Ed Yong Articles on Long Covid & ME/CFS

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.

...pacing isn’t a recovery tactic; it’s mostly a way of not getting worse, which makes its value harder to appreciate.​

He gets it. :thumbup:

Very good article.
 
It does seem like he really gets it.



I have been thinking recently about how PEM is best thought about as a physiological 'state' that the body enters, and then (eventually) exists. And I was reading about physiological shock, and I thought about how PEM might be a less extreme/acute version that shares some similarities: "Physiological shock may be defined as acute progressive circulatory failure, in which the tissues receive an inadequate supply of blood and its components (such as nutrients and oxygen) and an inadequate removal of wastes."
 
Ed Yong nailed it again, writing almost an entire article about PEM. He acknowledges all the major difficulties of living with it: The inability to do things you want, the inability to do activities to manage your mental health, that doing one small thing means you can't do something else later, the false accusations it's psychosomatic, and the lack of support people receive.
 
InitialConditions said:
It does seem like he really gets it.



I have been thinking recently about how PEM is best thought about as a physiological 'state' that the body enters, and then (eventually) exists. And I was reading about physiological shock, and I thought about how PEM might be a less extreme/acute version that shares some similarities: "Physiological shock may be defined as acute progressive circulatory failure, in which the tissues receive an inadequate supply of blood and its components (such as nutrients and oxygen) and an inadequate removal of wastes."
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Text from Ed Yong tweets,
"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."

"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."
 
Good piece. You can see how he earned a Pulitzer. The Atlantic is a good vehicle to promote our truth, at least with a portion of the general population who will see it. Whether they will remember it I don't know.

I'm more concerned about the greater medical community, who if exposed to the article, may simply shrug it off as well-intentioned but full of conjecture and probably simply wrong. They've a history of doing that, so my fears have prelude.

My gratitude to the author, regardless.
 
I don't wanna diminish his writing or anything, but this is literally just what patients say. It's not hard to listen and repeat. It's just that nobody takes us seriously because of preconceived notions about our illness being fake or exaggerated.

EDIT: I didn't want to sound ungrateful; I suppose my point was that the value of what Ed Yong is doing is mostly in being willing to be on our side and listen without biases of pretending to know more than we do. Considering almost no other journalist has done that, it's certainly worthy of praise. It's just that on a technical level I don't think it's that hard to simply listen to ME patients and report the experiences in an unbiased way. It's just that nobody wants to do it because it's perceived as a controversial, political statement (which is of course absurd).
 
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Great quotes from Ed Yong and those he interviewed.

"PEM is the annihilation of possibility."
Brilliant, and you could the same about ME, especially severe ME.

Daria Oller, on being told she is depressed and unmotivated. She 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 just stop?”

"Pacing is more challenging than it sounds," says Yong, quoting Julia Moore Vogel, “It’s impossible not to overdo it, because life is life,”

Alexis Misko on the 'fight your illness' insults. “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.”

This paragra provides an interesting perspective on why fatigue is so readily dismissed as a symptom:
Historian Emily K. Abel in 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... told me.
 
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Simon M said:
"PEM is the annihilation of possibility."
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This is an important point. I wanted to write about it here for long but didn't because I lack the energy. Anyway, what we should have focused on with our advocacy is the fact that ME (when it's severe enough) completely takes away your possibility of self actualization. You are denied everything. It's like being in prison, but much worse.

Instead of this narrative, we decided to go with "I can't go for a walk". That's not really the problem now is it? People in wheelchairs cant go for walks either but they can have a fulfilling life. I can't. I wouldn't mind being a healthy person in prison either, because at least I could read and be productive to an extent. People convincted of white collar crime have joked about prison being like a second office. Friends would bring them books and all sorts of things. All you need to be free is pen, paper and some books (or a smartphone I guess). Unless you have severe ME. That's what real imprisonment is. But our advocacy organizations over the span of 30 years couldn't get this point across.
 
Hubris said:
This is an important point. I wanted to write about it here for long but didn't because I lack the energy. Anyway, what we should have focused on with our advocacy is the fact that ME (when it's severe enough) completely takes away your possibility of self actualization. You are denied everything. It's like being in prison, but much worse.

Instead of this narrative, we decided to go with "I can't go for a walk". That's not really the problem now is it? People in wheelchairs cant go for walks either but they can have a fulfilling life. I can't. I wouldn't mind being a healthy person in prison either, because at least I could read and be productive to an extent. People convincted of white collar crime have joked about prison being like a second office. Friends would bring them books and all sorts of things. All you need to be free is pen, paper and some books (or a smartphone I guess). Unless you have severe ME. That's what real imprisonment is. But our advocacy organizations over the span of 30 years couldn't get this point across.
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Thanks Hubris: your comment is brilliant. My daughter was a criminal lawyer, and indeed the criminal's life is better than a pt with severe ME: which destroys not only your life, but if you are sick long enough and severely enough, it can start to fracture your personality. Because identity and self are connected to interfacing with the world, and that is not possible with severe bed bound ME. Everything shrinks unbearably. No one should have to live like this, and many have for decades. It is criminal, and frankly shocking, that there is no urgency in our western world to help these young people. A friend's daughter has severe cancer, and with the drugs, she gets around, travels, and walks her dog. She is not a physician anymore, but her life is 'fuller' than that of a severe ME pt. The article had some superb sentences, observations, images, and Mr. Yong should be thanked. But fatigue was too prominent. ME is as I understand it a Systemic Exertion Intolerance Disease. Dr. Davis wanted to change the name until the core pathological issue was discovered, in order to reflect the reality of the problem. But the term never took.
 
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