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

General
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There’s a lot of information on recovery out there. I will point out the strengths and weaknesses of that information so that you don’t get bamboozled by the misinformation out there. This post covers:

  • The scientific literature | 23 randomized controlled trials
  • Recovery stories | 180+ recovery stories
  • Patient surveys | an additional 87 recoveries
  • Highly experimental treatments

This information is current as of June 2026.

The scientific literature

Randomized controlled trials (RCTs) can produce the most reliable information as they can control for things like the placebo effect and reporting biases. I keep a compilation of these RCTs over at Long Haul Wiki. The first category / set of RCTs there are focused on the RCTs with positive results.

However, the problem with the scientific research field is that money creates incentives for researchers to release sexy results. Researchers will lose their jobs if they can’t pull in research funding. So, there are many questionable conclusions out there not supported by the researchers’ own data. Sometimes people label their study as “Long COVID” because LC became sexier than what they were originally studying. Of the 8 ‘successful’ RCTs listed, I only consider 1 of them to be credible. (You can make up your own opinion about the others.)

The most credible RCT is for HBOT, or hyperbaric oxygen. The Shamir medical center :israel: study (Zilberman-Itskovich, Shai Efrati et al.) found a statistically significant benefit, while the Karolinska University Hospital :sweden: study (Kjellberg et al.) did not. Unfortunately, the results are conflicting. My notes on both studies are here. The Swedish study didn’t entirely have a true control group as the control group received low pressure HBOT as their sham treatment.

Case studies

There are some case studies with hilarious claims. Microclot ‘missionaries’ put together a pre-print claiming that triple therapy led to 24 out of 24 patients recovering. Every. Single. Patient.

Patient surveys like the Patient Experiences Survey and the TREATME survey* indicate that many people tried triple therapy. The recovery rate isn’t close to 100%.
*Search for triple therapy in the TREATME supplemental excel spreadsheets.

I don’t find case studies to be that useful because of all the shenanigans in this space. Sometimes the patients in a study will actively dispute what the researchers are claiming in their published paper.

Patient surveys and recovery stories

In the Patient Experiences Survey, there was data on 87 recoveries out of 1173 people with severity data. That was turned into a list of almost 110 different treatments that were reported as helping the most. That list may be useful as treatments not on the list don’t have any successes among the 1173 people surveyed. This can help weed out the treatments that aren’t as compelling.

One of the issues with the patient survey data is that the ‘successful’ treatments were all over the place.

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Most of the popular Long COVID theories (e.g. taking antivirals to deal with SARS2 persistence) are represented on this list. It’s unlikely that all of the conflicting theories are all true at the same time.

An even bigger issue is that the patients simply may not know what helped them.

  • RCTs have been unable to ‘replicate’ what patients are rating highly. (*The mixed HBOT results are an exception.)
  • There is a bias towards rating treatments positively rather than negatively.
  • Patients have different styles when it comes to filling out surveys. Some people will rate almost every treatment highly.
  • The passage of time, which is not a real treatment, outperformed almost every other treatment.

Recovery stories

Summary: The treatments mentioned depend heavily on demographics. Popular treatments and hyped treatments will show up more in recovery stories; these vary from support group to support group. Groups have different politics surrounding the evils of GET+CBT, the ‘Trump’ drugs (ivermectin and HCQ), COVID vaccination, etc. etc.

Weaknesses: Recovery stories on forums, Reddit, Youtube, etc. may have unusual definitions of the word ‘recovery’. Somebody may see themselves as recovered even though they can’t go back to their old job. In the Patient Experiences Survey, patients were asked about their status based on 3 dimensions- ability to work, ability to walk, and suffering from symptoms. That moves everybody towards a more common definition of ‘recovery’ (able to walk and work, with minimal suffering from symptoms). Most recovery stories don’t have that rigour in defining recovery the same way.

Also be careful with brain retraining as some of them are financially motivated. For example, they may be paying to get onto a Youtube channel.

Where to find recovery stories

NIH’s longitudinal study

The NIH’s research program on Long COVID tracked patients over time. To briefly summarize: some people naturally recover over time. See profiles C and D below:

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Figure 3 from Long COVID trajectories in the prospectively followed RECOVER-Adult US cohort - PMC

Natural recovery seems to be happening to lucky people. We’re not really sure why though.

And now we start scraping the bottom of the barrel

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Highly experimental treatments

Here’s some basic information on how to get access to experimental healthcare.

Having done it myself (e.g. ex Soviet bloc antivirals), I would not recommend it. There’s no shortage of other patients willing to put their bodies on the line. They will try it so you don’t have to- just have a little patience.

The evidence based for experimental treatments is very sketchy. The people who are crazy enough to do this may be crazy in other ways.

Eureka Health

Noah Macca scraped posts from Reddit and Twitter to extract patient-reported experiences regarding treatment.

While the data is very interesting, it does suggest that there is a strong bias towards ‘everything works’.

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RCT and survey data suggests that the response rates are much, much lower than what people are reporting on social media. I personally believe that there’s a strong bias towards only posting positive results on social media. Partly, this is because you will get random attacks from people if you say negative things about a treatment. So a lot of people don’t bother.

What doctors are trying

Long Haul Wiki has a list of what doctors are trying. Scroll down to section 4 “Doctors treating” to see a list of those treatments.

I would be extremely cautious with the list because the recommendations are often not guided by any evidence. It’s possible that some of the people giving medical advice have had a scientific paper retracted because the paper was a scientific fraud. There are also cases where the doctor claims recovery while the patients publicly dispute that doctor’s claim.

I’m sorry for being jaded and cynical but I’ve seen too much outrageous behaviour. I’m sick and tired of patients being scammed with fake medicine, fake diagnoses (e.g. using vibes to diagnose every patient with chronic Lyme), and the business model of exploiting desperate people.

The dangerous allure of information on the Internet

I know that the Internet is an information superhighway where you can find the answers to your problems. However, I’m going to be responsible here and I’m not going to set a trap for you. The actual answers aren’t that great because there’s so much about medicine that we don’t know. However, it’s important that we don’t get ourselves into trouble. That’s why I try to explain the caveats to the recovery stories and supposed answers out there.

On a practical level, if you can figure out what level of risk you’re comfortable with, then you can filter out all of the crazy stuff that exceeds your threshold. That’ll help you sift through possible medical options.

I hope this helps! I am fortunate enough to have recovered and I hope more people get to that point. :mending_heart:

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Hey I´m looking for your help.
My history: 2 vaccines, 3 times covid infection, 6 antibiotics (vaxes started everything)

22 years old, I have severe PEM, extreme exhaustion, tough headaches forehead area, diagnosed POTS, diagnosed cfs

Please if you can, advice me anything that could help me. I tried many diets, many medications, nothings working. Currently housebound. No financial support at all. State denied me despite doctors advocating for me. What type of treatment would you start?

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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.

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.

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.

Additional thoughts on recovery

See this post of mine from 2025:

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.

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.

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Hey Glenn, thank you for helping.
I did try low histamine diet with h1h2&mcas stabilizer, also tried the pacing which was helpful a little bit.

If you would stumble on anything else that could help me, I will be happy, text me anytime.
Did you have experience on how environment can affect the patients? (dust, mold etc)

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The ME/CFS communities were briefly obsessed about mold as the cause of ME/CFS. In the documentary Unrest (watch it for free on Youtube), you can see Jenn Brea rent a trailer so that she could live in the desert mold-free. However, she gave up on that. Later, she tried surgery (following the mechanical basis theory), said that she was recovered even though she couldn’t work due to MCAS, and unfortunately regressed and scaled back how much she worked at her charity MEAction.

Historically, the ME/CFS communities have gone through treatment trends like low dose Abilify, Ampligen, etc. etc. There were scientific fads like the XMRV (which turned into a scandal), cytokines, etc.

I didn’t see mold among the recovered people in my survey; however, it probably wasn’t popular because there weren’t a lot of ME/CFS patients and it’s likely that very few people tried it (I probably surveyed people who aren’t old school ME/CFS patients).

As a treatment, it seems like it’s a bit on the expensive side in terms of how it disrupts your life.

Other chronic illnesses

When it comes to poorly-explained chronic health problems, there have been a broad range of explanations like chronic Lyme, MCAS, mechanical basis, Ehlers Danlos Syndrome, etc. I would point out that Multiple Chemical Sensitivity (MCS) and Chronic Inflammatory Response Syndrome (CIRS) have been a thing.

Thanks to the research into ME/CFS, Long COVID, and postvax, it’s now looking like those 3 conditions are heavily overlapping. They may be the same.

If we extend that further, it’s possible that chronic Lyme is also a label for Long COVID. The Patterson group published research looking at the cytokine differences between Lyme and LC. They said that the test can differentiate between Lyme and LC but… it’s possible that their data doesn’t actually support that claim. I’m not aware of research looking at whether Lyme and LC are similar.

My suspicion is that many of these conditions are actually the same thing. If the musician Ren is rapping about it, it’s probably the same thing.