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Comment by omnibrain | Hacker News Reader

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.

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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.

https://massmecfs.org/more-resources-for-me-cfs/247-antivira...

> a lot of them think it’s psychological.

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..

"Are you bleeding?"

"No."

"It's probably stress, then."

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.

A hole is just a sign of excessive stress on your skin.

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.

Basically, the mind is extremely powerful.

[1] - https://en.wikipedia.org/wiki/Nocebo

Doctors used to believe allergy is psychological.

I think there are no actual psychological diseases. All have underlying physical causes.

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.

>Unfortunately medicine is still very much in its infancy

It's always the people involved. People are very resistant to change and prefer to hang on to the status quo.

I fully agree with you.

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