In recent decades, communication and information transfer has improved exponentially. It is incredible that if someone in London describes a strange new symptom, within hours someone in Toronto can post, “Wait, I’ve had that too.” Within a few days, there’s a thread of people comparing what’s worked, what hasn’t, and what their doctors have said.
This kind of instant communication often allows genuine treatments to be teased out of the medical subconscious, even leading to the adoption of these treatments in general practice.
The truth is, a lot of what we now accept as standard medicine started out as anecdote. People trying things. Noticing patterns. Telling each other. The only difference between now and then is the power of the internet. In the past, those stories moved slowly: through families, communities, maybe a few letters in a medical journal at best.
But now, the same kind of evidence spreads instantly. And that makes it more important than ever that the healthcare community has access to this information. Medical professionals have access to an abundance of this anecdotal evidence, if only it could be collected.
The New Landscape of Health Discovery
Technology has changed the entire shape of communication. We are hyperconnected, networked, global. This is a fact that not even the most technology-averse can deny. But in medicine, we act as if only what’s published in a peer-reviewed paper is worthy of our patients. It may be even more helpful to suggest treatments that have come from patients like the ones we are treating.
But what happens when a disease spreads faster than research can keep up? When something like Long COVID or POTS affects millions, but the trials take years to design?
The information finds a way to reach those who need it, and sufferers turn to each other.
They share what’s working for them, they test ideas on themselves, and they collect anecdotal evidence that traditional systems aren’t built to recognise.
The internet may largely be unusable, but within the thousands of proposed treatments for a disease like POTS, there must be a few that could genuinely help. Every post, every message, every recovery story is data. Real-world data. And right now, that data is mostly ignored.
Why Anecdotes Are Often Dismissed
Our medical progression is held back by an entrenched belief that only randomised controlled trials can tell us what’s true. And yes, trials are gold-standard for confirmation. But they aren’t designed for discovery.
When it comes to nearly every scientific breakthrough, discovery starts with an observation. Someone notices something unexpected and asks what might explain it. Anecdotes are the raw material of that process: they’re not the enemy of science, they’re its origin.
What we’ve lost, somewhere along the way, is the willingness to take them seriously.
Examples to Show The Importance of Folk Evidence
- Aspirin was only developed after centuries of chewing willow bark for pain relief.
- Melatonin became mainstream only after years of anecdotal reports about sleep improvement.
- Probiotics were laughed at before the gut microbiome was properly studied.
- Even long COVID pacing – a now-accepted management strategy – came from patients sharing what worked for them before clinics caught up.
Each of these started as stories from actual patients, not the isolated thoughts of a researcher.
When Disease Outpaces Science
The biggest problem however, is the fact that oftentimes the speed of illness is far greater than the speed of study.
When a new condition appears or mutates quickly, formal science just can’t move fast enough. Ethics boards, funding cycles, publication pipelines — all necessary, but all slow.
Meanwhile, millions of people are experimenting on themselves in real time. If we ignore that, we’re missing perhaps the largest unstructured dataset in human history.
We already know from public health surveillance that crowd-sourced data can be accurate. So why not apply the same thinking to chronic illness, symptom management, or post-viral recovery?
Folk Evidence – Organising The Chaos
This is where the infrastructure simply doesn’t exist. To help a patient with unusual symptoms or a less-researched condition, a GP couldn’t possibly be expected to trawl reddit to find feasible treatments by themselves, because this is a dangerously scattergun approach. Without complex statistical reasoning and some understanding of internet data collation, this could lead to the recommendation of ineffective medication, or even possibly treatments that could do more harm than good.
Imagine if these scattered anecdotes from forums, subreddits, Facebook groups, could be collected into a useful, easily accessible format, not to replace clinical research, but to inform it.
To show scientists where patterns are already emerging, and where lives could be changed just by noticing them earlier.
Anecdotes become hypotheses, which become studies, which become treatments. But in many cases, while the studies are catching up, a GP could still recommend these treatments, helping people before the science has a chance to catch up.
And then what started as “just a story” becomes accepted medicine.
We’re not inventing something new here, just accelerating what already happens.
Why Now?
We’re living through the fastest information era in human history.
Our problem isn’t a lack of data. It’s a lack of structure, of systems to catch it before it disappears.
If we can build that system, then maybe these anecdotes can be given legitimacy, and maybe the next medical breakthrough won’t take decades. Maybe it’ll take months.
Because every treatment starts with someone saying, “This helped me.”
And it’s time anecdotes were taken seriously again.