and the rest of it. 1/
I still consider myself new to this kind of reporting & am learning as I go. This isn’t a finger-wagging lecture. I'm just sharing some stuff I've thought about a lot. I hope it will be helpful to other journalists who want to do this kind of work & inspire more to do so. 2/
And many (most?) of these ideas and principles also apply to other pieces I’ve written about people who’ve taken the brunt of the pandemic, including those grieving loved ones lost to COVID, immunocompromised folks, and burned-out healthcare workers. 3/
Read 32 tweets
Ed Yong isn’t really here Profile picture
Sep 26, 2022
🚨I wrote about ME/CFS (chronic fatigue syndrome). The US has millions of people with it & maybe two dozen docs who specialize in it.

This medical crisis needs urgent attention, esp. now COVID has hugely increased the number of long-haulers. 1/
theatlantic.com/health/archive…
ME/CFS involves a panoply of debilitating symptoms that affect almost every organ system. People are intensely sick for years or decades. They spend much of that time getting stigmatized, dismissed, misdiagnosed. 2/ theatlantic.com/health/archive…
At the highest estimates, Americans with ME/CFS outnumber the populations of 15 individual states. But there aren’t enough ME/CFS specialists to fill a Major League baseball roster. Most patients never get a diagnosis, let alone any kind of care. 3/ theatlantic.com/health/archive…
Read 14 tweets
Ed Yong isn’t really here Profile picture
Sep 12, 2022
🚨I wrote about “brain fog”—one of the most common & disabling symptoms of long COVID (and many other pre-pandemic conditions), and one of the most misunderstood.

Here’s what brain fog actually is, and what it’s like to live with it. 1/

theatlantic.com/health/archive…
First, what it’s not: Brain fog isn't anxiety, or depression. It’s not psychosomatic. It’s really nothing like a hangover, stress, or tiredness, and comments equating it to those things—“hey we all forget stuff”—trivialize what people are going through. 2/ theatlantic.com/health/archive…
Despite the name, brain fog isn’t a nebulous umbrella term. It’s a disorder of executive function—the mental skills that inc. focusing attention, holding info in mind, & blocking distractors. Without that foundation, one's cognitive edifice collapses. 3/ theatlantic.com/health/archive…
Read 21 tweets

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