The 2026 EDS Criteria

🖤 By Antonia @ Unremarkable Me | Published June 2025

If you live with Ehlers-Danlos Syndrome (EDS) or Hypermobility Spectrum Disorder (HSD), you already know the drill. You know the soul-crushing dread of walking into a doctor’s office, handing over your medical history—and watching their face fold like a badly assembled deckchair.

"EDS... is that the bendy thing?"

Yes. And also the thing where my body treats gravity like a loose suggestion, digestion like a cryptic puzzle, and pain management like a group project where nobody turned up.

Well—brace yourself (literally, if needed). Because 2026 brings the long-awaited arrival of the new international diagnostic criteria for EDS and HSD. And no, this isn’t some dusty academic reshuffle nobody reads. This is the first major rewrite since 2017—a rewrite designed to fix the broken bits of the last broken attempt.

And let’s face it—“broken bits” is basically the unofficial tagline for EDS anyway.

This isn’t just about clinicians ticking boxes. This is about us—our lives, our bodies, and the exhausting, confusing, utterly bonkers reality we’ve been living with for years finally being written into the official rulebook.

So Who’s Behind It?

• The Ehlers-Danlos Society is coordinating the update.

• It’s being developed by the International Consortium on EDS and HSD, a group of researchers, clinicians, and—crucially—patients.

• Data is drawn from five years of global research, clinical collaboration, and the Global DICE Registry—a patient-led database designed to shape this exact update.

Why This Actually Matters

We Might Actually Get Diagnosed (Correctly)

Forget the medical pinball machine. The current criteria lean far too heavily on outdated tools like the Beighton Score—biased against adults, children, and people of colour.

The 2026 criteria? They’re designed to look at the whole person, not just whether your thumb can wave awkwardly at your forearm.

Find out more about the DICE.

It Validates Symptoms We’ve Been Gaslit Over

EDS isn’t just bendy joints. It’s fatigue. Dysautonomia. Gastrointestinal disasters. Mast cell issues. Chronic pain. Neurological nonsense.

The symptoms many of us have been told are “anxiety”, “bad luck”, or “probably just stress”? Yes—those. They’re finally being recognised as part of the condition. Because guess what? It’s all connected. And it’s all real.

🌐 Full update details from the Ehlers-Danlos Society.

It Could (Eventually) Improve NHS Care

No, the NHS hasn’t formally adopted the criteria yet. But UK doctors are already training via EDS ECHO—a tele-education programme bringing healthcare professionals up to speed on EDS and HSD.

Translation? Your GP might soon actually know what EDS is. Let’s pause for a cautious, suspiciously side-eyed slow clap.

It Gives Us Leverage

New criteria give us something powerful: legitimacy.

That means pressure to:

• Update NICE guidelines

• Create consistent treatment pathways across the UK

• Reduce the postcode lottery where one GP sends you for physio, and another gives you… a patronising leaflet about posture

  
  

It Was Built With Us in the Room

For the first time, the patient experience wasn’t an afterthought—it was the foundation.

The Global DICE Registry, along with countless community surveys, directly shaped the criteria. Your stories, your data, and your lived experiences are now part of the official framework.

We are no longer just anecdotal evidence. We are the evidence.

What It Won’t Fix (Yet)

Let’s not get carried away. This is a huge step—but it doesn’t come with a magic wand, a fully staffed NHS clinic, or a free mobility aid of your choice.

It will not solve:

• The 2+ year NHS waitlists for specialists

• The lack of properly funded, accessible multidisciplinary EDS clinics in the UK

• The ongoing battle with the DWP, which still seems to think “invisible disability” means “imaginary”

• Medical gaslighting that’s somehow still legal in 2025

• The shocking lack of research on EDS in marginalised communities

The criteria are a door. But make no mistake—we still have to fight to get through it.

What Can You Actually Do?

Action	Why It Matters
Join the DICE Registry	Your data directly shapes research, criteria, and future care.
Encourage Your GP to Join EDS ECHO	The more clinicians trained, the better care we all get.
Speak Up	Write to your MP. Join support groups. Share your story. Change requires noise.

Final Thoughts: This Isn’t Just About Criteria

For those of us living in bodies that glitch like badly coded computers—crashing randomly, overheating for no reason, throwing up error messages no one can read—this isn’t just about a diagnosis.

It’s about being seen. About having the system finally put a name to what we’ve carried quietly for years.

It’s about not having to explain, yet again, that no—you’re not “just anxious”. No, Pilates won’t cure it. And no, Karen, your collagen supplements will not fix this.

This won’t solve everything. 2026 isn’t a finish line—it’s a starting point. But it’s the beginning of something better. Of turning survival into recognition. Of pushing a broken system to finally—finally—stop pretending we don’t exist.

Want to share your experience, support the community, or just scream into the void with people who get it?

Join us at UnremarkableMe.com or hop into the Lantern Lounge—our space for conversations, connection, and the occasional well-earned rant.

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🔗 Sources & Resources

• The Ehlers-Danlos Society – 2026 Diagnostic Criteria Update

• Global DICE Registry – Be Part of the Data

• EDS ECHO – Free Clinical Training

• NICE – UK Clinical Guidelines (pending updates)

• EDS Support UK