Has anybody tried ___? Here's how you can get answers to that question fast

I have a data dump of survey data here:

  1. Patient Experiences Survey: longhaulwiki.com/pes/
  2. Treatment Outcomes Survey: longhaulwiki.com/treatment-outcomes/ ← While this data set is older, it has more data on IVIG and the demographics are quite different.

Use the search feature on the name of the treatment that you want to find data for.

  • Desktops: Hit Crtl + F (⌘+F) in your browser.
  • Mobile: Tap and hold on your web browser app (while in the app). The search function will have a name like “Find Selection”.

If you keep hitting next, eventually you’ll find a section where the title has various different names for the same treatment.

The phrase in italics is what you should be searching for. This will let you find all of the data and analyses available for that treatment.

The bars for worsening indicate people who reported bad experiences with that particular treatment. The data on worsening can help you get a feel for the risk of a treatment. Unfortunately there is often a disconnect between what clinicians/patients say and what people are reporting on the survey.

Comparisons with ‘similar’ treatments

Sometimes there is a section where the treatment is grouped with other similar treatments. This lets you compare IVIG to somewhat similar treatments. You can see:

  • How popular these treatments are
  • How ‘risky’ they are (how often people report bad experiences)
    • -3 points for significant worsening, -1 point for mild worsening, 0 points for everything else)
  • The score for that treatment.
    • 3 for significant improvement, 1 for mild improvement, 0 for about the same, -1 for mild worsening, -3 for significant worsening, 0 for effect unclear.

In the chart above, you can see that maybe you don’t want to waste money on IV ozone or IV vitamins until you try high pressure (>1.5 ATA) HBOT first. Of expensive treatments out there, IV ozone may not be the best use of your money unless you’ve failed other treatments.

Survey data can be unreliable

Sometimes people interpret questions in weird ways. This can cause a small portion of the surveyees to answer a completely different ‘question’ than everybody else. That leads to bad data.

There are also biases in the way people report the outcome of a treatment.

The short story is that survey data can be unreliable. Data from (honest) randomized controlled trials (RCTs) is more reliable but they take money to pull off. We have very little RCT data unfortunately.

What survey data is good for

If something has more than 10 results in the survey data, then it’s probably not a magic cure. Nothing on the survey was a magic cure. That’s just how it is. Of course, not all treatments were surveyed.

In general, you’ll see that a few people will report really positive results for every treatment. That’s why “everything works” when you go to the support groups.

What helped people recover

In the Patient Experiences Survey data dump (longhaulwiki.com/pes/), there is a section titled ’ All 235 treatments surveyed’.

The third column shows the percentage of people who recovered AND reported significant improvement from the treatment. Anything higher 1.2% suggests that the effect may be non-random and that the treatment may have medically helped (as opposed to people answering the survey in weird ways or believing that the treatment works when it doesn’t).

Count shows the number of ‘recoveries’. A count of 1 is unreliable because the sample size is very small.

Another survey analysis

Another way of looking at the same survey data can be found here:

What was the treatment that helped the recovered the most?

See this post for a list of those treatments.

  • Fasting (different forms) - 6
  • Ivermectin - 3
  • NAC - 3
    • Note that about half of the people on the survey tried NAC. After adjusting for popularity, it may not be as good as it first appears (e.g. 1% success rate).
  • Exercise - 2
    • Exercise was even more popular than NAC, so interpret with caution. Most people respond negatively to exercise, even if it is light.
  • Nattokinase - 2
  • HBOT - 2
  • Time - 4, no answer/treatment - another 4

Score has limitations

I wouldn’t put too much weight on the average score. It’s heavily affected by how people fill out surveys. It is possible/likely that survey-answering biases have a bigger impact on the data than how good a treatment is.

The data is more reliable for negative experiences… there tends to be a lot less bias there. If a high percentage of people are reporting negative experiences then the treatment has some risk to it.

You can search Reddit, Facebook, Phoenix Rising, etc.

There are various chronic illness support groups on social media. Searching these groups can be useful for treatments that aren’t on the survey, e.g. plasma donation.

The Phoenix Rising forum for ME/CFS patients is another place too look for information: https://phoenixrising.me/

If you want to know about highly experimental treatments like GS-44 and BC007, patients are generating anecdotes on those treatments. However, there currently isn’t an easy way to find those anecdotes. But hang out on Discord and you’ll eventually figure out how to get that information. Join these Discords:

  1. Joshua Leisk’s discord: BornFree.life
  2. Discord

Treatments for specific symptoms

There is data available for:

  • Pain
  • Food intolerances or allergies
  • Severe depression
  • Sleep issues
  • Brain fog, memory problems, or cognitive difficulties
  • POTS or feeling faint when you go from lying down to standing

See the video (A data-driven approach to Long COVID and COVID vaccine injury treatment (November 2022)) and/or the slides in the video description. Skip ahead to the targeted treatments section if necessary.

I hope this helps

Now you can get quick answers to most of your questions. People have tried a lot of things and the results are usually mixed, with good experiences for some and bad experiences for others.

235 treatments surveyed… here are some of the top treatments

The data dump for the Patient Experiences Survey is now available! Here are a few of the top treatments that have helped people recover:

  1. Cat’s claw - This plant extract has been used in traditional medicine. Only 20/459 (4.357%) tried this, which may explain why people aren’t talking about this.
  2. HBOT - See this primer for safety info on HBOT and other details.
  3. Fasting (usually for more than 48 hours) - Primer here.
  4. Nattokinase - Often used with serrapeptase, presumably as part of an anticoag approach.

Only about 8% of chronic illness patients are becoming mostly recovered. Potential reasons are:

  • Most people aren’t trying the top treatments. HBOT is the most proven Long COVID treatment but patients and practitioners aren’t talking about it.
  • Many treatments like HBOT seem to make some patients worse. It’s unclear if harm is reducing the likelihood of recovery. Unfortunately this is not a popular discussion topic. Starting with low doses and discontinuing early would likely reduce harm (and possibly aid in recovery).
  • Response rates are very low. To find the signal, it takes large numbers AND iterations upon survey design. The iterations are needed because gathering reliable data is difficult.
    → Historically, patients have tried treatments without reliable data as to whether or not the treatments are a good idea. It should not be surprising that few patients are recovering.

The good news is that some people are recovering. It’s only a matter of time before we figure out how it happened. That is what my survey research tries to find out.

Implementing the treatments

You can easily order the supplements through iHerb (see this shopping list to make life easier for you), Amazon, other supplement retailers, etc.

How to use the data dump + what it’s for

Go to longhaulwiki.com/pes/

Do a Crtl+F search for the treatment in question. Keep going until you find the various risk score tables or the chart shown below.

The risk scores will give you a rough idea about how risky a treatment is. Acupuncture for example is surprisingly risky :fearful: . People usually don’t report significant worsening for treatments.

The second way to use it is to see how many people have tried it. If a lot of people have tried it and it’s on the survey, then it probably isn’t the magic cure that people are looking for. Anybody claiming 70% recovery or higher for a treatment is probably lying, dangerously incompetent, or intentionally deluding themselves.

See the first post in this thread for most detailed instructions on using the data dumps.

Other treatments

There are more treatments- but I will discuss the other ones in a future video because many of them are prescription drugs (e.g. colchicine, statins, ivermectin).

Surveys collect some unreliable data

Some of the treatments discussed here may turn out to be worthless. In an ideal world, we would have money to run controlled trials on the most promising treatments. Don’t take the survey data as gospel when it comes to what works.