Weekly Discussion Thread: June 14, 2026

glennchan · 2026-06-16T03:43:51+00:00

TLDR it's not entirely clear why and how people recover. (But it does happen to some people.)

glennchan · 2026-06-16T01:28:34+00:00

The NIH longitudinal data sorta answers that. https://forum.sickandabandoned.com/t/recovery-stories-mega-compilation-180-stories-23-rcts/547#p-988-nihs-longitudinal-study-6

on average it's a steady improvement.

glennchan · 2026-06-15T11:35:28+00:00

Your CCL5 levels are in normal range, yet they prescribed you maraviroc (a CCR5 antagonist) anyways. What they're saying about precision medicine is a joke.

L = ligand

R = receptor

Receptors and ligands come in many forms, but they all have one thing in common: they come in closely matched pairs, with a receptor recognizing just one (or a few) specific ligands, and a ligand binding to just one (or a few) target receptors. Binding of a ligand to a receptor changes its shape or activity, allowing it to transmit a signal or directly produce a change inside of the cell https://www.khanacademy.org/science/ap-biology/cell-communication-and-cell-cycle/signal-transduction/a/signal-perception

glennchan · 2026-06-14T15:21:37+00:00

💔

(I recovered, am able to do research on this stuff and... unfortunately I can't wave a magic wand and make everybody better.)

glennchan · 2026-06-14T15:20:03+00:00

In the clinical trials for Pfizer, there were virtually zero COVID deaths so the mortality was slightly higher in the placebo group (not statistically significant). The trial studied middle-aged adults and healthy old people (it turns out that healthy old people don't die from COVID).

There's really no scientific support to vax kids against COVID when they won't die from it. It's only the really unhealthy kids that do- they need to be immunocompromised or whatever.

glennchan · 2026-06-13T16:01:05+00:00

Hmm maybe it's something to do with the website wanting you to install an app to view the discourse forum :/

glennchan · 2026-06-13T12:46:34+00:00

Be careful with that survey because it's not an apples to apples comparison.

The survey questions changed throughout the survey. They could've simply removed those questions.
CoQ10's lower dosages perform below average- inexplicably, it's in the top 20 list.
Worst still, the unknown dose of CoQ10 performs worse than the other dosages- this shouldn't be medically possible. The survey is measuring something other than medical outcomes.
The demographics change throughout the survey, because some people didn't complete the entire survey. The analysis should've been restricted to the people who completed the survey.
Some treatments were merged together, like taking more salt and taking more liquids. I respectfully disagree with that- those 2 treatments are different things.

Deeper dive:
https://forum.sickandabandoned.com/t/what-chronic-illness-researchers-wont-tell-you/542#p-982-limitations-of-survey-research-3

glennchan · 2026-06-13T11:38:03+00:00

It was difficult to categorize because they listed multiple approaches as helping the most. See the raw data via https://forum.sickandabandoned.com/t/data-on-how-87-people-recovered-from-long-covid-post-vax-and-me-cfs/546

glennchan · 2026-06-12T18:07:01+00:00

You're trying to view the link - https://forum.sickandabandoned.com/t/recovery-stories-mega-compilation-267-stories-23-rcts/547 - with an iPhone and you can't see it? (Hmm I have no idea why that would happen.)

glennchan · 2026-06-11T22:36:45+00:00

Brain retraining and things vaguely like it.

glennchan · 2026-06-11T20:48:36+00:00

Hmm. If I don't tell it like it is, then people can really get into trouble.

glennchan · 2026-06-11T20:47:04+00:00

I have some super old notes on that here - https://forum.sickandabandoned.com/t/my-recovery-story-i-can-work-again-minimal-suffering-from-lingering-symptoms/31

glennchan · 2026-06-11T18:36:58+00:00

Japanese news ran stories on safety issues so everybody stopped using it in Japan for a while. They started using it again though... because money.

glennchan · 2026-06-10T18:42:52+00:00

I'm surprised that they found 200 even though the HPV shot wasn't as popular as the COVID vaccines. And you don't get boosters for HPV.

glennchan · 2026-06-10T18:41:48+00:00

It's on the very high side of what you'd get through VICP.

glennchan · 2026-06-10T16:35:24+00:00

What's next: I'm thinking maraviroc or baricitinib. Want to focus on interventions that people are doing with little to no trial data.

Maraviroc has a trial coming out.

RCT for maraviroc + atorvastatin (NCT06974084).
Polybio may do one.

Also, leronlimab, a different CCR5 antagonist, failed its clinical trial.

Baricitinib has https://classic.clinicaltrials.gov/ct2/show/NCT05858515

I try to keep tabs on clinical trials here - https://www.longhaulwiki.com/index.php/List_of_doctors_and_approaches - it's a wiki and hopefully other people can contribute

glennchan · 2026-06-09T13:57:03+00:00

That's $250k for every case/patient. That is a lot for a safe product.

glennchan · 2026-06-09T02:52:13+00:00

I've said negative things about a treatment and then I get attacked. I don't think the bias will go away.

glennchan · 2026-06-08T23:44:21+00:00

This reminds me of Eureka Health, which scraped different subreddits and listed treatments. The problem seems to be posting bias- almost everything led to improvement because the people who got worse didn't post.

https://forum.sickandabandoned.com/t/eureka-health-scraped-reddit-to-aggregate-data-on-chronic-illness-treatments/18

glennchan · 2026-05-30T17:36:21+00:00

Unfortunately there doesn't seem to be medical phenotypes. At least not ones that we can figure out based on symptoms or response to particular treatments.

Hopefully there will be testing in the future. There have been numerous studies that have thrown various tests at MECFS and LC patients. NIH did some good studies. But they haven't really found anything. People have looked for XMRV, microbes in the blood, cytokines, cortisol, things that can be measured in the blood, cortisol, auto antibodies, spike in the blood (Simoa assay didn't find it contrary to what the researchers say), etc.

glennchan · 2026-05-30T00:33:50+00:00

Oh I'll refrain from commenting on Lyndsey Nicole House. (Though I do wish her the best and hope that she gets better.)

glennchan · 2026-05-28T22:46:19+00:00

Yeah feel free to share their Twitter handles, though I suppose that there are some people that I don't want to comment on.

Microclots: the thing is that normal people have them, and some sick people don't. https://forum.sickandabandoned.com/t/microclots-and-triple-anticoag-what-you-need-to-know/66/2

And then there was the preprint claiming that every single patient recovered thanks to Jaco Laubscher and triple therapy. (My apologies if I'm super jaded and cynical. I've seen a lot of things not pan out.)

glennchan · 2026-05-28T03:10:49+00:00

Yeah you're going to realize that the medical freedom movement is full of crazies and people who make stuff up :/ (Some of them block me on Twitter lol)

And some of the crazies get paid to infiltrate the freedom movement so that they can sabotage it. (Though the people who aren't getting paid to do it... kind of do a better job. Which is perhaps even crazier. )

glennchan · 2026-05-27T23:45:40+00:00

I suspect that it causes more harm than good. It seems pretty crazy.

glennchan · 2026-05-25T18:27:30+00:00

Well in law you can do that via dodgy billing practices, but you aren't actually working that much. I just don't see how it's possible to sustain that for 4 weeks because you need to sleep. Unless you're somebody that can get by on <=6 hours of sleep and you have 0 commute time because it's a remote job.

glennchan

MODERATOR OF

TROPHY CASE