So you’ve been reading down a rabbit hole and you have seen something that doesn’t make sense. You feel a quiver in your heart that feels like a cross between excitement and fear. Could all the people who already know stuff be Wrong™. Could eminent researchers in their field be working on a wrong model?
Maybe you have a disease or condition and you followed the directions of the doctors or experts exactly and found results opposite to the intended results. That’s when you started googling. You found an obscure blog written in 2005 by someone with the same problem. You find a few people proposing a different working mechanism and you are rapidly falling down the rabbit hole…
IF and that’s a big bold and underlined “if”, the experts are wrong… What is the shape of the world you would expect to see? What “evidence” would you need before you started getting excited, calling national newspapers and demanding your Nobel prize for groundbreaking research?
For consideration, what information on these layers of existence would matter:
Personal—you can’t always do experiments, but maybe there’s something available?
Anecdotal—you can’t just ask around, or can you? What counts as valid?
Research papers—you are probably not the only one, but you might have to dig to find the papers. What if you can find them? What if you can’t understand them?
Academics—locked up in their ivory towers, sometimes they do invent new working models. There’s a lot of global academic institutions, how many of them need to be muttering of discourse to matter as genuine evidence?
Medical—You might find a rogue doctor claiming to fix chronic fatigue with seawater but when is it time to start taking them seriously? (Warning: I haven’t even googled this to check if there is one person doing this)
Countercultural experts—There’s this one guy on Youtube that is yelling about it. When is it time to take him seriously?
Communities—okay there’s a Facebook, Reddit or obscure forum community forming of people with the same problem, but they aren’t very scientific about working out what is and isn’t working. When do they become legitimate sources?
Someone claims to have completely made the condition disappear using arbitrary methods. There’s challenge but there’s some evidence here?
Models—you ask many experts. They say you are wrong but can’t explain why in effective ways. They send you to papers that don’t quite prove what they are claiming. When you point that out, they get grumpy and communicate less.
Dissent
I’m interested in the nature of dissent, what it feels like, how to quantify it’s validity and how to integrate it better into the scientific process. Science MUST disagree with itself but it often rejects disagreement without taking it seriously.
What does valid dissent look like?
I believe I have found a perfect example where the “Medical Model is Wrong,” and I am currently working on a post about it. However, I am swamped with other tasks, I wonder if I will ever finish it.
In my case, I am highly confident that my model is correct, while the majority of the medical community is wrong. Using your bullet points:
1.Personal: I have personally experienced this disease and know that the standard treatments do not work.
2.Anecdotal: I am aware of numerous cases where the conventional treatment has failed. In fact, I am not aware of any cases where it has been successful.
3.Research papers: I came across a research paper from 2022 that shares the same opinion as mine.
4.Academics: Working in academia, I am well aware of its limitations. In this specific case, there is a considerable amount of inertia and a lack of communication between different subfields, as accurately described in the book “Inadequate Equilibria” by EY.
5.Medical: Most doctors hold the same opinion because they are influenced by their education. Therefore, if 10 doctors provide the same response, it should not be considered as 10 independent opinions.
6.Countercultural experts: No idea here
7.Communities: I have not explored this extensively, but completing this post I am talking about might be the beginning
8. Someone claims to have completely made the condition disappear using arbitrary methods. I am not personally aware of any such cases but I suspect that it is feasible and could potentially be relatively simple.
9.Models: I have a precise mechanistic model of the disease and why the treatments fail to cure it. I work professionally in a field closely related to this disease.
In summary, my confidence comes from, 1. being an expert in a closely related field and understanding what other people are missing and above all, why they are missing it, 2. having a mechanistic model 3. finding publications that manifest similar opinions.
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I’m not exactly in this position, but I think it is somewhat adjacent. I have stage 4 prostate cancer and after initial treatment (chemo + castration) decided to stop seeing my urologist for periodic checkups. I do regularly get my blood tested by a lab outside of our (European) healthcare system.
This was not exactly due to the establishment being “wrong”, but a combination of factors:
Quality of care wasn’t great and I can’t stand the paternalistic nature of healthcare (in my country).
After five months of pretty intensive self study and an occasional question to my doctor I felt that I had a sufficient understanding to improve my treatment beyond “standard of care”. It probably helps a bit that my brother is a doctor.
Three and a half years after diagnosis I’m doing better than expected, but of course there is no way to tell if this is due to luck or my own treatment.
At first I was a bit frustrated that none of my doctors seem to care, but I understand that they’ve been thoroughly trained to ignore anecdotes (and they’re probably also overworked).
I feel it important to mention that I’m not into alternative medicine. I got my GP to prescribe off label medication and the rest is just lifestyle adjustments (diet and exercise).
Feel free to ask me questions.
Firstly, I am very sorry for what you are going through.
As a training surgeon, I would admit that I’d have a similar approach to yourself. Of my colleagues, I’d only say one in four are particularly ‘conscious’ thinkers despite being intelligent. Many work on auto-pilot in line with guidelines, which is the safest legal position and requires less effort in terms of decision-making. It also alleviates the need for people to read and study the evidence base in detail. Whether through laziness, being over-worked or feeling legally vulnerable, individual patient factors are under-emphasised in favour of following the algorithm.
I would advocate for 1) shopping for a physician who appears to exercise professional autonomy; 2) empowering yourself by reading; 3) if you want to go off-protocol, bring the evidence to an appointment so your physician can make themselves aware; 4) making your personal priorities clear both verbally and in documentation, i.e. advanced decision directives. I am not saying the doctors or guidelines are wrong, but they are standardised and generalised in a manner that gives 80% optimal care to 80% of people, roughly speaking
I’d be interested in a post on “how to shop for a physician” if you want to write more about it.
I wish you recover soon with all my heart
“Is the medical model wrong?” is a bad question. One of the main idea of evidence-based medicine is that treating people based on pathophysiological reasoning (that means based on what a model says) is bad and that you should instead look at evidence about whether certain treatments have an effect or don’t have an effect.
If we would have trustworthy models that we could depend on in medicine we wouldn’t need the expensive stage three medical trials.
Creating good models in medicine is hard. Just because you manage to show that one model is wrong doesn’t mean that you have a model that’s correct or that the evidence in the clinical trials for given treatments is invalidated.
The CIA has a lot of information they don’t want the public or even Congress to know. After 9/11, the CIA stone-walled a lot of investigations. Conspiracy theorists argued that the CIA behaves as if it has something to hide and therefore 9/11 was an inside job. They ignore that the CIA has all sorts of secrets to hide whether or not 9/11 was an inside job, which in turn means that the CIA stone-walling isn’t evidence of there being an inside job.
It’s a typical pattern in conspiracy thinking to try to search for evidence to invalidate a hypothesis instead of seeking evidence for whether an alternative hypothesis is true.
In medicine there are maybe three important questions:
What do you do as a patient?
What are valuable research paradigms to pursue?
For what should health insurance be required to pay?
Even if you learn “the textbook on the subject is filled with errors” that doesn’t give you a clear path to answer either of those questions. Knowing things is hard, that’s true both within the existing structures and outside of it.