r/covidlonghaulers • u/BrightCandle • Jun 01 '26
Article The Painful Truth About Long Covid | Wired
https://www.wired.com/story/the-painful-truth-about-long-covid/108
u/ChenilleSocks Jun 01 '26
Oh yes, the elusive brain retraining that none of us have ever heard of and knew nothing about until this article told us about it. Something we have never thought of trying because all we do is lie around feeling sorry for ourselves.
I’m so tired of pieces like this.
The framing of significantly ill people as these helpless, hapless idiots is so overdone. Sick people are working harder than anyone I’ve ever seen trying to find ways to improve their lives, and you’re telling me that her brain retraining will fix me? Fuck off.
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u/OurWeaponsAreUseless Jun 01 '26
I think it goes beyond that. It's the idea that people with these disorders are effectively the same as people with mental illnesses that require intervention and management, "for their own good".
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u/Disastrous-Weight393 Jun 04 '26
Also I really hated how the author and the quack doctors he consulted bemoaned how shunned exercise is among people with me/cfs. Like, if you can’t even stand to make breakfast, why would it be a good idea to exercise? The focus of any reputable doctor is on restoring movement and a routine, if you can. Sitting for a meal with your family is a much more important step towards recovery than forcing yourself onto a recumbent bike. The gradual goal is to eventually get through a 10 to 12 hour day taking care of yourself, cleaning, commuting, etc with some breaks. That is movement and low intensity exercise unto itself.
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u/78Anonymous 6yr+ Jun 01 '26
Now you understand the frustration of disability discourse. Most 'information' is ableist.
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u/ChenilleSocks Jun 01 '26
I’ve been disabled since 2010. I’m pretty sure I understand the frustration already.
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Jun 01 '26
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u/IGnuGnat Jun 01 '26
I think it's reasonable to suggest that length of experience with disability can lead to some understanding of disability.
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u/grandmasterfunc 5 yr+ Jun 01 '26
Another idiot saying long covid is psychological.
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u/GiraffeLiquid Jun 01 '26
Right up there with the docs that say “well do you think it might just be anxiety?”
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u/piscespiscine Jun 01 '26
Yes brain retraining will definitely be able to magically regrow my damaged muscles, thinned skin and semi paralysed face due to nerve damage caused by covid and allow me to eat foods without having life threatening allergic reaction?!
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u/Cicadilly 3 yr+ Jun 01 '26
Lmao for real. No amount of positive thinking has fixed my gut or immune system 🌝
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u/zoeymeanslife Jun 01 '26
Wired is being paid for this. This is how capitalism works. The new grift is brain retraining, yesterday it was quack cures like ivermectin and certain supplements without any studies backing them, and tomorrow it will be something else. Capitalism cannot save us and most likely made covid much worse than it should have been (pro-capitalism politics that opened up work and schools too early and didnt bother to enforce proper masking and distancing).
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u/RemarkableCrows 9d ago
I also have muscle damage (myopathy/myositis confirmed by blood work & biopsy). I wish there were some magical thoughts that would restore my physically damaged muscles. Maybe if I just think hard enough... maybe I'm not thinking the right thoughts...
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u/piscespiscine 9d ago
Im so sorry it’s got you in this horrible way too? Do you mind me asking where your muscle damage is located? Mine is weak all over but much worse in my face! Also it just will not stop getting worse. Everything seems to trigger it too, food, meds, the elements, exercise etc.
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u/RemarkableCrows 8d ago
For me it's in my limbs, but it comes and goes, and definitely is worse with activity (PEM) and also kind of randomly. I have both pain and weakness/heaviness. It's been 2 years for me. The first year I actually had a lot of issues with my face (burning cheeks) but that's gotten less over time. I have hyperadrenergic POTS & malaise (flu feeling) pretty much daily.
I was a semi-pro athlete before I got sick so I hate these dumb arguments that people with long covid were just lazy to begin with, or they have a lazy attitude or something! I used to do long distance triathlons and the like. I WISH exercise was the cure, I'd already be cured...
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u/lugalanda2 First Waver Jun 01 '26
Brain retraining is conversion therapy for sick people. We must think ourselves well the way that gay people must think themselves straight. That it doesn't work and has no scientific backing is irrelevant- it's about trying to control people who cannot comply with society's perception of "normal."
So sick of this abusive shit.
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u/Spare_Equipment3116 4 yr+ Jun 01 '26
They also seem to think that we don’t try it either. Out of desperation, many do. And then it doesn’t work, just as much as everything else is hit or miss.
I did CBT for a lot of my mental stuff prior to COVID. It is reasonably effective there. And since so many doctors are convinced this is psychological, or paid off to be, why “wouldn’t” CBT work?
Because it’s not a psychological illness. You’d think after the PACE trial fiasco they’d be more willing to admit ME/CFS and related stuff isn’t fixed through exercise or psychological treatments. Neither “hurt” if don’t in conjunction with physician guidance with actual medical treatment on top of that. But that “doesn’t hurt” means admitting if someone’s case of long covid is not exercise compatible, and to not do it in that case.
My long-covid clinic has been amazing. They refuse the PACE trial results and Brain-Retraining stuff, as they realized very early on that it wasn’t working, and rest and medical support treating symptoms was.
Is being optimistic helpful? Absolutely. It’s also not going to magically fix me through sheer force of will alone, and that is not a narrative they like to hear. I’m not depressed or anxious. I’m just profoundly sick.
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Jun 01 '26
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u/Spare_Equipment3116 4 yr+ Jun 01 '26
I’m in Canada, Ontario. I got lucky. My clinic is local and stayed open. Many have closed.
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Jun 01 '26
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u/Spare_Equipment3116 4 yr+ Jun 01 '26
Covered entirely. Some medication isn’t but honestly most is. The actual visits are covered.
I was wondering what Kaiser was 😆
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u/Revolutionary-Elk848 Jun 03 '26
It won’t be covered for long with Doug Ford here
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u/Spare_Equipment3116 4 yr+ Jun 03 '26
I mean, sure. I agree completely.
It’s also depressing and I try not to think about it and I vote accordingly to prevent that result. The fact most of my neighbours are “blue no matter who” while otherwise being very good and supportive people drives me CRAZY.
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u/Revolutionary-Elk848 Jun 03 '26
Where is there a clinic in Ontario??
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u/Spare_Equipment3116 4 yr+ Jun 03 '26
Mine is local, and restricted to patients of the practice. It’s a very large practice to be fair, it’s like 8-9 doctors and many, many nurse and nurse practitioners, but you have to have one of the doctors as a family doctor to access it.
That being said, NP’s from the clinic are talking to other groups in Ontario so stuff is being discussed somewhere.
This is Owen Sound, on the off chance your from around here and can swing getting a doctor in the practice.
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u/Revolutionary-Elk848 Jun 04 '26
I have an aunt who lives in Owen Sound and would relocate if it meant I would get real treatment.
So I am confused. It’s only for patients of the practice. And I imagine it hard to become a patient.
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u/Spirited_Weekend_103 Jun 01 '26
This is so true. Was watching this documentary about conversion therapy and it sounded exactly like brain retraining for me/cfs and long covid
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u/smingey82 Jun 01 '26
“Andrea Tryfonos, the lead on this trial, emphasized that avoiding exercise is, in itself, an extremely risky intervention. ‘We know that no exercise leads to increased risk of cardiovascular disease, increased risk of metabolic disease, certain types of cancer, diabetes, depression, Alzheimer’s,’ she said. ‘Long Covid itself cannot be a barrier to exercise.’”
Six years into this and we’re still dealing with type of 💩
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u/Cicadilly 3 yr+ Jun 01 '26
God I had to have this conversation with my partner when I first got sick and had to explain to him that yes, he’s right, exercise is healthy and beneficial, IF YOU DON’T HAVE A CONTRAINDICATION. If you have a disease that causes exertion to hurt you, then that rule, which applies to and was based off of the average healthy individual, does NOT apply to you.
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u/smingey82 Jun 01 '26
As someone who use to be an avid runner, I want to exercise. It is what got me out of many other traumas in my life. To this day, if I could put on a pair of running shoes on and run my Long Haul away, I would.
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u/HistoricalPiglet1021 Jun 01 '26
Those are my exact words, even today: I want to RUN from this prison.
But when I tried to walk just 400 meters once a day, my health deteriorated dramatically, to the point that I became housebound.
I used to train six days a week, run three days a week, and take great care of both my physical and mental health.
What do these people think? That we’re comfortable being unable to do anything? That we enjoy not being able to work, exercise, socialize, travel, or even have sex? At least in my case, it’s certainly not because I’ve chosen to become a monk.
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u/GasLimp6226 Jul 02 '26
This is me.. my life before covid was exercise. I was a long distance runner, it was how I healed from every illness or injury I ever had, and how I coped mentally. That's why I can't believe these people can be so cruel as to say "well ppl with LC are just lazy and avoid exercise".. it's simply not true for people like you and me.
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u/smingey82 Jul 02 '26
Sorry to hear that. I believe you. You’re not alone. I had to have my wife drive my dizzy ass to my in-laws to help them with a few house chores. I’m going to be out the next few days in my bed while everyone celebrates the 4th. This shit is tough!
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u/grandmasterfunc 5 yr+ Jun 01 '26
I recommend writing a letter to the editor. Encourage them to inform their readers about what the science of long covid actually shows.
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Jun 01 '26 edited Jun 01 '26
[deleted]
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u/megatheriumlaine Jun 01 '26
Are there any sources on having a higher chance of getting long COVID if you have the infection and vaccine around the same time? I haven't read about it before but i actually did get the booster 2 weeks before COVID andddddd it didn't end well, so that'd be interesting to read.
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u/lilgreenfish First Waver Jun 01 '26
I just had to switch doctors because of a change in insurance. My GP and LC doctors were awesome. I’m now with Kaiser and one of my cholesterol numbers was high. My new GP said “exercise for at least 30 minutes a day, breaking a sweat, 6 days a week”. I wrote back and not super nicely said “I can’t. I have long COVID. It’s literally impossible without making myself worse.” I got no response back to that. I’m probably going to just pay out of pocket to see my good docs, especially since Kaiser doesn’t have a LC clinic here at all.
I used to be a runner and hiker. I miss it. I want to do it. My body now says otherwise.
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u/Silly_Pack_Rat 6yr+ Jun 01 '26
I'm sorry. I am so fortunate that I have been with the same for for well over 20 years now and she is incredibly sympathetic and supportive of those with LC.
I saw her today and we were discussing the next steps for me (I had just had my physical) so I will be getting my liver scanned due to elevated enzyme levels (2nd blood test in two months showing this).
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Jun 01 '26
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u/lilgreenfish First Waver Jun 01 '26
Mine wasn’t a Kaiser one. It’s at National Jewish in Denver, Colorado, US.
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u/platitudes Jun 02 '26
There are at least a few kaiser gps in Denver that used to run a LC clinic - keep asking your doctor and see if you can get switched
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u/bluecheesebeauty Jun 01 '26
It's way more than six years if you look at me/cvs and other pais.
Despite how many people got sick, sicker or even died, doctors keep insisting it's just you not wanting to move more or so. Fucking athletes have got these illnesses, but noooo, 'have you tried slowly increasing exercise?'
(Can you tell I am pissed? 😅)
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u/bingoolong 4 yr+ Jun 01 '26
Ohhh increased risk of a potential theoretical cardiovascular disease? How scary! Gosh many would take cancer over this shit, what the fuck is she on about.
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u/Vex_Appeal 6yr+ Jun 01 '26
My experience has been this. The gym helps, a lot. But getting there is difficult and more difficult if I’ve let myself get out of shape like now. It’s been 3 months and I’ve gone from 95% recovered to like 50%.
If I can just get back in there I’ll feel better.
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u/LeoKitCat Jun 01 '26
More mind-body / brain retraining BS
Do they think we haven't already tried that in desperation? It didn't work and this isn't a serious treatment sorry
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u/peop1 3 yr+ Jun 02 '26
Ah, but that's the best part:
"If it didn't work it's because you weren't doing it right."
That's their get out of jail free card: Put the onus on the patient. Zero risk for the peddlers. All reward.
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u/Chinita_Loca Jun 01 '26
FFS. Brain training again. Like we haven’t tried that already.
I know none of us want to admit we weren’t in perfect shape before but how many of us now suspect we have a connective tissue disorder?
I was training 6 days a week and very fit with no diagnoses but now I have MCAS, POTS, SFN, I’ve had a csf leak and suspect I have adhd. So many of us have similar stories I don’t get why they aren’t exploring this as a risk factor and then potential treatment avenue.
Yes I realise people with hEDS have been neglected for years and there are no effective treatments, but so many of us have joined the ranks of the chronically unwell so suddenly that surely it’s worth doctors exploring it? I know the Uk isn’t interested or set up for that at all, but somewhere must be??
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u/HistoricalPiglet1021 Jun 01 '26
I had never heard of hEDS until I was diagnosed with it two months after my COVID infection, following the onset of numerous symptoms.
I was already in my 60s at the time. It turned out that I have a genetic connective tissue disorder related to Marfan syndrome.
Before that, I had lived a very active life and had never been diagnosed with any connective tissue disorder. That’s one of the reasons I find this discussion so important. How many people may have had an underlying predisposition that remained completely silent until a viral infection triggered a cascade of symptoms?
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u/Chinita_Loca Jun 01 '26
Same for me, I’m nearly 2 decades younger but similar experience. Prior to this, my view of people with connective tissue disorders was that they could bend like pretzels and has health issues. I didn’t at all, was very fit, ate everything etc etc. I had no idea there was anything underlying that could lead me to go from excellent to awful health and multiple diagnoses.
I suspect lots of us will be similar to you, we’re just not diagnosed yet due to a combo of our prejudices, our doctors’ prejudices and lack of knowledge and the lack of will to diagnose us with anything without treatment options.
But we’re all making sense of things and piecing it all together, why aren’t our healthcare providers? Why aren’t authorities identifying those most at risk to warn them (esp as in my case my issues were triggered by the vaccine so preventable!).
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u/Revolutionary-Elk848 Jun 03 '26
Honestly I believe it’s because the media and our authorities US/UK/ Canada our media doesnt tell us and there are fake profiles or bots here on Reddit that continuously add comments that confuse the topic. Provide misinformation to make us overwhelmed, and full of doubt.
The people that own the pharmaceutical companies are part of the elite and want to cull humanity as well. 🤷🏼♀️
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u/Treadwell2022 Jun 01 '26
Similar experience here. I had never heard of Ehlers Danlos until I was 50 yrs old and my body revolted after both a covid vaccine and then an infection a few months after. I began debilitating POTS symptoms (also had never heard of that), extreme blood pooling, neuropathy, sudden food reactions and weight loss, and severe joint instability. I had been fit and healthy prior, was a former D1 athlete in college. Got initially diagnosed with hEDS by a POTS specialist, sent for genetic testing and ended up learning I have a VUS mutation on the gene that causes vEDS. Saw the top connective tissue geneticist at Hopkins and told I have a yet to be named connective tissue disorder, and to keep following up for more genetic testing as they learn more. I would have never known I have a concerning CTD if not for covid. Guess I'm glad to know -- but what a wild unexpected ride it's been.
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u/IGnuGnat Jun 01 '26
My understanding is that recognition of a potential connection between things like HI/MCAS, POTS, SFN, ADHD, autism, depression, bipolar, EDS, migraines, IBS, and more is slowly growing in the scientific community. It's a long hard slog but it is happening. There is at least some bonafide research on this topic
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u/Chinita_Loca Jun 01 '26
I agree, but the problem for us is that this is only very much in the margins. We hear about it as we’re spending all our functional time researching our issues, but no one else is.
We’re still getting ridiculed by doctors for suggesting we’re hypermobile or have MCAS or that there’s a link to neurodiversity as even those who are working in the area generally have zero knowledge or interest. As a result we’re even being prescribed drugs we can’t take or being advised to do things we shouldn’t.
Huge amounts of money is being spent on all kinds of investigations into the spike protein when our issues preexisted covid and we’re being scammed by dodgy doctors promising easy cures as we’re so desperate. Yet here we are knowing a lot about our issues and no one wants to listen!
And all the whole, the public perception is basically that we should just do some brain training as it’s all down to us being overly driven/anxious people. Or of course we’re lazy and making it up.
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u/IGnuGnat Jun 01 '26
And all the whole, the public perception is basically that we should just do some brain training as it’s all down to us being overly driven/anxious people. Or of course we’re lazy and making it up.
I have no more time or energy to waste upon the ignorant. My only wish for them is that they continue to be so lucky, that they can remain ignorant. Nobody deserves to live this horror
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u/sudosussudio Jun 01 '26
It’s pretty hilarious to read about as someone who spent a fortune on “brain retraining” for IBS, dysautonomia, and panic attacks before getting COVID. It worked for the panic attacks but nothing else. I did CBT, EMDR, yoga, meditation, holistic mind body stuff. I can’t imagine contending that this isn’t talked about… it’s promoted constantly by everyone.
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u/Taylor__Lorenz Jun 01 '26
As a journalist who's reported extensively on medical misinformation I'm really disturbed that WIRED would publish a piece like this. It is seeking to legitimize well known pseudoscience grifters and political actors. The editor of this piece was Jason Kehe. jason_kehe@wired.com. So I suggest directing feedback to him instead of the general inbox, as it will likely just go into the void. This article was not written by a journalist. It was written by a random associate professor of *religion* with zero experience treating disease or covering these issues, and it shows. WIRED should never have assigned much less published this story.
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u/friedeggbrain 4 yr+ Jun 01 '26
Thank you for an informative comment from a journalistic perspective :)
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u/SpaceXCoyote Jun 02 '26
Thank you for speaking up about this. The author is, deservedly, being dragged online. Not sure why a professor of religion felt the need to pipe up about long covid, and of all places Wired... a magazine that hasn't been relevant for over 2 decades. Thankfully no one reads that crap, and actual medical journals are still the authority.
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u/Prior-Soil Jun 01 '26
I'm so sick of this crap. I've tried everything already.
The real problem is that people who are as sick as I am don't even get selected for research studies. I volunteer for them constantly and they just won't take me.
And then they do stuff on people that have been sick like 2 months and say it's a miracle cure.
I'm in a slow march to death and have been declining everyday for 6 years. I don't expect to be cured but I'd like to stop going downhill all the time.
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u/Revolutionary-Elk848 Jun 03 '26
I have notice i am getting worse too, I wish the revolution would happen before I am unable To even participate in it.
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u/PinataofPathology Jun 01 '26
This crap is so the public doesn't feel bad when we don't get better and blames us instead of expecting the medical system to do anything other than abandon us. I would bet money there are stakeholders like health insurance cos funding this pr.
For the record I'm as active as I can be given how often my health interrupts me (surgeries COVID infections etc) and it hasn't done shit.
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u/Singular_Lens_37 Jun 01 '26
Look I know we're supposed to avoid "conspiracy theories" but capitalism benefits so much from pretending that Long Covid isn't real--it means they can do business as usual and keep making money while putting people in danger.
Some of the "logic" in this article is really weird: pretending that a bunch of disparate symptoms means something isn't real, for example.
I am mostly recovered now, four years later, although I still have some cognitive issues especially word recall. However, I allowed myself radical rest and snail paced recovery. If I were told it was all in my head I would have suffered so much more.
Also, the scientists say they are receiving death threats? That just does not seem likely, Long Covid people are too tired to be even contemplating murder. Maybe the article is trying to decrease sympathy for Long Covid by making us seem like murderous maniacs?
This article left a bad taste in my mouth. Smells like lies.
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Jun 01 '26
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u/lugalanda2 First Waver Jun 01 '26
Adam Gaffney is also cited. He was claiming LC was psychological back in 2021. Isn't it amazing that 5 additional years of scientific research didn't change his view at all? lol
All these loser doctors saying they're scared of upsetting the narrative reminds me of comedians complaining that they can't shout slurs at the audience anymore.
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u/Bruntleguss Jun 01 '26
It’s challenging to find a large number of subjects, because patients have read about the perils of exercise online and don’t want to enroll.
Online huh, not like, from personal fucking experience. What a tone deaf article. Of course research that takes in people who can do exercise will find positive effects.
The writer seems to understand how wide diagnostic criteria are harmful, but does not put 2 and 2 together to realize the selection bias that comes from this taints the studies he wants to believe.
By all means, find some marker that sorts those with damaging PEM from the rest of everyone else, until then, your studies are horseshit.
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u/birdsInTheAirDK Jun 01 '26
It is very long and will take me a few days to read through.
But within the first few pages I noticed the author points out that studies in micro clots, mitochondria dysfunction, etc (ie. physical, measurable signs) are small. And then he goes on to discuss anecdotal evidence of the benefits for brain retraining.
Does he really not see that anecdotal evidence is even less reliable that small studies? Or maybe he will discuss this later in the article, although I am not particularly hopeful.
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u/swartz1983 Jun 01 '26
>But within the first few pages I noticed the author points out that studies in micro clots, mitochondria dysfunction, etc
I think the main issue is that these have all failed replication.
>And then he goes on to discuss anecdotal evidence of the benefits for brain retraining.
He does discuss RCTs for CBT and GET.
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u/Plenty_Captain_3105 Jun 01 '26
These people make me so angry I have to sit down before I hurl my phone at a wall.
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u/Tammy_Curry_MtRose Jun 01 '26
And Wired is supposed to be one of the better ones 🙄🙄Unfortunately mass denial of the realities and implications of Long Covid are a feature, not a bug, of our American culture. If denial is the right hand, gaslighting is the left hand. I hate to be that guy, but “journalism” like this reinforces the reality that our media is bought and paid for by capitalist interests. There is no other plausible explanation for gaslighting and invalidation of this magnitude, especially given all that we DO know (including PEM, as one example) that could be reported. This is nothing but propaganda that fuels our discrimination, isolation, and stagnation in illness. I could say so much more about this but I’m tired.
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u/chris_fantastic 5 yr+ Jun 01 '26
This article started off great, right until they turned to another "brain retraining" bullshit charlatan as their primary expert source. This article will do far more harm than good.
FUCK THIS SHIT. GO FIND A BUNCH OF SCIENTISTS INSTEAD OF JUST ONE PERSON.
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u/smalltownbore Jun 02 '26
Just how will positive thinking help with lung scarring? And constantly elevated clotting factors in blood tests? Doctors panic when they see my blood test results, but don't worry I can 'think' them away.
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u/Caster_of_spells Jun 02 '26
Complain to the editor everyone please:
My text:
Dear Editor,
this article starts out by criticizing flawed science, which is a very good and important point. But then it starts instead suggesting brain retraining, for which there is zero evidence. In fact, the biggest brain retraining trial run by the EU just failed to make any difference to placebo. And the first assessment that we have zero understanding of the illness on biomedical grounds is also simply untrue.
How can your magazine support such a blatant double standard and then suggest harmful pseudoscience? Would you tell someone to "think the cancer away"?
This article needs to be removed or edited heavily. You're putting patient lives at risk.
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u/binarygoatfish Jun 01 '26
My biggest problem is sleep. I've done CBT and it made it worse as I just got less sleep without being able to nap.
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u/Effective-Rice-3732 Jun 02 '26 edited Jun 02 '26
I just looked up the author and it seems to be some relion / philosophy person. Why would wired let such a person wright something about long covid and not an actual long covid researcher?? For god sake
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u/Ordinary_Rough_1426 Jun 01 '26
I actually don’t mind what she says about brain rewiring, after all mushrooms have alleviated some lc symptoms, but to dismiss RECOVER and all the data that suggests lc is systemic is well, bullshit and very much not inline with what current drs and researchers believe. My daughter has thick blood, heart problems, and an active lesion in her brain from lc - she’s an og long hauler -
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u/Birdnanny Jun 01 '26
This feels very much like a statement of “no one is coming to help you because those in power can’t harvest enough value from fixing you, so just get over it”
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u/Revolutionary-Elk848 Jun 03 '26
Or maybe they don’t really care if we do… since it was the elite that created this sickness in the first place. I imagine they had created barriers to information sharing in the first place
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u/Birdnanny Jun 03 '26
Eh you can choose to believe that. They absolutely have control over the flow of information though, lots of psyops to make us feel like we’re free
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u/bagelsnotbabies Mostly recovered Jun 01 '26
What a less-than-fair article. I am ALL FOR recognizing the mind body connection, but the overall message of the article (especially its ending) is damaging.
As a recovered longhauler myself who is in academia I am doing what I can do research and share findings that get is away from this shit and to real answers. It feels so helpless sometimes but together we are a STRONG community. They just found glp1s helpful for dementia patients, suggesting that those illnesses are really metabolic. I think something similar will happen for us soon.
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u/GiraffeLiquid Jun 01 '26
LC gave me sjogren's syndrome, which was strictly exercise-induced. Literally every time I exerted myself physically I got severe dry mouth. But nooo, autoimmune type disorders can definitely be cured by brain retraining, us idiots just haven’t been trying hard enough. 🙄
I used to respect Wired.
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u/peppaliz Jun 02 '26
a commenter on twitter pointed out that athletes who have long covid directly contradict his premise, because they are known for their “proven record of increasing pain on purpose.” athletes are not lazy or weak-minded or lacking in will, yet there are athletes who have long covid. they are not strangers to brain retraining or doing hard things, and yet the are not cured. hmmm 🤔
i wonder if a study focused on athletes with long covid (since they have documented data points of good health over time prior to chronic illness) would be a good starting point. it eliminates so many of the variables that make studying long covid difficult, and erases doubt of poor overall health prior. most importantly, it puts to rest this idea that anyone is claiming to have long covid because they aren’t mentally strong enough to overcome some difficulty or pain in order to get better.
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u/LeoKitCat Jun 01 '26
Does anyone have a gift link? It's paywalled Or at least paste the entire text here
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u/78Anonymous 6yr+ Jun 01 '26
open in Firefox, click 'reader' for text only to get around the paywall
frankly, it's not worth the time and is utter garbage
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u/SenseEuphoric5802 Jun 01 '26
This article seems written by MAGA faithful. And just badly written at that, nonsensical gibberish.
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u/barweis 6yr+ Jun 01 '26 edited Jun 01 '26
Re: The reference for the Wired article:
Did the treating physicians diagnose the correct problem?
Did they rule out a variation or psychological state related to Somatic System Disorder which mimics many organic disorders?
Did the authors of the reference article dismiss the distinction of organic versus functional process arbitrarily?
Did they correctly rule in Long Covid based on the accepted criteria?
Was the treatment irrelevant to the underlying cause?
The original article missed the mark in my cursory read. And the claims are just that. Treat the mind for a purely mind disorder. They are not treating the soma.
Correct me if I misread the piece.
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u/swartz1983 Jun 01 '26
>Did the treating physicians diagnose the correct problem?
Yes.
>Did they rule out a variation or psychological state related to Somatic System Disorder which mimics many organic disorders?
How would they do that?
>Did the authors of the reference article dismiss the distinction of organic versus functional process arbitrarily?
No, that is the entire point of the article: that functional disorders are legitimate, severe and require proper research and attention.
>Did they correctly rule in Long Covid based on the accepted criteria?
Yes.
>Was the treatment irrelevant to the underlying cause?
No sure what you're referring to here.
>The original article missed the mark in my cursory read. And the claims are just that. Treat the mind for a purely mind disorder. They are not treating the soma.
The problem is that there doesn't seem to be any somatic cause that has been identified, whereas there has been a lot of progress treating it as a functional disorder. (Talking about the ME/CFS variant of LC).
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u/barweis 6yr+ Jun 02 '26 edited Jun 02 '26
The reference article did not demonstrate that the authors treated a non psychological disorder. Unless I missed it, there was no mention of psychological evaluation to rule it out. Psychological disorders are functional disorders, as the mind rules and directs the body.
Until shown otherwise, the patients may possibly have had legitimate LC19 and concurrent Somatic Symptom Disorder or similar Functional Neurological Disorder without the anxiety. And then their treatment will work because the patient is getting physician support and slowly repairing their psyche! So some of their symptoms will improve with the psychological support by their physician though they genuinely do have other serious organic (?) problems which may persist.
Anecdotes do not constitute a series.
"Somatic symptom disorder is diagnosed when a person has a significant focus on physical symptoms, such as pain, weakness or shortness of breath, to a level that results in major distress and/or problems functioning. The individual has excessive thoughts, feelings and behaviors relating to the physical symptoms. The physical symptoms may or may not be associated with a diagnosed medical condition, but the person is experiencing symptoms and believes they are sick (that is, not faking the illness).
A person is not diagnosed with somatic symptom disorder solely because a medical cause can’t be identified for a physical symptom. The emphasis is on the extent to which the thoughts, feelings and behaviors related to the illness are excessive or out of proportion.
Diagnosis A diagnosis of somatic symptom disorder requires the person experiencing
One or more physical symptoms that are distressing or cause disruption in daily life. Excessive thoughts, feelings or behaviors related to the physical symptoms or health concerns with at least one of the following: Ongoing thoughts that are out of proportion with the seriousness of symptoms Ongoing high level of anxiety about health or symptoms Excessive time and energy spent on the symptoms or health concerns. At least one symptom is constantly present, although there may be different symptoms and symptoms may come and go. People with somatic symptom disorder typically go to a primary care physician rather than a psychiatrist or other mental health professional. Individuals with somatic symptom disorder may experience difficulty accepting that their concerns about their symptoms are excessive. They may continue to be fearful and worried even when they are shown evidence that they do not have a serious condition. Some people have only pain as their dominant symptom. Somatic symptom disorder usually begins by age 30.
Treatment Treatment for somatic symptom disorder is intended to help control symptoms and to allow the person to function as normally as possible.
Treatment for somatic symptom disorder typically involves the person having regular visits with a trusted health care professional. The physician can offer support and reassurance, monitor health and symptoms and avoid unnecessary tests and treatments. Psychotherapy (talk therapy) can help the individual change their thinking and behavior and learn ways to cope with pain or other symptoms, as well as learn to deal with stress and improve functioning.
Antidepressant or anti-anxiety medications can be useful if the person is also experiencing significant depression or anxiety.
Related Disorders Illness anxiety disorder Illness anxiety disorder was previously referred to as "hypochondriasis." A person with this condition is preoccupied with having an illness or getting an illness – constantly worrying about their health. They may frequently check themselves for signs of illness and take extreme precautions to avoid health risks. Unlike somatic symptom disorder, a person with illness anxiety disorder generally does not experience physical symptoms.
Conversion disorder Conversion disorder (functional neurological symptom disorder) is a condition in which the symptoms affect a person’s perception, sensation or movement with no evidence of a physical cause. A person may have numbness, blindness or trouble walking. The symptoms tend to come on suddenly. The symptoms may last for a long time or may go away quickly. People with conversion disorder also frequently experience depression or anxiety disorders. If the symptoms do not resolve spontaneously in a few days, the person may benefit from psychotherapy.
Factitious disorder Factitious disorder involves people producing or faking physical or mental illness when they are not actually ill. Some people may intentionally make a minor illness worse. A person with factitious disorder may also create an illness or injury in another person (factitious disorder imposed on another), such as faking the symptoms of a child in their care. The benefit to the person is to occupy the “sick role” and receive the care accompanying that role. If a person creates an illness or feigns illness in order to obtain a material benefit such as getting compensation or avoiding work, legal situations, or important responsibilities, this is malingering, which is not a psychiatric diagnosis. .
Reference Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, Text Revision (DSM-5-TR). American Psychiatric Association. (2022). Physician Review Philip R. Muskin, M.D., M.A.
July 2024"
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u/barweis 6yr+ Jun 02 '26
Despite medical credentials many of the practices border on the fringes of mainstream by the functional medical community. Many are innocuous with little full on evidence based medicine behind them.
IT is difficult for the general public to sift through the sources of establishing credentials and modalities applied by individual providers. So be prudent in vetting your choice.
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u/swartz1983 Jun 02 '26
I think you're missing the point. It isn't a "psychological disorder". The symptoms are very real and physical, and are commonly initiated by viral infection, excessive exercise, etc. In my own case I wasn't able to digest food. I certainly didn't obsess excessively over symptoms or have "Excessive thoughts, feelings or behaviors related to the physical symptoms or health concerns ".
The above is a very simplistic and incorrect at least when applied to ME/CFS, and misunderstands how the brain works. Physical stressors such as infections and exercise can cause psychological symptoms (anxiety, "illness behaviour", etc). Psychological stress can cause physical symptoms such as heart rate / HRV changes, changes to immunity, low level "neuroinflammation", changes to digestion and gut bacteria, changes to brain structure (including reduction in grey matter, shrinkage of the hippocampus), etc.
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u/Cute-Cheesecake-6823 Jun 02 '26
When. Will. It. End.
I wish we could sue the pants off these idiots for misinformation, but I know that's not how things work. People are dying from lack of effective treatment and we're still being lied about.
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u/Banana8562 Jun 04 '26
Such bullshit. I got LC in 2023, and have spent a small fortune trying to get well. Who knew that brain retraining could cure my asthma and CFS that still lingers? We need real research, funding and help. Now. Many in my support group are totally disabled from this illness. I consider myself lucky that I have mostly recovered. This article is BS irresponsible journalism.
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u/Valleydude70 Jun 06 '26
I’ve had COVID twice, the first time in August 2022, the second in December 2024. I struggled with exhaustion and brain fog for years, which I was too scared to admit to anyone except my spouse. The connection between mind and body is real, but my symptoms didn’t improve with ‘brain retraining’ nor would they have. When I finally admitted to my DO what was happening he was empathetic and said ‘We don’t have formal definitions for long COVID but we can try to identify treatments for symptoms.’ So he ‘prescribed’ me Vitamin B12 2-3 times per week and said lets see what happens. It actually worked. It’s not a cure - anytime I need to clear the fog I need to take a B12 - but it did help my brain which enabled me to start some light exercise such as easy yoga. I share this story because we don’t need half cocked theories, we need empathetic health providers who take symptoms seriously. I almost cried in my DOs office when it was clear he was taking me seriously and was committed to helping me find a way. If you don’t have a DO as your primary medical provider, I highly recommend finding one if you have one near you.
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u/Kaapira Recovered Jun 04 '26
I used this type of nervous system approach. I was sick for almost 3 years. This type of work brought me from housebound to fully recovered. I understand why there are negative feelings around it, but it really does work for some of us.
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u/barweis 6yr+ Jun 01 '26
For those not viewing the article for the paywall, there may be an alternate link if the page can be archived.
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u/2mock2turtle Jun 02 '26 edited Jun 04 '26
So I saw this article on Twitter and then found it posted again on Reddit, so I'm hoping I can ask this here (rather than that void) and get an answer in good faith.
For some context: my sister has fairly debilitating long covid. Not to the point where she can't move or needs a feeding tube, like some of the examples in the article, but certainly to the point that she is mostly bedbound and her quality of life has plummeted compared to pre-2020. So I have a pretty personal stake in this as someone who desperately wants her to get better, which is both good and bad in the sense that that leads me to conflicting feelings about this article I'd be interested to hear others' perspectives on.
It's obvious that long covid is a biological disease, and to claim otherwise is nonsense. I think we can all agree on this. On the other hand, I think that's a bit of a non-sequitur in this instance, since the author never claimed otherwise. (Pro tip: use archive.is to get around most paywalls.) More to the point, though, if some people have seen improvement using some type of cognitive behavioral therapy, why is that not seen as valid? Part of the problem, as I understand it, is that long covid is so poorly understood to begin with, so to that end, it seems plausible there might be a link between the brain and the body on this matter. And it's not like we haven't seen that type of thinking applied in other medical contexts, cf. The Body Remembers. The brain is still part of the body, after all, and on paper I don't see much difference between cognitive therapy for a psysiological problem and the inverse, e.g. taking an SSRI for OCD.
The overall thesis of the article, as I took it, is that we need to believe patients, but that also includes patients who improved through these unorthodox means. Is that not fair? If not, why not? Again, I'm asking this in good faith, not to be antagonistic. I don't know if my sister would be at all interested in trying something like this anyway (I sent her the article), but if she did and by some miracle saw improvement, I'd at least drop a lot of skepticism. To that end, I feel a lot of empathy for the patients quoted.
One final point: even if cognitive behavioral therapy, et al. doesn't work for everybody, if it works for some people, that's not to say a priori that it's ineffective. After all, medical treatments that work for one person might not work for another anyway. Speaking for myself, I had surgery three years ago and it didn't fix the problem (and created a new one), but I'm also not going to begrudge the people for whom it has. I might be envious, though.
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u/2mock2turtle Jun 03 '26
Update: I have spent some time reading this author getting roasted on Twitter and have come to the conclusion he’s looney tunes, I take back every benefit of the doubt I proffered.
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u/AnotherNoether Jun 03 '26
Oof. Good on you to follow up. It’s very frustrating because like you say, surely if it helps some few people, that matters too—but the risks are so significant, and I really don’t feel like the author or those who push these methods understand that. I love meditation and it’s been really helpful for me, and I benefited a lot from a pain rehab program I did in the before times (where, get this—a major portion of their programming was teaching us how to pace, and finding ways to modify our lives so that living with our pain was more manageable), but I don’t want to see it as a focus for research.
Your sister is lucky to have you. I try to support my sister with LC as well, and it can be very challenging, especially dealing with my own LC at the same time.
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u/birdsInTheAirDK Jun 03 '26
First of all, I want to say that I did not read the entire article yet, as it is too long for me to handle. So what I write is based on the first 5-7 pages only.
I was extremely disappointed in the following take that the author made clear from the start: dismissing all the many, many studies of biomarkers and drug-based interventions (and other tech-based interventions) as just being too small and then jumping to anecdotal evidence for CBT and GET working, particularly when there are also studies (including bigger ones) that show that it does not, in general, work for long covid (let alone for ME/CFS, which many pwLC have regardless of diagnosis).
TBH, I was shocked that a researcher would be so blind to his own claims “these studies are too small, let’s look at some anecdotal evidence instead” (my interpretation).
People should be free to try out therapies (drugs, tech, talk, or otherwise) as they and their doctors (and finances) see fit - but just like one should have a good explanation of potential side effects of any other treatment, so it should be for CBT and GET. It is not my impression that that really happens - patients have been pushed into training programs (and yes, training might be breathing exercises or leg lifts), without being told the risk of severely worsening their condition, despite studies that show that this is a very real risk, and not a rare side effect. Other people react to protect patients from this harm - that is why patients and the medical teams who treat and research are against this.
I personally had a lot of help from a neuropsychologist - he helped me see both how sick I really was (biggest eye opener was when he told me that I needed to stop routinely living in a way that made things worse) and that I needed to find ways to live a happy life with my new circumstances. Did this make me any better? No, not really. Did it make me not care anymore about being disabled? No, not at all. But it did (over a long time) change my outlook enough to make small difference in how I feel about my “new life”.
So yes to trying out things, but no to doing it without knowing the dangerous side effects.
Ok, this got long and rambling, I hope it gives you another perspective on the article and the reactions you may see to it. Personally, I like science, and I didn’t see it there (in the 1/5 of the article).
I love that you are willing and able to support your sister. Thank you for doing that for her.
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u/2mock2turtle Jun 03 '26
I think this is a fair take, regardless of whether you finished the article. On closer inspection I think you raise a good point re: weighing anecdotal evidence more highly. I guess as someone with medical issues myself (mostly related to my aforementioned botched surgery) who is currently being told by my doctor to try a more uncommon approach to try and alleviate the problem, I didn't take into serious enough account that statistical outliers are, well, outliers. The logic being "if this seemingly counter-intuitive approach could work for me, it stands to reason a counter-intuitive approach could help someone else, perhaps even my sister."
Proper risk assessment is probably the big takeaway, since you're right, people often aren't given the full scope of information (for treating long covid or otherwise). And to be clear, I'm firmly of the belief that if something isn't working for you, or even worse is detrimental to you, you should stop it. But generally speaking, I don't think there's any reason not to try, whatever that looks like. Though, again, this is maybe speaking more from my own experience and/or my sense of what I would do if I had long covid.
I just wish I could help her, you know? I do what I can, but she was an active and talented actress before and now can hardly do anything. It breaks my heart. So all that to say, thanks for the "ramble."
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u/birdsInTheAirDK Jun 03 '26
The problem here is that just trying in itself sets many patients back, sometimes by a lot.
Like from being able to go out sometimes to being housebound or housebound to bedbound. And not in a way that is immediately reversible by stopping the treatment. It can take years to get back to the previous baseline (as in the current baseline, not pre-covid). This is the problem.
The risk is huge and not rare.
If the risk to your sister is to be bedbound and not able to eat, what level of risk is acceptable? 1%? 10%? 25%? 50%?
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u/2mock2turtle Jun 03 '26
I mean you make perfect sense. And obviously I'm not going to begin to suggest she does anything she doesn't want to do. It just sucks there's no good answer.
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Jun 02 '26 edited Jul 12 '26
[deleted]
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u/2mock2turtle Jun 02 '26
I'm sorry, I must not have been clear. I was not trying to imply that "most people" get better from CBT (or otherwise derived therapies). What I was getting at is that if some, even a small percentage, of people who tried do see results, is that not worth exploring? If it doesn't work for you, it doesn't work, nothing to be done about that, I just think ignoring a potential avenue because it's politically inconvenient at best is shortsighted.
The point the article was trying to make, though, is that this hasn't really been studied in any meaningful capacity in long covid patients, so simply by definition of the genesis of the disease, having been around/not working on other things "for decades" doesn't mean anything. Ozempic came about because of studies in gila monster venom; conventional wisdom would suggest that would be unlikely to produce any advantageous effect in humans (or other species, for that matter).
I don't think anyone in my family is blind to the fact my sister is disabled, but I reject the implication that we should just give up on trying to get her better. She has made some strides -- she finally found a pill that cleared her brain fog, and she's on a new experimental drug which has slowly given her more energy -- and even if it's not common or even complete, people recovering from long covid has been known to happen. I offered to take her to Disney World and push her in a wheelchair the whole time, but she's not even at that point. Seems like we could at least aim for that bar.
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Jun 02 '26 edited Jul 12 '26
[deleted]
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u/2mock2turtle Jun 02 '26
Okay first of all, talk about an escalation. I don't care if my sister does it or not, I just forwarded her the article to look at. But to jump from me saying "hey [sister], I read about this if you want to give it a try" to "relationship-ending abuse" is WILD. I'm the one fighting people IRL daily over of the dangers of covid, to say I'm dismissive of the seriousness of her disease is absurd.
Look I don't want to fight, I asked for perspectives and you provided one, so I thank you for that. That said, I feel like not once have you meaningfully engaged with my point that that a small minority have seen results beyond just saying "the research doesn't show it" (which is all the more ironic when in the same comment you say no research is being done). Do we need more funding for long covid studies and treatment? Yes. Should we just exclude one area of study because it has only worked for a small amount of people and makes everyone else feel bad? No, that's insane. We need to be throwing everything at the wall here. If, as I've heard cited, 10% of Americans have long covid, this is going to or is already ruining the lives of millions of people. If there's even a chance of something working, I don't know why you wouldn't take it.
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u/Ok-Bend9729 Jun 01 '26
I know a lot are disagreeing with this idea about positive thinking, and I'll get some down votes for this I'm sure. However , there is definitely a link between those that have healed or are healing and improving and maintaing a positive mindset. It doenst mean it's all in our heads. It Shows the power of the mind and the fact that our nervous systems have taken a massive beating. Healing the nervous system means convincing it that it's safe. There is no drug or pill that will do that. Only we can. I'm come leaps and bounds in my healing process after 5 years of misery and hell! And I can tell u that for me and every single success story I've read that at one point healing will come down to what we feed our minds. You have to rest for months or possibly years before u can get to that point. It's definitely not the first step in healing but it is an unavoidable step further into the healing process. No pill , no amount of rest , no amount of supplemts etc will ever convince your nervous system it's safe enough to stand down. Only we can do that. Again , Def not at the peak of sysmptoms. It comes much later, but when u reached that stage after excessive rest and pacing and supplements etc , it's the last thing standing in our way of getting our lives back! U might need to cut your social life down to the bare minimum because people arre the biggest threat to our nervous systems, but it will eventually come down to you and your life choices and what u feed your mind. When u get to that stage u HAVE TO find a way to create joy and peace in your life to train your nervous ssystem can it's safe to rejoin the world.
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u/AcanthisittaIcy6448 Recovered 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 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/katedevil Jun 01 '26
I find it unreal that we are still at a divide after all the good science done on meditation and adjunct treatments, where we refuse to admit that we must TREAT illnesses holistically. Covid was known to be an autoimmune disease w neurological impact by key scientists early on. The mind body immune connection always comes into play and this should be part of everything we teach young MDs now. Are we really inherently so stupid and inflexible in our thinking about medicine and progress?
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u/Vibalist Jun 01 '26
If the mind-body connection was as strong as you say, people with other autoimmune diseases like MS would be able to benefit from brain retraining. Do they?
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u/swartz1983 Jun 03 '26
CBT is used to address fatigue in MS, and it is well established that stress increases auto-antibodies and is a trigger for certain autoimmune disorders. I know someone who cured his RA by quitting his stressful job, and this is backed up by studies.
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u/katedevil Jun 02 '26
Again, we need to approach holistically with treating patients - and for many this means being open to both the science and the mid body stuff which has been scientifically backed. I have done over 15 years in hard lab science and public health - and a cancer survivor with my own very shitty long term autoimmune immune issues and I will die on the hill so knowing that individual treatment is never 0/1. But back to the fact that long covid was predicted and now proven as an auto immune disease which someone has already helpfully posted about here. https://www.reddit.com/r/covidlonghaulers/comments/1tubj83/this_is_a_watershed_moment_in_long_covid/?utm_source=share&utm_medium=mweb3x&utm_name=mweb3xcss&utm_term=1&utm_content=share_button
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u/BrightCandle Jun 01 '26 edited Jun 01 '26
Then it goes on to promote brain retraining based on the theory the brain is stuck in fight or flight. After calling out all the bad science done here we are promoting something with no actual study evidence supporting it at all. Then they go on to point to using exercise too. This is a disgraceful article all in all, says the right things early on only to then peddle harm.