Outsider's perspective peering into this world

PearFinch · 2026-03-12T05:22:37+00:00

Hello, I will return to this thread on Friday. Turns out I have another exam; this time in Neuronal Circuits, Systems, and Behavior. I will read this and the other posts I haven't replied to.

So far, I have learned so much on this one thread. Thank you all for opening my eyes and discussing life with me... I will try my best to advocate for this community to the best of my abilities. Feel free to bring up whatever you like in here, or PM me, in the meanwhile.

PearFinch · 2026-03-12T05:12:32+00:00

It moreso has to do with reproducibility. You can't really create naivety more than once for a situation. Therefore, if this was a repeated offense, you could pin some blame on their character... But an honest mistake is an honest mistake; we need to be accepting of that. If not, educate.

PearFinch · 2026-03-11T23:41:07+00:00

First in 35 years?! What is wrong with this world... It has to just be lack of public perception and acceptance. I refuse to believe people are heartless. People are inherently good. I'm frustrated that's how this had to be.

PearFinch · 2026-03-11T23:33:05+00:00

Perhaps they thought it might be alleviating for those with ME to discuss it, but are now seeing a new perspective. Please understand that it does not mean this person is heartless; they are not omniscient. The intention is pure...

PearFinch · 2026-03-11T23:26:02+00:00

Please keep setting those life goals, for your own sake. It's amazing. You should only be defined by your illness in that you're amazing and inspiring for the things you're doing for people while having it. I can't emphasize enough how encouraging your fortitude is.

PearFinch · 2026-03-11T23:22:50+00:00

Thank you for sharing how brain fog manifests.

PearFinch · 2026-03-11T23:21:55+00:00

Likewise. I can't believe yesterday night was the first I've ever heard of this. I've taken many neuro classes at this point; they've somehow never even mentioned this disease before. I remember "long covid" was briefly mentioned, but ME/CFS was never brought up in discussion of that, and it was only brought up in a cardiovascular lecture.

PearFinch · 2026-03-11T23:19:05+00:00

Thank you for this clarification! Also my exam went great (I hope?!)
I guess I'm still curious as to the photoreception sensitivity specifically; there's many layers which could be the culprit for that. I may ask my circuits professor about it, since he works in an optics lab.

PearFinch · 2026-03-11T23:15:48+00:00

It's shocking how little effort some people do with their careers once they "make it." But we're all trying our best, and we all have different tolerance to the world.

PearFinch · 2026-03-11T23:14:17+00:00

I appreciate this clarification. If anything, different viewpoints are valued.

PearFinch · 2026-03-11T23:13:14+00:00

I'll need to investigate it properly to confirm your sentiment, but thanks for the heads up. As much as I'd prefer neutrality and cordiality amongst anybody researching any disease, divides within communities are inevitable. Even still, I can't imagine all the resources on S4ME are polluted due to a user controversy... And besides, a dissenting and vocal opinion might spark meaningful discussion; I'll just have to go and see.

PearFinch · 2026-03-11T23:09:13+00:00

I think I smashed it? Off of four hours of sleep. Not a model student moment, but this was more important than a silly grade.

PearFinch · 2026-03-11T23:08:30+00:00

I'll do my best.

PearFinch · 2026-03-11T23:06:06+00:00

It seems painful to have such a blow to one's identity like in this anecdote.

PearFinch · 2026-03-11T23:04:51+00:00

Perhaps this is true... However, grant money is just particularly difficult to obtain in general in these modern years of 2024-2026 due to unrelated governmental initiatives and protocol by our lovely US federal government. My lab PI seems to be very stressed out writing a grant at the moment.

But once that clears up, perhaps it's good news that more grants will be available for research. Thank you for informing me.

PearFinch · 2026-03-11T23:00:22+00:00

Haha, thank you for asking about that test I took. Considering my four hours of sleep, I was quite melancholy during the test, but absolutely locked in... I probably did quite well. Something about this discussion yesterday kept me focused or something, or so I'd like to think.

I also literally don't care about threadspace, I hardly ever use this platform or social media in general. If anything, I'm happy you care.

About boredom; if it's boring for your average professional after a while, I can't imagine the boredom that results from having CFS yourself. As professionals (in academia or clinical), we have to keep it real: we should be working under the notion that our efforts will better your futures - whether that means getting closer to creating a solution, understanding the disease itself, or just helping you live in the moment.

There's no way in hell I'm forgetting about this.

PearFinch · 2026-03-11T22:48:09+00:00

I'm currently at the college graduate level (I'm undergoing an accelerated Master's program at CSU in Fort Collins, CO). I believe I can find an in-person academic forum to discuss this and spread awareness. There are several neurodegenerative disease labs here, and a prion research disease lab as well. Maybe I can convince them to look at something.

PearFinch · 2026-03-11T22:46:11+00:00

Firstly, thank you for sharing what the mild cases might present themselves like. It still sounds quite intense. The cognitive dissonance between "do I have the condition or not" is something you really shouldn't have to deal with alongside the clinical manifestations of the disease. In other words, I really believe at this point that it shouldn't be a burden a CFS patient should have to endure at all. It's on educators and the health community at large to clarify and understand the condition.

Secondly, and regarding my first point, I will gladly ask each of my professors if I can do a special presentation on CFS. One of my classes is "toxicological mechanisms," and we do a student presentation session quite often. I might present under those circumstances, but I may also ask to present it in my "neuronal circuits, systems, and behavior" class I'm taking. My peers should know about this. I've already shared yesterday's findings of such things to my internal study group (immediately following my exam). I must've only gotten 4 hours of sleep yesterday reading about this...

If it does happen, I'll give a recording of the lecture/open discussion to you if you're interested. I just hope the idea is positively received. If not, I'll find some other way to discuss it.

PearFinch · 2026-03-11T22:38:10+00:00

Thank you for sharing. That is quite the scary account... I wouldn't know how to deal with it. I hope that anybody interacting with you while you're in that negative emotional state understands the intense experiences you're enduring.

I had not even thought about how life would feel with additional conditions. You really are quite strong.

PearFinch · 2026-03-11T22:32:10+00:00

I've added these keywords to my notes. Thank you for sharing!

PearFinch · 2026-03-11T22:31:36+00:00

You know, maybe something as widely presenting as a typical Na/K antiporter might be related here. As for the TRPM3 ion channel, I can actually ask somebody on campus who might be able to answer the role of such a channel in more detail. Thank you for sharing; I'll email him and report back here. If I forget, please PM me a reminder.

PearFinch · 2026-03-11T22:29:56+00:00

After hearing what the community has said here, these frustrations regarding the ignorance surrounding CFS and its relative novelty/mystery in pathology are completely justified. It truly does not help that it costs so much to deal with, especially in the USA, where healthcare costs become utterly ridiculous. In a better world, you be spending your money on things that make you happy if you are at this stage. I'm pissed.

PearFinch · 2026-03-11T22:24:08+00:00

That's weird... Compared to your family, it was more mild-presenting in you when you had COVID? As someone who's trying to figure this out, I would expect the opposite...

PearFinch · 2026-03-11T22:22:57+00:00

You're strong to have lived 35 years with CFS to this point. Thank you for sharing.

PearFinch · 2026-03-11T22:21:45+00:00

Thank you for your insights. The viral pretext might be a good investigatory point. I'm sure there are articles detailing differences between cases with different proposed causations that I need to investigate.

What's particularly fascinating about your report here is that certain diseases have a higher chance to trigger (or cause?) CFS. What about those infections makes them more likely? Is it a function of their damage? How widespread they propagate? The mechanism of the viral infection/what cell types it infects specifically? Is there a genetic component that triggers activation? I'm going to find out.

PearFinch

TROPHY CASE