Talk about throwing stones from a comfortable glass mansion. And utterly clueless, which is one of the main reasons why the patient community has to do any of this in the first place.
This phenomenon reflects a deeper problem in modern healthcare: the rise of crowdsourced medicine, where social media replaces scientific inquiry, and anecdotes masquerade as evidence.
For long COVID patients, this dynamic is particularly hazardous. Desperate for relief, and often frustrated by the slow progress of medical science and the fragmented nature of care, many patients turn to online communities where hope often outruns reason.
The problem is not that social media is replacing medicine. The problem is that medicine has completely failed and abandoned tens of millions of people, leaving with no other option than figuring it out on our own. Which is the thing the patient communities have been trying to change, only to be met with a perfect record of: fuck off, whiny losers. This is like an occupying army forcing a state of famine on a population and scolding them for being stupid enough to eat insects and roots, or drinking contaminated water after having destroyed the infrastructure.
And medical science is not being slow here. It's completely missing from the picture. Instead literal pseudoscience has been dominating this issue for decades, while care is not fragmented, it's completely negligent and defiant about it.
Plus, the author completely cherry-picked by looking for confirmation, did not spend more than 10 minutes at it. As I said many times, I have read from the Long Covid sub-reddit every single day since it started, tens of thousands of comments by now. There have been these cycles of experimentation, and almost all of those have stopped. In fact the dominant information out there is that nothing works, that patients are completely abandoned, and only time actually matters. Which is entirely factual. It's all down to chance. Some people simply can't accept that and try anyway, because unlike the caricature necessary to build about us, the patients don't give up. Unlike the medical profession, which hasn't even put the bare minimum of effort.
Unlike physicians bound by ethical codes and legal responsibility
This is complete fiction. Your codes and responsibility mean nothing here, and the profession has been completely derelict in any such obligation. Get out of here with this bullshit. It's precisely because you are completely shirking any and all obligations on this issue that everything is FUBAR.
We cannot silence social media, but we can reshape how we engage with our patients and discuss the role social media plays in their condition. Ignoring or dismissing their concerns risks further alienation. Instead, we must listen, educate, and reinforce the distinction between support and medical advice, between hope and evidence.
The medical profession is by far the biggest source of misinformation and confusion about LC, especially its promotion of pseudoscientific models variously built around beliefs, fear and/or deconditioning, none of which are relevant here. This cannot be fixed by any of this crap, especially as they literally have nothing credible to offer, and are obviously not even trying. If anything, the profession is only becoming more and more like alternative medicine each day, don't even have anything better to offer here.
I would have left a comment, but only professionals can do that. Because they love their echo chambers so much, and can feel smug about being superior in their negligence, while never hearing about how they are completely wrong about it. This is a profession where results don't even matter. They smugly judge themselves based on whatever intentions they feel they are aspiring to, and completely ignore reality.
www.medpagetoday.com
covidinstitute.org
