Recovery stories mega-compilation - 180+ stories, 23+ RCTs

[glenn_chan]

Hi Adam8, sorry to hear about developing all these problems at a relatively young age.

I generally try to shy away from medical advice. We can get into a lot of trouble if we think we know something when we actually don’t. (That’s a huge problem with how doctors practice medicine- a lot of practices are dangerously misguided. There are also financial incentives to exploit patients and to validate them by giving them diagnoses based on vibes and questionable tests that come back positive.)

There are some safe treatments where you shouldn’t get into too much trouble.

• Pacing strategies
• Low histamine diet

Those are among the treatments rated as ‘helping the most’ in recovered people (Patient Experiences Survey dataset of ~1337 people).

Pet theory

A pet theory of mine is that some people may have recovered simply because their diet changed over time. More specifically, microbes are the cause of chronic illness (i.e. Long COVID, ME/CFS) and this is a relatively safe way of fighting them.

Treatment idea: Antimicrobials naturally found in food could be how people recover naturally from long haul

The idea is that plants contain antimicrobial chemicals. If you try enough plants by eating flavorful foods, then you may eventually stumble across something that leads to recovery. I’ll discuss my experiences and some theory. How it works We know that chemical warfare is an effective way of dealing with bacterial, parasitic, and fungal infections. Antibiotics and antifungal chemicals are the most common way of fighting infections. Doctors no longer use malaria to fight syphilis bacteria (…

Less safe ways of fighting microbes:

Ivermectin shows up a lot in the survey data. However, this may be due to the politicization of the drug (from pro-ivermectin missionaries). It’s on the lower risk side of things, but not risk-free. The medical freedom movement exaggerates its safety (again, politics).

There are a number of low-risk antifungal drugs. Efficacy at fighting chronic illness is unclear.

There are antivirals out there but they often aren’t that good. Our drugs for fighting viruses aren’t that good except for certain viruses (HIV, HepC).

Antibiotics are very risky for some reason- I wouldn’t go there unless you exhaust other options first and are really, really desperate and willing to do questionable things.

Most theories about chronic illness ‘work’ when you ask patients (*the theories are probably wrong)

See this post for a deeper dive into that. What’s probably going on is that the patients don’t know what works. Surveys may be mainly measuring their beliefs, how they see the world, politics in chronic illness social media circles, etc.

POTS

Bisaccia and colleagues wrote a 2021 guide on treating POTS in PASC (‘long COVID’) patients.

Data on safe, first-line treatments for POTS

Bisaccia and colleagues wrote a guide for treating dysautonomia in Long COVID patients. Out of the safe first-line therapies that they suggested, I gathered survey data on 4 of those treatments. Those treatments look like safe, very reasonable choices for dealing with POTS. [image] *The data for increased intake of water and salt may be a little screwy because people without dysautonomia probably answered that question. But other than that, the safety looks good and the response leans towa…

First-line treatments for POTS (Bisaccia and colleagues)[edit] - List of doctors...

I would be careful with exercise, as exercise likely causes more harm than good if you look at the RCT data and look at the elevated dropout rate in the exercise group.

Getting disability (in the US?)

I don’t know too much about qualifying for disability. For ME/CFS, there’s a CPET test that some people use to help them qualify.

Presentation on PEM: Underlying causes, diagnosis

I found a presentation from a clinic called the Bateman Horne Center that appears to specialize in ME/CFS and Long Covid. Here is the link: https://batemanhornecenter.org/wp-content/uploads/filebase/providers/PEM-Lecture-Slides-ECHO-v4-5_17_2022.pdf Some things of interest that are noted in this presentation: 2 day CPET testing is a reliable, reproducible, and accurate measure of PEM. ME/CFS patients consistently differ from a healthy control group in that they cannot replicate their day 1 ou…

Additional thoughts on recovery

See this post of mine from 2025:

How to recover from Long COVID and post vax (short summary version)

[image] I’ve surveyed over 525 people. Here’s how most people recovered: Fasting (usually for more than 48 hours) Treatments with anti-microbial properties - certain supplements, certain prescription drugs, and HBOT. Effective treatments are usually double-edged swords that will cause harm to some people. Currently, no testing exists that would help predict the outcome of any particular treatment. So, patients have to take a trial and error approach to figure out what helps and what caus…

CFS diagnosis

There are stringent diagnostic criteria such as the Canadian Consensus Criteria, International consensus criteria, CDC criteria, etc. See Systemic Exertion Intolerance Disease - MEpedia

If you got diagnosed based on vibes then… that could be a red flag.

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Sorry for not entirely answering your question. While some people do recover, it’s not clear how it’s happening. Most of the patient-reported information on recovery appears to be erroneous.