How to Hunt Medical Research Without Losing the Plot

By Antonia @ Unremarkable Me(Chronically ill, hilariously tired, and powered by sarcasm and sheer spite.)

Let’s be brutally honest for a second.

If you live with conditions like Chiari Malformation, Ehlers-Danlos Syndrome (EDS), or—if you’re extra lucky, the glittering jackpot of both—then chances are, you’ve heard this phrase from a doctor at least once:

“There’s not much research on that.”

If you haven’t? Congratulations. You’ve either won the NHS consultant lottery or you haven’t yet asked the kind of awkward, eyebrow-raising questions that make clinicians glance nervously at the clock.

For the rest of us? We’ve learned the hard way that keeping up with research isn’t a hobby—it’s a bloody survival skill.

Because let’s be real: our quality of life can hinge on a study published in a journal nobody reads, six months after we needed it, behind a paywall guarded like it’s the last biscuit in Britain.

But here’s the thing—it doesn’t have to be impossible.

This isn’t about becoming a medical expert overnight (though, honestly, most of us could give a TED Talk at this point). This is about learning how to be your own research detective without rage-throwing your laptop out the window.

So grab a brew, take a deep breath, and let’s talk strategy. Because waiting for the system to catch up is not a plan—but learning how to work smarter, not harder? That’s rebellion, patient-style.

Why Bother? Because Science Is Playing Catch-Up

When you’ve got a condition that’s rare, poorly understood, or just plain medically awkward, you quickly realise the science is years behind the lived experience.

We see it. We live it.But the data? Still dragging its heels like a grumpy toddler in Tesco.

Keeping tabs on research can:

• Get you access to clinical trials you’d actually qualify for.

• Help you challenge treatments that feel like they were designed in 1983.

• Spot new patterns in care before they trickle down to your local GP.

• Give you actual, shiny evidence when faced with medical sceptics.

Or—bare minimum—it’ll help you win that waiting room debate with Karen and her cousin’s mate who once had a migraine.

The Paper That Sparked This Whole Thing

Let’s talk about the UK Chiari 1 Study (UKC1S)—the one that finally brought some hard data to the UK scene.

Published in BMJ Open, this multicentre, UK-wide study looked at how Chiari Malformation Type 1 is treated, how it affects patients, and how we might—gasp—do better.

Quickfire Facts:

• Who? 500+ newly diagnosed patients (surgical & non-surgical).

• What? Quality of life, surgery outcomes, NHS treatment variation.

• When? October 2020 to April 2021.

• Why? Because before this, the UK was basically using international data that didn’t reflect UK practice or patient experience. Mostly US-based. Mostly surgical. Mostly missing the point.

Want to read it? Search: “UK Chiari 1 Study BMJ Open”(https://bmjopen.bmj.com/content/11/4/e043712

Were you eligible? Only if you saw a UK neurosurgeon for the first time during that specific window. But if not, don’t worry—you’re not out of the loop.

You’re just getting started.

How to Keep Up With Research (Without Losing the Will to Live)

1. Track Clinical Trials Like a Ninja

These sites let you peek into trials recruiting right now:

• ClinicalTrials.gov – US-heavy, but includes global studies.

• ISRCTN Registry – The UK’s own registry.

• Be Part of Research (NIHR) – Great for finding UK-based trials.

Search terms to try:

• "Chiari 1"

• "Ehlers-Danlos"

• "Syringomyelia"

• "CSF flow"

• "Intracranial hypertension"

Pro tip: Set up email alerts or RSS feeds so the research comes to you. Lazy donkey science, meet motivated zebra.

2. Paper Watchers: Because Evidence is Power

Research papers don’t read themselves, but these tools help:

• PubMed – Sign up for a free MyNCBI account and create keyword alerts.

• BMJ Open – Especially the neurology and rare disease sections.

• Google Scholar – Alerts for phrases like “Chiari Malformation UK.”

• ResearchGate – Follow researchers and catch early versions of papers, posters, and preprints.

3. Join the Patient Intel Network (a.k.a. Support Groups That Actually Know Stuff)

Some of the best tips come not from textbooks, but from Tina in a Facebook group who somehow got a journal link before the authors did.

Top groups:

• Ann Conroy Trust – UK’s go-to for Chiari/syringomyelia.

• EDS UK – Regular updates on research, webinars, and trials.

Bonus? You might find out about that one weirdly specific CSF flow study before your consultant even reads the title.

4. Twitter (Yes, Really)

Twitter—or X, or whatever it’s calling itself this week—is where researchers hang out, grumble, and quietly leak good stuff.

Follow:

• @TheBNTRC – Brain & spine research in the UK.

• @AnnConroyTrust

• Researchers from the UKC1S study—many tweet updates and conference sneak peeks.

Hashtags to watch:#ChiariMalformation #EDS #Neurosurgery #RareDiseaseResearch #MedTwitter

5. Make a ‘Patient Detective’ Notebook

Whether you’re a paper-lover or a digital note fiend, tracking your finds can save your sanity.

Template:

Title

Link

Author/Institute

Date

Relevant to Me? (Y/N/Maybe)

Questions for My Doc

Walk into your next appointment like you’re prepping for a TEDx talk. Trust me—it’s deeply satisfying.

Final Thoughts (or, The Part Where You Get Fired Up)

Let’s be clear: this isn’t about impressing your consultant or collecting academic brownie points.

It’s about owning your seat at the table.

Because too often, the medical world talks around us, about us, and over us—but rarely with us. Staying informed is one of the few tools that’s fully ours. And you don’t need a medical degree to wield it—you just need the right tools, a bit of stubbornness, and maybe some Wi-Fi.

So the next time someone sighs and says:

“There’s no research on that…”

You smile sweetly and reply:

“Actually, there is. Would you like the DOI link?”

👊 Power. Informed. Patient. That’s you now.