I hate seeing people with chronic illness not getting their life back like I did. One part of that is unnecessary and fixable: the low quality of healthcare right now (even among many chronic illness specialists). So let’s talk about why that’s happening and what we can do to push for quality healthcare.
It would be great if doctors put patients first. Unfortunately, some things get in the way…
HCPs will make more money if they gaslight patients into writing off negative reactions as a Herx or detox reaction. Then they can claim that they are “experts” who are helping their patients “recover”.
Because so many healthcare practitioners are doing this, it’s hard to make a living unless you play games like everybody else.
A lot of doctors want to do a certain type of medicine that makes them look good, such as top-down theory driven medicine. They latch onto a theory about what causes long haul (e.g. spike protein, microclots, cytokines, etc.). It sounds good. It makes them look smart. But patients are quickly realizing that it doesn’t work. Only around 7% of patients like myself are reaching the level of being mostly recovered (and most of it falls outside of the current popular theories). Doctors need to track patient outcomes instead of pretending like their patient got a lot better. They need to get evidence from their own patients and/or outside sources of aggregated patient data (e.g. survey data, VIGIaccess, etc.).
While healthcare practitioners have extensive training… very little of it is useful for treating long haul. They lack basic training in things like ME/CFS, pacing strategies used for ME/CFS, dysautonomia, diet, the actual safety of psych drugs, the actual safety of medical tests, etc. Who wants to admit that they don’t actually know what they’re doing?
Obviously you shouldn’t give vaccines to somebody who is vaccine injured. Yet so many of the licensing colleges are pushing this crap. The medical establishment pushes this crap onto patients. There are many scientific papers being written where the authors are pressured into saying that it’s a good idea to give COVID vaccines to those injured by them.
For example, Jara and colleagues recommend COVID vaccination to autoimmune patients even though their paper talks about autoimmune patients reacting to COVID vaccinations. But they say that it’s ok because the side effects are easy peasy to treat…
Fortunately, most of these autoimmune syndromes are easily controlled with steroids and other immunomodulatory medications and are short-lived.
This kind of stuff happens in the medical freedom movement and vax injury advocacy space too. It’s just that not a lot of people talk about it publicly. While this information is not widely distributed right now, I would urge you to be skeptical about the medical freedom movement and the media outlets that cover it.
There have only been a few randomized controlled trials (RCTs) that are relevant to treating chronic illness. But all of the best evidence is being ignored.
For an overview of the RCTs, see this video or its accompanying slides. HBOT is the only treatment with a randomized controlled trial supporting its use. It should be a first-line therapy. Yet I am the only person who puts it as a first-line therapy on a treatment protocol. This is embarrassing because I should not be the only person doing this. Other groups have read the literature and they ignore the obvious.
There are also people who don’t know about the HBOT RCT because they haven’t put in enough work.
Survey data and patient anecdotes are showing that people react badly to good treatments like HBOT and the supermarket food black seed oil (from nigella sativa). I mention it in all of these videos:
- A data-driven approach to Long COVID and COVID vaccine injury treatment (November 2022)
- What worked for 27 people who recovered - Feb 2023
- Patient Experiences Protocol (Dec 2022)
Very few people are talking about this. Many doctors don’t want to recognize it because it goes against how they do things.
Psych drugs can have devastating side effects like suicide and PSSD - see Psych Drugs – Sick and Abandoned. This is really inconvenient information for doctors who have been taught to prescribe psych drugs without proper training on recognizing their side effects and how to safely get patients off those drugs (e.g. slow tapering). These drugs are currently widely used in vax injured patients for pain, sleep issues, and for psych issues.
A lot of doctors ignore this data because it’s not the style of medicine that they’re into.
We can push healthcare practitioners to provide a higher level of care. Why isn’t HBOT a first-line treatment? We should be asking that question! Why should we take doctors seriously if they don’t follow the science?
The obvious problem with that is that we will be waiting around for others to get their act together. For people who are suffering, that is not good enough. There are people who need help NOW.
So let’s talk about helping patients now and advocacy work that could help. I’ve put up a lot of information on how to get access to healthcare.
- The start here guide explains how to use the directory of doctors and how to spot the better doctors. See Vaccine Injury Resources for Patients – Sick and Abandoned
- The Dallas Buyers Club video explains how to get access to medications. See Dallas Buyers Club - How To Get Access To Healthcare
The do-it-yourself route is far from perfect. Pharmacists could really help you manage drug interactions. However, they usually aren’t involved in the do-it-yourself route because there is no easy, convenient way to get a pharmacist to oversee your drug and supplement regimen. There is definitely room for improvement. But we make do with what we have and try to make the best of it. All of this stuff is a work in progress. Let’s work together to raise the bar when it comes to the medical care that chronic illness patients receive.
If you are able to, please help out by contributing your data to the latest survey.