What was wrong with her? Some type of long Covid or something?
I am so glad Physics Girl is getting better with rest!
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.
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.
https://massmecfs.org/more-resources-for-me-cfs/247-antivira...
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..
RIP to the author of "The Sleepy Girl's Guide to SSDI", who died young to ME/CFS, attributed to neuroinflammation in her autopsy.
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.
Basically, the mind is extremely powerful.
"No."
"It's probably stress, then."
(As a sidenote, why do doctors always assume stress is work related? Work is fine, but have you looked at the world...)
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 think there are no actual psychological diseases. All have underlying physical causes.
It's always the people involved. People are very resistant to change and prefer to hang on to the status quo.
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.
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 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.)
yeap long covid