The Painful Truth About Long Covid

I have had Long Covid since 2022. I was desperate for answers and casting around the internet for some hope when I came across mind-body approaches on YouTube. 'You have to forget your symptoms; live as if you didn't have them', was the advice. When I brought up the idea of the exercise intolerance I was experiencing with one coach mentioned in this article, they said that this was a damaging belief and that resting was not efficacious - that I needed to stop worrying about my symptoms. My GP in the UK gave me similar advice. I heeded this advice, didn't rest, didn't leave my job, carried on as normal - and I went from being quite mildly affected to being effectively bedbound. I think any balanced discussion of mind-body approaches needs to include the voices of people who not only did not get better, but got dramatically worse. On a separate note, a recent Yale study injected mice with the blood of Long Covid patients; other mice received blood from healthy controls. Guess what happened - the mice who received the blood from LC patients developed the symptoms those patients were experiencing. Obviously, there can be no suggestion of 'learned behaviours' or 'repressed trauma' here. There are thousands more studies that prove biological abnormalities in LC or ME patients.

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you cannot use brain retraining or physical therapy to cure long covid or me/cfs. they only make the condition worse.

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What I expected based on the headline: A well researched article about the many ways that anything related to Covid has become so politicized it is causing issues with funding and sharing of accurate scientific data. What I got: A poorly researched, barely veiled treatise on how Long Covid is curable with brain retraining, a scientifically questionable approach that fundamentally argues that people can think away Long Covid. What the medical researchers who claim to be silenced by patient advocates sound like: A 19th century doctor studying "hysteria" who believes deep down that Multiple Sclerosis is all in those delicate lady's heads saying, "those darn women have too much power! Now whenever I suggest that their symptoms are all in their heads they get all mad and I get shut down! It's silencing meeeee!" What I'd like the author of this article to explain: The vast and growing body of research conducted by well respected scientists at the top research universities around the world that show the biomedical bases for Long Covid. Literally 4 days ago this study was published that injected autoantibodies from Long Covid patients into mice and found that, "Passive transfer of IgG from individuals with LC into mice induced fatigue-like behavior, loss of balance/coordination, thermal hyperalgesia, small fiber nerve damage, and increased pain-related neuronal activity, recapitulating patients’ symptoms." To oversimplify, they injected Long Covid blood into mice and the mice suddenly exhibited Long Covid symptoms. Did the mice also get caught in a "neural feedback loop?" Did an "overactive nervous system" suddenly inflict these mice as well? Utter bullocks. https://www.sciencedirect.com/science/article/abs/pii/S009286742600509X?dgcid=coauthor I won't list the thousands of (well designed) studies that exist that show a clear biomedical basis for Long Covid (that the author of this article clearly is either unaware of or willfully ignoring) but the total lack of any mention of that body of literature calls into question the validity and objectivity of this article. Few scientists will deny that there is a powerful mind/body connection. Few people in the world of Long Covid research would dismiss that brain retraining can have a positive impact on symptoms. However, this article focuses on anecdotal stories of miraculous recoveries and suggests that, if only those darn Long Covid patients would be quiet, the "real" cure for Long Covid would be available (or at least studied). A brief perusal of any Long Covid space will yield hundreds of miraculous recovery stories with dozens of different miracle cures. And yes, a focus on brain retraining at the exclusion of other avenues of research is bad for Long Covid patients because it does, indeed, funnel attention and funding away from finding treatments for the demonstrably real biomechanical basis of Long Covid.

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I appreciate this in depth article. For me it illustrates just how long it takes to do good science. None of us should expect quick, easy and instantly clear explanations and therapies. Unlike natural disasters that affect a local population the pandemic affected literally everyone in the world. It will take a long time to understand what it was, what caused it, what an intelligent response should be next time, what happened in the aftermath (i.e. long-covid). It is a task for consultation and investigation on a massive scale. In the long run the value of advancing the global capacity for cooperation and consultation may well exceed the benefit of the cure itself.

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