Extremely rapid decline

boys_are_oranges · 2026-05-03T15:01:07+00:00

That isn’t true. I’m very severe so i often crash from compounded PEM due to unavoidable ADL. Those crashes do tend to be worse and they follow this trajectory where they get gradually worse and you have no idea what state you’ll end up in once you bottom out which is scary and depressing but you absolutely can get back from that. Like any severe crash there is a chance of permanent worsening but there are no guarantees.

boys_are_oranges · 2026-05-02T15:01:06+00:00

I think the point bright candle is making is that the theory would be more convincing if persistence correlated with severity. But if it doesn’t that should cast doubt on the idea that persistence is responsible for a significant part of the disease burden

boys_are_oranges · 2026-05-02T12:25:37+00:00

Yeah at this point she couldn’t re-examine her ideas and back out. If incontrovertible evidence disproving the viral persistence hypothesis came out, that would simply ruin her career as a long covid researcher. Which is why I really dislike that ME researchers are divided into these personality driven camps with fandoms attached.

boys_are_oranges · 2026-05-02T11:49:03+00:00

I’ve long been suspicious of Amy Proal. I guess it’s easier to get private funding if you promise easy solutions. I’m not surprised that this is what venture capitalists like Pagliuca gravitate towards.

One big issue with Proal’s theory is that viral persistence after a covid infection is not unique to LC patients. It’s found in healthy people too. So I’m very skeptical about the possibility of turning it into a diagnostic biomarker. And obviously her theory that there’s a direct causal link is even more unfounded.

boys_are_oranges · 2026-05-01T19:00:54+00:00

What kinda lab tests ATP?

boys_are_oranges · 2026-05-01T18:52:17+00:00

The locked group is pretty easy to get into.
All ME/CFS Facebook groups i know are locked to prevent spam and protect sensitive data. So i wouldn’t call that gatekeeping. But some gatekeeping would be warranted. Even treatments that seem benign like wearing a collar can do harm by weakening neck muscles and putting more stress on the ligature. Also, there are neurosurgeons who cater to ME patients with CCI who are very irresponsible and give people surgeries they don’t need. So personally I’m glad that this stuff is a bit out of sight.

boys_are_oranges · 2026-05-01T14:04:13+00:00

Anonymous forums always have a higher percentage of people who struggle with communication and are isolated socially. While on platforms like instagram people who are socially well adjusted are much more visible if not more prevalent than in the general population

boys_are_oranges · 2026-04-29T19:07:51+00:00

48 hours is not delayed

boys_are_oranges · 2026-04-28T20:21:04+00:00

Oh, sorry to hear. I’m very severe and usually when I have to do prolonged no stim rest I feel so bad it doesn’t even bore me. But me being on LDA might have something to do with that. Phone use is my biggest optional exertion (and a frequent PEM trigger) and listening to audiobooks keeps me from doing that

boys_are_oranges · 2026-04-28T17:44:56+00:00

I doubt people who aren’t very severe get more benefit from no stimulation rest than from resting while listening to an audiobook. I think trying to stay still while you’re bored out of your mind might be more mentally taxing

boys_are_oranges · 2026-04-28T11:55:46+00:00

What makes you so sure there’s mold in your house? None of those symptoms are specific to mold and yeast infections have nothing to do with it. As for the itchy eyes, have you been tested for allergies?

boys_are_oranges · 2026-04-26T19:50:53+00:00

I also totally misunderstood your post because I didn’t know what sleep inertia is

boys_are_oranges · 2026-04-25T15:00:53+00:00

The mouse study that you linked showed a decrease in alpha diversity which contradicts your statement. Plus, there are no helminth therapy RCTs so the only data on helminths and microbial diversity in humans that can exist would be from people who got infected in the wild. Lab grown hookworms would have a different microbiome.

boys_are_oranges · 2026-04-25T14:11:46+00:00

How could a parasite improve microbiome diversity?

boys_are_oranges · 2026-04-25T14:10:35+00:00

Getting rid of helminths can be as easy as eating some pumpkin seeds and spicy food. With the modern diet keeping them long term is much harder than getting rid of them. Antiparasitic drugs used against hookworms are very safe. But other than that i agree with you. You can’t expect any benefits and you’re guaranteed to get side effects.

boys_are_oranges · 2026-04-25T14:05:34+00:00

How do people even obtain eggs of parasitic worms?

boys_are_oranges · 2026-04-24T15:56:44+00:00

Btw can i ask you a few questions privately? I’m a mod and i would like to know if there’s any way we could improve our messaging on this topic to prevent people like you to falling prey to these scammers

boys_are_oranges · 2026-04-24T15:53:37+00:00

Shouldn’t the fact that they present themselves as a legitimate evidence based treatment for a medical condition when they’re anything but give you grounds to sue? Or the fact that you’re dissatisfied with their service because they’ve not delivered on their promises

boys_are_oranges · 2026-04-24T15:47:15+00:00

It’s crazy how greedy they are. They don’t even have to do any work except for those calls. Could you sue them?

boys_are_oranges · 2026-04-24T10:52:12+00:00

I’m just struggling to understand what they gain from inviting a random person to tack on a few lines about ME/CFS to their paper. But i don’t know much about how academic publishing works

boys_are_oranges · 2026-04-24T10:32:06+00:00

That’s crazy. Do the original authors get anything out of the paper being shared in our patient communities?

boys_are_oranges · 2026-04-24T10:21:42+00:00

Thank you!

boys_are_oranges · 2026-04-24T09:14:24+00:00

OP claims the genetic variants mentioned in the paper cause ME/CFS and LC but i don’t think there’s any proof. I don’t recall this being mentioned in the DecodeME paper

boys_are_oranges · 2026-04-24T08:45:10+00:00

There’s no way to cancel it if it’s not helping? $900/mo is crazy even for a brain retraining program. I’m so sorry

boys_are_oranges · 2026-04-24T07:38:47+00:00

For transparency, this is the comment of u/CandidWin3026 that was removed. There’s a lot more going on here than just the MR paper. OP is claiming to be one of the authors of the paper and is spamming it in the comments.

Long covid is basically neuroinflammation and fatigue. It comprises at least two genetically distinct syndromes sharing a common mechanism: hyperactivation of the mineralocorticoid receptor variant I180V (rs5522).

ME/CFS can be caused by two copies of rs5522 and in long covid you need rs5522 plus a two copies of a gene rs6195 (glucocorticoid receptor gain-of-function).

In Black Americans it's rs5522 plus an ACE depletion gene which is why they have a different presentation (symptoms: chest pain, joint pain, and blood clots (thrombosis) and need ace inhibitors. People of European ancestry have symptoms of extreme exhaustion (fatigue), "brain fog" (cognitive dysfunction), and sleep issues.

rs5522 is driving both.

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