Deeper dive topics
This section is for those of you who like nuance and the bitter taste of truth. You don’t have to read this section. To be honest, most of it is depressing.
Chronic illness surveys mostly don’t measure health outcomes / Any good data is mixed in with bad data
Chronic illness surveys mostly measure the unintuitive ways that people fill out surveys. We’d like surveys to measure health outcomes. Unfortunately, they mostly measure other things. This is partly because the effect of treatment (if it exists) is very weak.
For example, when survey design is not great, the survey participants will basically fill out 2 different surveys. The resulting data is mashed together and the findings will be erroneous. That is how the PLRC group reported a diarrhea rate of 59.7% while Kenny and colleagues reported a rate of 2.6%. We’re interested in medically unusual diarrhea and not the normal kind of diarrhea that everybody gets once in a while. The PLRC group accidentally measured normal diarrhea- which is why they started telling people that diarrhea is one of the most common Long COVID symptoms.
Apparently none of the peer reviewers pointed out that the PLRC methodology was problematic. Despite this, their survey paper has thousands of citations . This is why I don’t trust the peer review process or the scientific literature.
I go into more detail on that below:
The biggest issue is how patients report/misreport their outcomes.
Some of the RCTs have found that the control group getting no treatment ‘improved’ over the course of the clinical trial. This would appear to be a ‘placebo’ effect. (I personally think that people are misreporting their outcomes and that it’s something other than a placebo effect. Whatever.) There is something going on that causes people to report improved health even though they did not receive a treatment that could improve their health.
One recovered person in my survey data said that Hope Biosciences stem cells helped them the most. The issue is that we have randomized controlled trial data on those HopeBio stem cells. Unfortunately that RCT failed. So we know that the survey data in that case is erroneous- the survey data suggests that it’s an effective treatment when that isn’t actually the case.
The reason why medicine and The Science™ don’t work for chronic illness
It’s because it’s not medicine and not science. The underlying problem is people. A few people are charlatans and make stuff up. Those are the people who rise to the top. They want attention and they will make stuff up to get it. Some of them don’t do it for the money- they just want some specific kind of attention.
There are many ways of manipulating data to generate bogus science. For example, you can ignore your own data on microclots and mislead patients into thinking that they are the cause of their Long COVID or postvax symptoms. Their data clearly shows that some normal healthy people have abnormal microclotting and that some chronic illness patients don’t.
And here’s why you shouldn’t rely on the peer review process to weed out bad science:
This picture of a rat with giant balls got past peer review. It’slevels of embarrassing.
Patients constantly get scammed
You can look at the Youtube channel and Twitter/X account of PhysicsGirl, who has 3.5M subscribers. In early videos of her battle with Long COVID, her husband/caregiver talks optimistically about her recovery. Clearly he got scammed by bad information because PhysicsGirl still hasn’t returned to work. I don’t like it when really sick people get scammed.
Safety is a blind spot
For political reasons, the FDA and CDC want somewhat unsafe drugs to hit the market. Not too dangerous but not too safe. Why? They want the power to gatekeep what gets pulled from the market. Then they can get paid to not pull drugs from the market.
During the clinical trials for the HPV vaccine and the COVID vaccines, patients suffered serious side effects. Some of those patients have gone public to dispute the safety data reported for those trials. After drugs hit the market, the problems continue.
The Unites States’ VAERS system is fairly well-designed when it comes to monitoring safety issues, usually after the clinical trials end. The problem is the people running it. Their agenda is to find safety problems so that they can hide them. We know this because the VAERS people will process patient reports and add them to a public database. They will also remove reports from that database after they ‘investigate’ and come up with some BS reason to ignore safety information. Because there is a website that archives the public database, we can see what reports were removed.
- Here’s the deleted record for Olivia Teseniar. She was injured in the Moderna clinical trial.
- FOIA requests found that the CDC was actively discussing the case of a 2-year old Alaskan who died hours after vaccination. They ‘found’ reasons to deem the report not credible. That baby’s VAERS number 1887456 was deleted from the public database. Tom Shimabukuro knew about the 2-year old while he told the public something else and downplayed vaccine safety issues.
Early on in the vaccine roll-out, the VAERS people quickly figured out that vaccine injury was a multi-symptom syndrome. I know this because some vaccine injured people were talking to Peter Marks and others at the CDC. Recordings of those conversations exist. The injured were also talking to them about MIS or multi-system inflammatory syndrome. They were asking the CDC to officially recognize it as a potential side effect of the vaccine. (What actually happened is that the CDC was actively looking for MIS in vaccinated patients due to what happened with the vaccines for SARS1 and pan-coronavirus vaccines. After the COVID vaccines (for SARS2) hit the market, the CDC quickly discovered that the COVID vaccines would cause MIS itself. They initially buried that information.)
Unsafe practices are baked into the medical systems in Western countries. We should not trust the scientific literature, the drug approval system, and the people at the letter agencies.
Mainstream doctors are trained to take the medical consensus as gospel. If everyone else is prescribing something, then they will follow the herd. That’s why they used to prescribe amphetamines for weight loss (decades before Ozempic). Amphetamines are a street drug.
As far as chronic illness goes, we don’t have any entity tracking treatment outcomes in chronic illness patients, who seem to behave differently than healthy patients (e.g. long haulers report negative experiences with acupuncture). My surveys won’t capture data from dead people like Heidi Ferrer or Eric Hauser, both of whom apparently tried a lot of risky treatments before they died. Regarding Heidi Ferrer, she tried a number of interventions like COVID vaccination, ivermectin, Ambien (zolpidem), and whatever Patterson/Yogendra recommended. It’s not clear to me if a treatment killed her, although COVID vaccination started the chain of events that led to her death (that is my interpretation of her eulogy).
The bottom line is that we don’t have good safety information. That’s why we should proceed cautiously.
I’ve been holding back
There’s a lot of bad behaviour out there from researchers, doctors (both mainstream and alternative), support group moderators, patients, the medical freedom movement, advocates, etc. I really wish I could tell you about things like the Bruce Patterson MD / IncellDx / SynLabs / Ria Heslop controversy. But then I would get sued. (Patterson is why many patients paid for his tests and tried statins/maraviroc as a treatment.)
I’m frustrated because I can’t properly warn you about issues that can be dangerous to your physical or mental health. But we can look at it like this: if Patterson is 100% right, then it would reflect poorly on Ria Heslop, who advocated for Long COVID and postvax patients. If Ria is in the right, then it would reflect poorly on Patterson, who is a researcher.
My overall message is this: don’t trust people. And don’t trust anything that you can’t verify.
There are serious problems with how doctors are educated
My research was used to train doctors. Because I don’t want to get sued, I won’t get into the specifics.
But we can talk about big pharma. Big pharma pays for the miseducation of doctors all the time. They spend a lot of money marketing their drugs- and it works. They can use their money to change the ‘standard of care’ (standard practice). The maker of gabapentin paid a $430M settlement because they used illegal tactics to get doctors to prescribe gabapentin “off label” for unapproved uses. Almost all gabapentin usage nowadays is for unapproved uses.
It’s not that doctors don’t know what they’re doing. It’s that some doctors think they know what they’re doing when they actually don’t. That’s the kind of doctor that can potentially be very dangerous. And because many treatments require a prescription, you may be exposed to these dangerous people.
One of the dangerous practices going on in the alternative medical system is that doctors will try to explain away your negative treatment-related symptoms as ‘detox’ or a ‘Herx’ (Herxheimer) reaction. That behaviour may cause you to waste time while experiencing unnecessary harm.
The bitter taste of truth
I’m sorry that the truth is what it is. I collected survey data because I ultimately want to see people get their lives back. However, peddling untruths or false hope won’t help. I’m not going to do that. Sick people deserve better than that.
I’m not a doom and gloom guy. I’m open to different approaches to recovery.
- If you want access to unapproved experimental drugs, I have a video on the Dallas Buyers Club approach.
- If you want to read the scientific literature, I’ve compiled a list of RCTs over at Long Haul Wiki.
- If you’re into recovery stories, check out the links here.
With experience, you will discover that it is easy to underestimate the dangers and to overestimate the potential benefit. That trap exists. I’m not convinced that you will recover faster if you repeatedly learn things the hard way.
In practice, you can simply wait and let other people try all of the craziest things out there. Some patients had BC007 synthesized for them so that they could get it without joining the clinical trial. Why be a guinea pig when other people will do it for you? Let them put their bodies on the line so you don’t have to.
Biased information and why the truth doesn’t get out
You often won’t know about the biases in the information that you get. There are support groups that will censor my work simply because I am the messenger. Criticism of the iTeracare wand (sold via multi level marketing) led to the silencing of myself and others. Many Long COVID support groups will discriminate against postvax (vaccine injured) patients. In many cases they are removed from the group and silenced that way.
I believe that many Long COVID support groups will not entertain a discussion about what killed Heidi Ferrer.
Social media algorithms are a problem
“Hope porn” does better on social media than accurate information. People want simple, easy-to-understand solutions for their health problems. Posts that “give” people what they want will get pushed by social media algorithms because it seems to be compelling content. Unfortunately it doesn’t work.
I’ve been trying to educate people about questionable information on social media like in the post below.
But it just doesn’t get attention. Highly accurate technical information won’t help people if nobody reads it. Surveys don’t get filled out if people don’t learn about them. So nowadays I’m guilty of engaging titles clickbait. I think I’m ok at it- my most popular post on Reddit has 5 million views.
It’s still problematic because it gets in the way of patients’ health. Unreliable information will get pushed more than accurate information.
The low-risk and no-risk approach
If you don’t want to take risk, then see this post for information on safe treatments that alleviate symptoms.
Microbes would elegantly explain chronic illness
Patients have an infection of some sort but we don’t know what it is.
Take pneumonia for example, which is often caused by a bacteria called Streptococcus pneumoniae. This bacteria commonly lives in healthy people without problems. However, for reasons that we don’t yet fully understand, they cause problems in some people and are therefore pathogenic.
Other microbes such as fungi and viruses also have this property- they live in healthy people without problems but sometimes turn pathogenic. The microbes responsible for Long COVID and post-vax (vaccine injury) likely resided in the body well before illness began. Everybody has microbes living inside them and typically they only cause minor problems. For example, fasciculations (involuntary rapid muscle twitches that are too weak to move a limb) existed before Long COVID and post-vax as there has been a condition called Benign Fasciculation Syndrome. Chronic illness sufferers just happen to have a long list of problems (of varying severity) while healthy people have a very short list of low-impact problems.
Sufferers don’t have the exact same combination of microbes so that’s why their problems are different.
Wrapping it up
I’ve tried my best to outline the best that we can do right now. Based on that, you can make realistic plans and avoid unnecessary harm to yourself. I hope it helps. 
TLDR: Go to the supermarket. See the section “What I would actually do myself”.