by: Chloe HumbertPosted on:

Real suffering — dubious and expensive treatments.

ABC News – Too many children with long COVID are suffering in silence. Their greatest challenge? The myth that the virus is ‘harmless’ for kids By Hayley Gleeson June 16, 2024 A couple of months later, having dug deep into the research on long COVID, Brett took Jack to Europe, where he underwent several cycles of an expensive blood filtering treatment called H.E.L.P. apheresis. The enormous cost — about $30,000 all up — should have ruled the trip out, but with the generous support of family and friends, they raised enough money to go. […] The microclot hypothesis as a driver of long COVID remains just that, and some experts have warned there is little published evidence showing apheresis is an effective treatment.

Unfortunately I’ve seen some really heartbreaking stories, like one redditor family restaurant owner with ME type long covid conditions looking for treatment, who came to believe it was caused by getting vaccinated not the multiple infections they had, after seeking out the care of a covid contrarian attached to a right-wing anti-vax organization. People are being led in all sorts of directions when they’re desperate and looking for answers and relief.

I’ve heard of influencers who promise secret regimens for Long Covid or other chronic ailments, sometimes luring people behind paywalls and selling them supplements, treatments, or even just ritual regimens to perform. I recently rewatched The Inspector General with Danny Kaye from 1949, and the musical number about chronic illness and snake oil demonstrates how the same old tricks are not new.

The husband of Physics Girl recently made a remark that reveals that they’re probably inundated with such target marketing online.

Dianna Cowern @thephysicsgirl #MECFS is unimaginably isolating, especially for severe patients like Dianna. The disease just doesn't make sense; even for me, it's taken a year of caring for her every day to start to understand. To get a sense, Dianna has spent the last year and a half in her room, unable to watch tv or read a book or spend time with friends. She cannot walk or take care of herself. She can brush her teeth and feed herself, but not much more than that. We can cuddle and hold hands, but sometimes that's too much for her. It's so removed from normal life, and so much worse than you could ever imagine. It's hard to share these things, because I fear people will blame me or blame her for not treating her properly, for not taking this medication or that supplement, or following such and such a protocol. Or worse yet, suggesting that all she needs is to get up and go for a walk. Even on this post, people will say those things. But there's no consistent treatment or even diagnostics at this point. So, we are left alone, in pain, wondering if what we're doing is right or wrong, if there's something else we should have done a year ago that would have avoided all this. We try not to think like that, but it creeps in from time to time. If you are a physician, please consider getting involved in treating and researching #longcovid and #MECFS While Dianna is still very sick, her doctors and treatments ease her burden and give us hope. Written by Kyle, Dianna's husband.
Dianna Cowern @thephysicsgirl #MECFS is unimaginably isolating, especially for severe patients like Dianna. The disease just doesn’t make sense; even for me, it’s taken a year of caring for her every day to start to understand. To get a sense, Dianna has spent the last year and a half in her room, unable to watch tv or read a book or spend time with friends. She cannot walk or take care of herself. She can brush her teeth and feed herself, but not much more than that. We can cuddle and hold hands, but sometimes that’s too much for her. It’s so removed from normal life, and so much worse than you could ever imagine. It’s hard to share these things, because I fear people will blame me or blame her for not treating her properly, for not taking this medication or that supplement, or following such and such a protocol. Or worse yet, suggesting that all she needs is to get up and go for a walk. Even on this post, people will say those things. But there’s no consistent treatment or even diagnostics at this point. So, we are left alone, in pain, wondering if what we’re doing is right or wrong, if there’s something else we should have done a year ago that would have avoided all this. We try not to think like that, but it creeps in from time to time. If you are a physician, please consider getting involved in treating and researching #longcovid and #MECFS While Dianna is still very sick, her doctors and treatments ease her burden and give us hope. Written by Kyle, Dianna’s husband.