"Before LLMs I believed the analogy—I think it was Yud’s—that making AI via chatbots was like making real flowers by getting really good at sculpting wax. For most of the past 25 years, I thought we’d hit RSI via RL before anything learned English.

In that regard, I see us as lucky. AGI will come from “thoughts” we can read, literally. As important, LLMs are an expensive industrial process, not conventional PC software. AI cannot trivially self-improve as it could were it mostly code—as many assumed it would be.

None of this was guaranteed. AGI was feared to happen in a basement. It was supposed to explode.

Because it doesn’t, we can let capabilities out one by one. We can see what genuinely sucks about AI. We can integrate, adjust, and live in the Kurzweilian line-fitting world.

Even if it’s been unclear at times how long our stay is, I’m grateful we’re here."

- @goodside on Twitter

For years, we've seen many posts from people in the UK asking about Long COVID doctors, with information dispersed only among comment replies and word of mouth.

We decided to make things more efficient by creating the first-ever comprehensive listing for Long COVID doctors and clinics in the UK!

http://lcmedata.org/ukdocs 🇬🇧

We painstakingly collated hundreds of comments from Reddit, Twitter, Facebook, and group chats with only the most-rated doctors, pricing/visit info, and pros and cons from real patients.

25 doctors and clinics are listed, from NHS to private specialists, and pharmacies for LDN and ketotifen.

This is a living document and will be continually updated. Suggestions and updates welcome!

---

This data was collected and organized by Highly Agentic LC/ME, a group of patients from tech and research backgrounds volunteering their time to give back to the community.

https://doi.org/10.1016/j.lanepe.2026.101744

This was the first proper randomized trial with a sham-treatment control group. Almost all patients tested positive using the Elisa test for GCPR antibodies.

Per follow-up testing, immunoadsorption did exactly what it's supposed to do - it stripped out the autoantibodies - but symptoms didn't improve at all vs controls. No movement on fatigue, function, brain fog, or grip strength. In the milder patients it actually looked slightly worse. Plus more side effects (some blood clots).

This fits the wider pattern we're seeing: the blood-plasma-swap trial last year found nothing, and both rituximab trials failed. So that's three different "reset the immune system" approaches all coming back empty in controlled trials - even though the uncontrolled case reports kept looking promising.

Previously: I analyzed all Long COVID/ME rapamycin anecdotes on Reddit

I have a 3.3 million record database on my computer of every post from 14 Long COVID and ME subreddits. De-duplicated to one baricitinib record per username and ran each anecdote through Claude Code with a structured prompt, then explored the bits that looked interesting.

Of 41 unique Redditors who took baricitinib, 36 reported a clear outcome: 64% reported at least partial benefit, 25% saw no effect, and 11% got worse.

Outcome	n	% of takers
Very effective	10	28%
Somewhat effective	13	36%
No effect	9	25%
Somewhat worse	1	3%
Much worse	3	8%

(keep in mind there is a MASSIVE selection bias here, the stats are likely not this good)

Time to effect

Of 23 positive responders, 11 gave a specific time to first noticing anything (from first dose):

Time to first effect	n
<2 weeks	6
2-6 weeks	5
not stated	12

Four felt something within the first few days, a couple even on day one ("PEM went away almost instantly"). Most who gave a time landed in the 1-3 week range. Onset did NOT track dose - fast and slow responders were on similar doses, so onset looks to be pretty binary and individual.

Testing

Baricitinib is an immune drug, and a chunk of people ran inflammatory labs around it - cytokine panels, interferon, IncellDx-style immune panels, IL-6/IL-8, ANA. I split takers by whether they tested before starting:

• 10 of 41 tested beforehand; 9 said the labs guided the decision; 10 also re-tested after (to track response or for safety monitoring).
• People who tested first responded better. 77% of them got better and zero reported no effect, vs 59% got better / 33% no-effect among those who didn't test.
• But testing did NOT prevent bad reactions. 2 of the 4 who got worse had tested beforehand - one was even guided by labs. However, the serious reactions (one hospitalization with electrolyte/kidney issues + MCAS flare, one Lyme reactivation, early flares) looked idiosyncratic and safety-related, not something the inflammatory panels would have predicted.

Dose

4 mg/day was by far the most common target. Several people titrated up from 1-2 mg, usually for tolerability rather than because more worked better. A few held 2 mg (sometimes dose-reduced for kidney function) and still improved.

What improved (for responders)

Symptom	% of responders
Energy / fatigue	43%
Brain fog	39%
PEM	30%
Pain	30%
Overall / back toward baseline	17%
Exercise tolerance	13%
POTS / dysautonomia	9%
Sleep	4%
Mood	4%
MCAS	4%
Gut	4%

Side effects (% of everyone who took it)

Side effect	%
Infections (URIs, UTIs, cold sores)	7%
Acne / rash	5%
GI upset	5%
Headache	5%
MCAS flare	2%

The worse-reaction profile

Only 4 of 36 worsened, but the bad ones were pretty bad: a trial participant hospitalized with severe electrolyte/kidney problems and a months-long MCAS flare, a Lyme reactivation, and two people who flared hard in the first week or two and had to stop.

Caveats

• Self-reported, uncontrolled,cqne selection-bias - people who improve are really motivated to post, especially about an exotic drug, and Long COVID can fluctuate on its own, so some "responses" are noise.
• Many were on concurrent treatments (SCIG, other immune meds, big supplement stacks) - attribution to baricitinib alone can be tougher with a non-immediate onset.
• The LLM classification is approximate and the testing/onset splits run on small subsets, so trust the rankings more than the exact decimals.

Thinking about what to do next: Maraviroc? Stellate ganglion block? I'm open to requests.

If you're seeing double... I'm reposting to correct a data error!

I had scraped the full history of 11 LC/ME subs via the free Arctic Shift API for Reddit, then loaded the 213K posts + 1.7 million comments into a SQLite database.

But... I realized the original version of this post didn't de-duplicate by username - so people who posted multiple times (one user had 28 separate posts) got counted as multiple separate "people." Don't do data analysis with brainfog, folks!

I now have de-duplicated to one record per username and re-ran each first-person rapamycin anecdote through Claude with a structured prompt, then, using my curiosity, explored it further.

Luckily, not too much changed.

• "Takers" dropped from 264 to 110 unique people - the rest were repeat posts by the same users.
• got better changed from 42% to 45%; got worse from 12% to 19%.
• "Mostly PEM-specific" was wrong - PEM-specific improvement is actually 24%; 42% just report general improvement with no specific symptom named, and energy/fatigue (30%) is the most-named.
• Onset is not really bimodal - the "2 month tail" was mostly an artifact of repeat posts plus a bug where I'd grabbed a later-update date instead of true onset. It actually skews early (<2 weeks).

Summary

Of 95 people who took rapamycin and reported a clear outcome, 53% reported at least partial benefit, 22% got worse...

Outcome	n	% of takers
Very effective	7	7%
Somewhat effective	43	45%
No effect	24	25%
Somewhat worse	16	17%
Much worse	5	5%

Onset

Of 50 responders, 30 gave a specific time to first noticing anything (measured from their first dose):

Time to first effect	n
<2 weeks	17
2-6 weeks	8
6 weeks-3 months	4
&gt;3 months	1
not stated	20

Most who gave a time felt something within 2 weeks, several on the very first dose. Almost no one took longer than a couple of months to notice a positive effect. Note this is time from starting the drug, not time after reaching an effective dose - we couldn't cleanly isolate the latter.

The dose-vs-time insight

Dose and time-on-drug are normally entangled because everyone titrates. Trying to pull them apart, here's what held up:

• Onset timing is NOT dose-dependent - this surprised me. I expected the fast responders to be the ones who started high. They weren't. Fast responders (felt it within 2 weeks) and slow ones (2 months) had basically the same average dose at onset (6mg), people sitting at 6mg showed up in both buckets, and starting straight at a high dose was no faster than crawling up (median onset 3 weeks either way; small n). How fast you respond looks individual, not dose-driven.
• But whether you respond at all does look dose-related - just not "more = better." One responder got nothing at 2mg and nothing at 6mg, but responded cleanly at 4mg. Others respond at just 1-2mg ("1mg twice a week, best I'd felt in 30 years"). It reads like a per-person window, not a straight line.
• Holding a sub-effective dose longer doesn't do anything. One person: 6mg for 8 months = "very minor"; bumped to 15mg = "worthwhile improvement." Another reached 6mg and held it \a year: "can't say it helped much." If a dose isn't working, waiting longer at it mostly didn't help - changing the dose did.
• Why titrate at all, then? Tolerability and crash-risk. People who hit side effects, dropped back, and re-approached could later tolerate the same target dose. And bad reactions can trigger PEM, then sometimes a lasting baseline drop. So titration is just risk mitigation, not a requirement for efficacy.

WHAT IMPROVED (for responders)

Symptom	% of responders
General / overall function (no specific symptom named)	42%
Energy / fatigue	30%
PEM	24%
Brain fog	18%
Inflammation / immune	12%
Pain	10%
POTS / dysautonomia	8%
Mood / anxiety	6%
Gut / IBS	6%
Sleep	4%

SIDE EFFECTS (% of everyone who took it)

Side effect	%
Flu-like spell after a dose	9%
Tiredness in the days after a dose	7%
Mouth / canker sores	6%
High cholesterol / lipids	4%
Headache	4%
Infections	3%
GI / diarrhea	2%
Nausea	2%
Rash / skin	2%
Insomnia	2%
Anxiety	1%

The worse-reaction profile

The 19% who worsened tended to do so quickly (hours to days) and even at low doses (1-2mg) - adverse reactions don't track dose, they hit even at the bottom of the range. Most common: flu-like malaise for a few days post-dose, symptom amplification, and a few true allergic reactions.

Caveats

• About half of responders were on other concurrent treatments (NAD infusions, IVIG, LDN, major diet changes, supplement stacks). Attribution to rapamycin alone is shaky for those.
• This is self-reported, uncontrolled, and selection-biased - people who improve post more, and our conditions naturally fluctuate, so some of these "responses" are probably noise rather than the drug.
• The LLM classification is approximate - I didn't hand-verify every anecdote, and the dose/onset splits run on small subsets, so treat the rankings as more reliable than the exact numbers.

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

I scraped the full history of 11 LC/ME subs via the free Arctic Shift API for Reddit, then loaded the 213K posts + 1.7 million comments into a SQLite database. I then ran all 413 first-person rapamycin candidate anecdotes through a small LLM (Claude Haiku) with a structured prompt, then, using my curiosity, explored it further.

Summary

Of 264 people who personally took rapamycin and described an outcome, 42% reported at least partial benefit, 12% got worse, and the benefit is mostly PEM-specific, not a baseline cure. Onset is bimodal - a big chunk feel it within a week, another cluster around 2 months - but it doesn't track dose (more below).

264 people confirmed taking rapamycin themselves. Outcomes:

Outcome	n	% of takers
Effective (clear)	29	11%
Partial (real but limited)	81	31%
No effect	35	13%
Worse	32	12%
Too early to tell	56	21%
Unclear	31	12%

Onset

Of 45 responders who gave a specific time to first noticing anything (measured from their first dose, so it bakes in titration time):

Time to first effect	n
0-7 days	12
8-21 days	6
3-6 weeks	4
~6 weeks-2 months	7
>2 months	16

About 40% felt something within 3 weeks, and a dozen felt it within a week - several on the very first dose. The large ">2 months" tail is real but disproportionately confounded (see below) or vague. Note this is time from starting the drug, not time after reaching an effective dose - I couldn't cleanly isolate the latter.

The dose-vs-time insight

Dose and time-on-drug are normally entangled because everyone titrates. Trying to pull them apart, here's what held up - and what didn't:

• Onset timing is NOT dose-dependent - this surprised me. I expected the fast responders to be the ones who started high. They weren't. Fast responders (felt it within ~2 weeks) and slow ones (~2 months) had basically the same average dose at onset (~6mg), people sitting at 6mg showed up in both buckets, and starting straight at a high dose was no faster than crawling up (median onset ~3 weeks either way; small n). How fast you respond looks individual, not dose-driven.
• But whether you respond at all does look dose-related - just not "more = better." One responder got nothing at 2mg and nothing at 6mg, but responded cleanly at 4mg. Others respond at just 1-2mg ("1mg twice a week, best I'd felt in 30 years"). It reads like a per-person window, not a straight line.
• Holding a sub-effective dose longer doesn't do anything. One person: 6mg for 8 months = "very minor"; bumped to 15mg = "worthwhile improvement." Another reached 6mg and held it ~a year: "can't say it helped much." If a dose isn't working, waiting longer at it mostly didn't help - changing the dose did.
• Why titrate at all, then? Tolerability and crash-risk. People who hit side effects, dropped back, and re-approached could later tolerate the same target dose. And bad reactions can trigger PEM, then sometimes a lasting baseline drop. So titration is just risk mitigation, not a requirement for efficacy.

WHAT IMPROVED (among responders)

Symptom	% of responders
PEM	59%
Fatigue	52%
Energy	41%
Brain fog	32%
Baseline / overall function	30%
POTS / dysautonomia	16%
Mood / anxiety	9%
Pain	9%
Exercise tolerance	7%
Sleep	7%
Inflammation	7%
Gut / IBS	5%

SIDE EFFECTS (% of everyone who took it)

Side effect	%
Tiredness in the days after a dose	19%
Mouth / canker sores	10%
Headache	7%
Insomnia	6%
High cholesterol / lipids	5%
GI / diarrhea	4%
Nausea	4%
Infections	3%
Flu-like malaise	3%
Rash / skin	3%
Anxiety	2%
Sore throat	2%
Hair loss	<1%

The worse-reaction profile

The 12% who worsened tended to do so quickly (hours to days) and even at low doses (1-2mg) - adverse reactions don't track dose, they hit even at the bottom of the range. Most common: flu-like malaise for a few days post-dose, symptom amplification, and a few true allergic reactions.

Caveats

• 46% of responders were on other concurrent treatments (NAD infusions, IVIG, LDN, major diet changes, supplement stacks). Attribution to rapamycin alone is shaky for those.
• This is self-reported, uncontrolled, and selection-biased - people who improve post more, and our conditions naturally fluctuate, so some of these "responses" are probably noise rather than the drug.
• Side-effect numbers are floors, not true incidence - people only mention a side effect when they had one, so the real rates are higher.
• The LLM classification is approximate - I didn't hand-verify all 400+ anecdotes, and the dose/onset splits run on small subsets, so treat the rankings as more reliable than the exact numbers.

If you've used orexin antagonists (Quviviq/daridorexant, Belsomra/suvorexant, Dayvigo/lemborexant, vornorexant)

Did you experience a loss of effect over time?

View Poll

We posted here last month announcing the Treatment Experiences Survey project, a patient-led project that aims to provide the community with critical data about experimental treatments that still don't have clinical evidence.

Many of you formed the 120-respondent pool for our first survey on GLP-1s, and we're excited to announce the results!

The response to these drugs, as expected, was extreme - while a promising 53% reported improvement, 28% worsened, some remaining below their baseline long after their last dose.

Other findings:

(note here that most subgroup analyses were not statistically significant due to small sample sizes, so please take these with a grain of salt)

• GLP-1s take effect fast. Responders noticed improvement within days, some on the first day! On the other hand, patients who felt nothing by 4–6 weeks almost universally ended up as non-responders.
• POTS/dysautonomia patients fared worse than average. This is consistent with GLP-1s known effects on the autonomic nervous system.
• Tirzepatide had a higher proportion of "very much improved" patients. Possibly consistent with the stronger anti-inflammatory effects of dual GIP/GLP-1 agonism.
• Brain fog was the most commonly improved symptom (44%), followed by fatigue (37%) and exercise tolerance (27%).
• Severe (bedbound) patients had the worst results: only 35% improved while 40% worsened, nearly double the overall worsening rate.
• Insomnia in the first few days was an early warning sign for patients who eventually worsened.

Full results, charts, and the anonymized dataset are all at the link above.

Happy to answer questions below, and we're also looking for suggestions on the next treatment to survey!

I like to buy bagels a dozen at a time, sliced, pop them in the freezer, and eat a bagel half with cream cheese each morning.

I've been doing this with my go-to, Tompkins Square Bagels, but would like to perhaps expand to diversify my taste (I'm in LES).

Any recommendations? I'm not sure if some shops make bagels that would freeze better than others. I love Pop Up Bagels, for example, but they're meant to be eaten fresh.