Only about 7% of patients are recovered... let's get that number higher

[glenn_chan]

So let’s start with some data… only about 7% of people are mostly recovered. Data on Long COVID and post vax patients below:

Video: What worked for 27 people who recovered - Feb 2023
See slide 4: https://longhaulwiki.com/resources/assets/What-worked-Feb-16-2023.pdf

So let’s recap some potential ways that we might get that number higher.

Disclamer: please keep in mind that this data is fully reliable. We don’t have amazing research to base our decisions on. So, please know that some of the stuff in this post is somewhat on the experimental side. However, some of it may be more reasonable than going through the conventional medical system. With that out of the way, let’s get into potential reasons why recovery rates are low

1 - HBOT is the most proven treatment

In case you missed it, HBOT is one of the few treatments where a RCT found a benefit.

In case you missed it, HBOT is the most proven treatment for Long COVID

[image] The most reliable scientific evidence comes from double-blind randomized controlled studies. There have only been a handful of those for Long COVID or similar conditions: Hyperbaric oxygen therapy (HBOT) Leronlimab, a CCR antagonist AXA1125 Phyto-V (RCT link) IVIG for post-polio syndrome (and other conditions), which may be unrelated to Long COVID Rituximab for ME/CFS, which should be more like Long COVID than post-polio syndrome Links to the RCTs can be found at the List of docto…

2 - Most people aren’t trying the most effective treatments

Survey data showed the strong signal for 6 different treatments. Most people haven’t tried them.

• Ivermectin - only 23.7% tried this
• Black seed oil - 16.3% - in the oil form, which is a supermarket food
• HCQ - 6.9%
• Extended fasting - 5.3% (*One can argue that people gave up early, so here’s the data for 24-48 hour fasting - 10.7%)
• HBOT above 1.5ATA - 7.9% ← expensive, which limits accessibility
• Statins - 14.2%

3 - Higher dosages may be needed?

Nigella sativa oil / black seed oil only helped people recover when it was in the oil form but not capsules are as seed (which are usually taken at much lower dosages). Unfortunately, higher dosages also come with higher risk (e.g. black seed oil can interact with anesthesia used during surgery).

Higher doses may be a missing key to recovery for long haulers (*though it increases risk)

[image] Based on survey data (video | slides), we’re seeing that people seem to need higher doses to recover. Unfortunately, a lot of the current protocols recommend lower dosages rather than safe high dosages. They simply aren’t paying attention to patient experiences and the available data on this topic. Case study #1: Intermittent fasting is weak, longer fasts are needed The table below shows that roughly twice the people succeeded on longer >2 day fasts compared to 1-2 day fasts (24-48…

4 - Recognize that treatment can set you back???

This topic is very unclear at the moment. However, some anecdotes and other pieces of evidence suggest that treatment is causing long-lasting worsening in some patients. It may be possible that (A) starting with low dosages and (B) quitting early may minimize the chance of that happening. It’s usually the more prudent path to take when it comes to medical experimentation.

Microclots and triple anticoag- What you need to know

First of all, what you should know is that the ‘science’ from Pretorius, Kell, and their colleagues was not done in good faith. #1 Version 1 of their preprint claimed that all 24 of 24 patients got better on triple anticoag. Then version 2 of that preprint removes all of the clinical data. It calls for RCTs without mentioning any of the clinical data that they had. Given all of the LC and MECFS patients that tried triple anticoag, it seems highly likely that the 100% response rate was fabrica…

5 - Antimicrobials are worth trying???

A lot of people will fail the top treatments. For the people who just don’t respond to treatment, it’s possible (but far from proven) that other antimicrobials offer a shot at recovery.

The video below has some ideas on antimicrobials:

Patient Experiences Protocol (Dec 2022)

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Please contribute your data

We need to pool our experiences together so that we can get more data on what’s working and what’s not.

We really need to find more treatments because we know that the top treatments identified so far won’t work for many people. If you are able to, please send 5-10 minutes filling out the survey below:

Patient Experiences Survey | We will research our chronic illnesses if the government won’t do it!

I will be collecting data on what treatments are and aren’t working out. The survey is below and takes only 5-10 minutes: The pre-filled link above will help track patient demographics. This survey will help us with data on newer treatments like natural anticoag, spike protein detox, etc. The medical establishment may have abandoned us but we have each other. Let’s pool our data and start pushing for effective treatment. Thanks! [people_standing_together_conste…

The march ahead

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We are stronger than we think because there is strength in unity.
By pooling our data together, we can start figuring out the medical mysteries and we’ll be able to identify more treatments that can be useful tools in the fight against chronic illness.

We know that some people are recovering. With more data on what works and what doesn’t, we can really push towards real recovery and see more people get their lives back.