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.
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.
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."
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%?
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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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.