Yes, Wikipedia: In July 2022, Cowern reported that she had developed long COVID. She was hospitalized in March 2023, as her symptoms similar to myalgic encephalomyelitis/chronic fatigue syndrome continued to worsen, leaving her unable to move
I'm seeing the abbreviation ME/CFS in a lot of comments and didn't know what it means, but... I'll take the abbreviation over "myalgic encephalomyelitis"!
The state of all things Me/CFS is so bad. I remember reading about cases as a child in some boulevard or women’s magazine at my grandmas house, so it must have been about 25 years ago. Seemingly nothing happened since then.
Even the explosion of cases after Covid hit somehow doesn’t lead to change. In Germany many doctors still don’t know it, a lot of them think it’s psychological.
There is some research, but it looks like the study of the promising compound „BC007“ got botched by bad study design, so even after some very promising results in some participants it is likely to get scrapped.
„Hidden disease“ fits it so well, because the people affected „just disappear“, too weak advocating for themselves and with potentially every activity leading to a crash.
I’ve had a family member (Aunt) who’s been diagnosed with CFS since the early 90s whos now in their 60s
There is some good research into anti-virals for treatment. And this has been known for at least a decade. A challenge js few doctors will prescribe the course.
Anecdotally in the late 00s early 10s my Aunt was losing mobility due to CFS causing neurodegeneration. It was at the point she would sometimes crawl rather than walk up a flight of stairs.
Her and I flew to a specialist to get prescribed a cocktail of anti virals (most used for AIDS) and the results were more than a placebo.
Within a year the degeneration didn’t just stop but reversed. Its not a cure for her but it allowed her to reverse enough to have a high quality of life and mobility. Over time she’s progressed back down but who's to say if thats age or condition.
Here’s a link that discusses it, but a search for cfs and antiviruals will return cfs community material and journals.
no worse feeling in the world than hearing a doctor confidently tell you that it's all in your head and that you're wasting their time. Ask me how I know..
it's wild to me, because ME/CFS can, in rare cases, be terminal. autopsy reveals various findings: inflammation of the dorsal root ganglion, degeneration of the frontal lobe, metabolic issues and tangles of proteins in neurons and glia.
RIP to the author of "The Sleepy Girl's Guide to SSDI", who died young to ME/CFS, attributed to neuroinflammation in her autopsy.
Nocebos, the opposite of placebos, are extremely interesting. [1] The thing most people don't appreciate about placebos (and nocebos) is that the effect isn't just 'in your head.' It actually physically manifests - people can e.g. recover from illnesses measurably more quickly with placebos.
And the opposite is true of nocebos. So for instance one of the most common examples of nocebos is somebody will be given a terminal cancer diagnosis but then die long before the cancer could have been the cause of their death. They're so convinced that they're dying imminently that it becomes a self fulfilling prophecy. I expect a similar phenomena is why elderly couples tend to follow each other into the grave in short order. Dying of heart break or loneliness is not necessarily just rhetorical.
if only we could objectively (and easily) measure pain and energy levels (feeling tired) and even stress. stress is used here as a dismissal (not by you but the hypothetical doctor you are parodying) but stress too is a real health factor that people need help with.
Nobel Laureate Barry Marshall (co discoverer of Helicobacter Pylori, cause of stomach ulcers) gave a talk to a graduating class at the university he went to (can't find link, but it's on the net somewhere). He talks about "stress" being a fertile area of research for medical advances. His argument is that stress is rarely the direct cause of anything. It might be a secondary cause, or it might be a symptom, but research into ailments currently attributed to "stress" is a really good direction for the aspiring young medical research scientists out there.
Yeah, sorry, that wasn't meant to be dismissive of stress or burnout. There's probably a reason doctors always ask about it, but it can be an annoying to have to talk about your job when you've got physical symptoms.
(As a sidenote, why do doctors always assume stress is work related? Work is fine, but have you looked at the world...)
that wasn't meant to be dismissive of stress or burnout
just to be clear, i knew it wasn't.
why do doctors always assume stress is work related? Work is fine, but have you looked at the world
oh absolutely so much. i hide in my work when i have stress at home. i can think of two factors. as far as the world is going, most people don't care enough about it to let that stress them, so they do't even see it. myself i avoid stress from world affairs by actively working on making things better (within my means, by showing my friends and neighbors that there is hope yet for the future). but there is also stress at home, and that seems to be also overlooked. i think the reason here is that the doctors are not trained to deal with that and also don't want you to come to them to handle your family problems. there are other trained professionals for that. though personally it would really be nice if we had a family doctor who not only deals with physical but also mental health.
I agree with this, as a monist. Unfortunately medicine is still very much in its infancy in this regard - many things are too subtle or just still hidden.
It seems no doctor takes it seriously still: just you being a whiner and get over it. My mother had it in the 80s and it was really not a thing; must see a shrink, she did, didn't help of course etc etc. Never got any help besides 'well, just rest and don't worry too much'.
I think it has more to do with the doctor thinking about the absolute nightmare they are going to have to deal with interfacing with insurance companies trying to treat you. The dismissal is just their self preservation.
I have noticed that a lot of their job is playing insurance games to treat (get past preauthorizations) easily documented health issues, let alone things like ME/CFS or long COVID.
That’s a US-specific problem. Doctors dismiss patients’ complaints all the time in countries with universal healthcare.
I think the issue is much simpler than that: if the doctor is out of ideas (and doesn’t know of a specialist to refer to) they just get frustrated and give up.
I am in the process of recovering from CFS (currently back to working 100%, though still not being where I want to be with everything else) and at no point my doctor has done anything but take it seriously. Of course, a doctor can only do so much with a disease as nebulous as this, but he (as well as work, family and other people around me) giving me breathing space and adapting to my situation has been crucial for my improvement, I'm pretty sure.
It is, in general, a poorly understood disease (as lots of others in the thread are pointing out). And everybody's case is different.
I will point out that I've never gotten so much unsolicited low-quality advice before, though; people who barely know me will make a very confident diagnosis on-the-spot once they hear I've got a long-term illness. E.g., “you're vitamin D deficient” (no, I'm not, and anyways, I've been taking vitamin D supplements for three months just in case, with no effect). I'm sure they mean well, but it becomes tiring really fast when everyone does it. (There's a select few people who seem to be much more careful about throwing our random crap like that, including, unsurprisingly, all the doctors I know.)
