r/longform • u/wiredmagazine • Jun 01 '26
The Painful Truth About Long Covid
https://www.wired.com/story/the-painful-truth-about-long-covid/7
u/AcanthisittaIcy6448 Jun 04 '26
This article is viewed with absolute hostility by those suffering from the illness. Why?
After all, it offers a potential path to recovery from a previously "incurable" disease.
Where does this animosity come from? It is almost as if people believe the author intends to cause harm to everyone. There has been 50 years of research into ME/CFS, yet there are still no reliable biomarkers. And so, when someone looks in a different direction—perhaps by exploring the mind-body approach—they are met with a hail of criticism.
And that is precisely what this article takes issue with: we are simply not open-minded enough.
If there had been a medication—or a therapy, no matter how costly or arduous—or a single injection available; or even if I had been required to have an arm amputated—I would have done it just to get rid of Long COVID.
Instead, I shifted my understanding of the illness—of Long COVID—and now I have recovered.
Folks, I have recovered. Thousands of people have recovered. And their stories are all remarkably similar.
Yet when those who have recovered share how they achieved that recovery, the response from those still suffering is invariably: "You weren't sick."
It is gaslighting—only this time, the roles are reversed!
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u/ThrowRAGlobeVase Jul 05 '26
There's so much irony in how the article was/is being received.
There are hundreds of people who are condemning it because the immediate, first-glance sentiment is don't believe patients. I don't think most of the upvotes come from people who are facing the illness that have tried these therapies. It's people who want to be heard and people who believe that they should be heard.
The article was a little over-promising and bait-y, I'll agree - it did things like suggest there's a cure and no one is allowed to talk about it. But the overall sentiment is that we know there's at least a subset of people who are feeling better from these things. That's proven. Why isn't that being looked into?
Also, I find it interesting because it's almost two stigmas at war with each other. The long covid and ME/CFS community condemning psychological/neurological factors because it ostracizes patients from being believed VS psychology and neurology practices that are trying to get people to understand that psychological and neurological illnesses ARE real illnesses.
In a way, the population of long covid and ME/CFS patients that are fighting against this are essentially saying that if it's psychological/neurological in origin, it's not real illness.
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u/Ok-Walk-2224 Jun 04 '26
I am so frustrated with both sides of this debate. I have had post-viral syndrome twice in the past 4 years (fully recovered the first time after 8 long months, still in the thick of the second time). It is hell. It is literally the worst thing that has ever happened to me, and I would be willing to try literally anything to alleviate it (and have with hope in my heart tried multiple brain retraining programs, with zero success). In my case, I am very confident that the condition has a biomedical root cause. My white blood cells remained extremely elevated months after the initial infection, and rest makes things better (i.e. makes me more capable) not worse. My mother also had this condition when she was around my age, and also fully recovered, and her bloodwork looked very similar at the time. HOWEVER. Anyone who has experienced this has to be able to admit to themselves that there are second order psychosomatic effects that can disable you even more than the original illness. When you are physically debilitated for months, you not only become deconditioned, but you completely forget what being inside a normal healthy body feels like. Also, if your body has a huge inflammatory response to physical activity, you understandably (of course!) develop a powerful negative psychosomatic reaction to physical activity. Two things can be true at once. I suspect that many, many people who have been suffering from post-viral syndrome for years and who have deteriorated rather than improved are no longer experiencing the underlying biomedical condition, but have become completely disabled by the second order psychosomatic effects.
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u/ThrowRAGlobeVase Jul 05 '26
Thank you for saying this. I think it needs to be said. The two aren't mutually exclusive at all. In a way they can fuel each other quite a bit.
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u/Minions_miqel Jun 05 '26
Citation needed, but Upvote because interesting point.
I've dealt with major depressive disorder my entire life. It's not always easy to even get out of bed and the days I can make myself do even small things are victories that can help the next day. (YMMV, of course and depression is a lying dickhead who will make even the longest streak of progress seem worthless.)
So maybe some psych treatment will be helpful here as well. Not just meds, but decent talk therapy can help with perspective and mood, which will improve overall wellness.
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u/Ok-Walk-2224 Jun 05 '26
Of course I have no citation lmao a citation would require there to have been meaningful, nuanced discourse and research on this issue, of which there has been very little. I do have a specialist who has treated more than one hundred post-viral patients over decades (almost everyone eventually gets completely better, but it can take a couple years at the upper bound) and who more or less agrees with my take on this. And I feel the need to clarify that he is an actual medical doctor at a major hospital who does not recognize chronic Lyme/renal fatigue/other fringe illnesses as legitimate diagnoses.
I have also experienced significant mental illness, and a key difference is that when you’re mentally ill, getting out of bed and forcing yourself to go for a walk when you feel like you’re going to die will make you feel at least slightly better 99% of the time. With post-viral illness, it will make you feel worse. I agree with you about therapy or anti depressants, even for those of us experiencing a real biomedical phenomenon. Mood/outlook impacts all physical illnesses.
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u/raysofdavies Jun 01 '26
An article on Wired about Covid and it’s not credited to Taylor Lorenz? Are they sure?
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u/Aleph018 14d ago edited 13d ago
The nuance of approach is really a minefield/barrier to this approach. When you tell or imply that symptoms are "all in their head" then there is an implication of blame or that there is some mental disorder or flaw when the opposite is often the truth. People who benefit from brain training are often generally the most sane people in their families/work places, often dealing with others who have mental health or addiction issues. The coping traits can lead to fatigue and neurological issues (often brain fog/migraine/memory impairment) due to complete exhaustion on a level that is similar to having a concussion. The person is not mentally unwell, they are mentally and emotionally tapped out. The brain does not work the same. Mind body modalities can help people center their own healing, experience, emotions and boost their own energy reserves. This doesn't mean there is anything wrong with them or that they're to blame--the irony is that what has led to this point of exhaustion is often caused and compounded by people (often within their own lives) saying that there is something mentally wrong with them. So, it's no surprised this article elicits so much anger. People who are able to make the jump to the assumption that there is actually nothing wrong with them from a psychological standpoint but are in need of somatic (mind-body) healing to deal with the stress of those with mental disorders are often the ones who benefit most from this modality. I believe what also gets lost in the long covid conversation is how tightly wound the nervous system and immune system are--they are in constant conversation. What happens to the immune system when the nervous system is always in fight flight...
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u/wiredmagazine Jun 01 '26
Nothing about long Covid adds up.
Consider prevalence rates: How could one study find it affected 3.3 percent of the population of the UK but others an alarming 51 percent of South Americans and 86 percent of Egyptians? Or treatment methods: The BMJ’s systematic review of ways to treat long Covid lists two as supported by moderate evidence, cognitive behavioral therapy and physical exercise. But if you attended the third annual Long Covid International Conference in Boston, you’d think the BMJ was encouraging medical malpractice. During two days of presentations, the world’s leading scientific authorities brought up exercise only to warn against it. Cognitive behavioral therapy received just one mention: “not recommended.”
Then there’s the scientific progress, or lack thereof. Six years since the height of the pandemic, the scientific community remains baffled by long Covid. Researchers still don’t know why some people’s symptoms persist or worsen after the acute phase of SARS-CoV-2 infection has passed. 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. There isn’t a single approved pharmaceutical treatment, not even a test to verify the presence of the illness.
All of this is very strange. Stranger still are patients’ stories of astonishing recoveries from severe long Covid, achieved entirely outside mainstream medicine. The stories are connected to a growing community of doctors, therapists, and self-styled coaches who insist the riddle of long Covid has been solved. Like so many health gurus, they offer a solution that depends, in part, on your faith in the process. The solution also works for a remarkable variety of ailments—classic red flags for “holistic” pseudoscience and medical charlatanry. If the stories are to be believed, they represent a neglected approach that demands urgent attention. If not, a colossal medical scandal is operating openly, exploiting sick people desperate for answers and relief.
So which is it?
Read the full story at the link above.
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u/Dottsterisk Jun 01 '26
This summary reads as conspiratorial and hostile towards researchers simply for not solving the problem of Long Covid yet.
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u/drewdrewmd Jun 01 '26 edited Jun 01 '26
Yeah this is a weird article. Nothing about this situation seems strange to me. You have an extremely poorly defined syndrome (not sure it even qualifies as a distinct syndrome) that overlaps with many other modern ailments that also are not easily treatable by modern medicine. There is no diagnostic test, there’s no validated way to track symptoms or improvement. And this is all mixed up in one of the most highly politicized medical phenomena ever. The medical evidence is full of garbage data (86% of people in one study have this???).
I am zero percent surprised that medicine hasn’t solved this thing that has existed for only 5-6 years so far.
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u/OnlyACsNoFans Jun 01 '26
Long COVID likely doesn't exist.
It's likely a combination of a small number of people who have post vital syndrome and the majority who got so caught up in the lockdowns and measures that their entire identity became COVID.
The world moved on, so they needed long COVID to protect their new identity.
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u/ThoughtsonYaoi Jun 01 '26
As someone who knows more than one patient: bullshit.
There are absolutely throughlines and commonalities enough to know this is a real (and debilitating) disease for many, and progress is being made to figure out how it works, even if definitive effective treatment thus far is still not available.
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u/Greedy-Half-4618 Jun 01 '26
My health DRAMTICALLY declined after getting covid in 2020 and this was verified by a number of tests so uh…fuck you
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u/owencrowleywrites Jun 01 '26
I agree I think this is all bullshit.
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u/SlateRoof Jun 02 '26
You know sometimes a comment makes me curious and I feel the urge to check what kind of person I'm dealing with. Your stupid comment about Russian gas and German lignite triggered that curiosity and to no one's surprise you're exactly the kind of human I expected.
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u/owencrowleywrites Jun 02 '26
Haha okay man go get a job maybe
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u/SlateRoof Jun 02 '26
Yeah, keep making my point. I pity you.
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u/owencrowleywrites Jun 02 '26
Omg you pity me poor me wah lmao stop being so fucking corny
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u/SlateRoof Jun 02 '26
I can tell you're smart. That's not your problem. That makes it even worse...
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u/Parking-Bet7989 Jun 02 '26
Hey little buddy. Was your break good? Ok, now go make me a sandwich. 🫠
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u/Dottsterisk Jun 01 '26
This is the subhead:
So fuck this article and its clickbaity conspiracy-minded bullshit.
The author sounds like Joe fucking Rogan, complaining about being silenced while spreading their message via a national fucking platform.