It’s really unlikely that there will be any policy reforms in the US to combat medical misinformation any time soon. We now live under an anti-vax federal government regime in the U.S. which will likely have tragic public health ramifications worldwide.
CIDRAP – During pandemic, ivermectin use rose 10-fold, hydroxychloroquine use doubled, study reveals – Stephanie Soucheray, MA February 24, 2025 “Our findings underscore the urgent need for policy reforms to combat misinformation and mistrust in scientific institutions,” said John Mafi, MD, MPH, the senior study author, in a press release from the University of California Los Angeles. “Eliminating undue industry influence in government, enhancing transparency around scientific uncertainty, and earmarking public funding for clinical trials of new drugs are good places to start.”
It’s more important than ever to pause before believing anything you find online, especially from influencers on social media, including Tiktok, Youtube, and yes even Bluesky. Let me tell you about my “discover” feed on Bluesky. If I post the word disabled or disability or related words, for the next few hours and maybe a day or so I get served posts by influencers who are promoting “life hacks” and supplements, and I get followed by spammy accounts pushing such things. We may have moved away from twitter to bluesky, but the same problems have followed the people to the new watering hole.
The truth is that we may never solve the problem of snake oil and quackery because the people who fall for it usually have been failed in some other way by the healthcare system or the community. Then sadly, the people who do know better often tend to treat those people who don’t like absolute shit. They write them off, ridicule them, call them “idiots”, and present as a hostile enemy. Who wouldn’t run from that? The sick burns satisfy the dopamine and they wind up trying to work out all their venting and rage in public with a real mean streak. It was even reported in The New York Times that many doctors don’t like having disabled people as patients. That leaves a door wide open for dubious actors.
The Long Covid thing is even worse, because there are no proven treatments for it, and so people with Long Covid are sitting ducks for every supplement advertisement and every weird unproven treatment, and the organizations rubberstamp dangerous self-experimentation, and nobody seems to want to rigorously call out very questionable and expensive treatments as folly, even though such unhappy stories are rampant. Almost a year ago I went through a bunch of treatments one particular person documented trying on Reddit. Today this person is posting anti-vax covid content on Youtube, and promoting the same theories that are the basis of quack treatments he tried unsuccessfully.
Whenever Long Covid sufferers talk about their experience, they always highlight taking a pile of OTC pills, and organizations seem to endorse this by picturing a pile of bottles sometimes so numerous it can’t possibly be safe to take them all, and I worry the attempt at demonstrating something is just normalizing it. It seems to be marketing to recreate the scenes that were common in highlighting HIV patients and all the pills they have to take to prevent AIDS, but in those situations they were proven and prescribed approved pills taken under the care of a physician or clinic, not just OTC products and experimenting with supplements.
And the anti-vax stuff that’s thoroughly become accepted in Long Covid circles is problematic. I warned people a couple of years ago that this alliance was toxic. I was afraid to be too assertive about this because I didn’t want to drive even more traffic to anti-vax ideas. (This is always a problem with deciding how to warn people.) But now it does seem like Long Covid research will fall by the wayside, and more people are finding out what I’ve known for a long time – that a lot of Long Covid science researchers are actually networked up with anti-vaxxers, some who sell cures, and are more obviously now pivoting to so-called vaccine conditions instead, likely to follow the politics.
If someone really cared about the effects of what they were publishing, they would be doing mea culpas, retractions, taking their name off stuff. A senior author could take their name off and stop an entire publication, for example, if there were say conflicts of interest that weren’t included up front, or connected to influencers in organizations claiming without evidence that the risk is bigger than it is, or the science contained in the study just wasn’t that great, or maybe the recruitment for the study might be questionable.
What I’m sure about is that doctors shouldn’t be promoting supplements that were initially promoted by anti-vaxxers for protecting against the bogus anti-vax nonsense of “vaccine shedding”. Sadly, there’s a huge amount of disinformation that is target marketed with minor