You Shared Your Truth. Here’s What We Built With It.

Last year, more than a thousand of you spoke openly about your experiences

navigating the healthcare system. You shared what worked, what didn’t, and what needs to change.

Today, we’re showing you what we built with that truth.

The Professional Education & Clinical Practice Tools Policy Brief is now complete. This isn’t another report meant to sit on a shelf. It’s a concrete, practical action plan—designed directly from the voices of 1,045 community members.

From Lived Experience to Action

This Policy Brief takes what you told us and translates it into solutions healthcare leaders can actually implement.

The Problem

75% of respondents said healthcare providers lack basic knowledge about ME/CFS and Long COVID. That gap in understanding affects diagnosis, treatment, and trust.

The Policy Brief outlines clear ways to address this—by integrating ME/CFS and Long COVID into existing medical education systems, including platforms like BCGuidelines.ca, rather than reinventing the wheel.

The Approach

Real change doesn’t happen in isolation. That’s why this work focuses on collaboration—partnering with:

• Regulatory colleges

• Health authorities

• Medical schools

Instead of demanding change from the outside, the Policy Brief works within existing infrastructure to create solutions that are practical, scalable, and sustainable.

The Goal

Healthcare providers who:

• Believe you

• Understand your condition

• Have the tools and knowledge to help

That shouldn’t be rare. It should be standard.

What This Means for You

The Policy Brief is already being shared with healthcare decision-makers across British Columbia. But we also knew it was essential to create something just for the community.

That’s why we developed a Community Edition of the Policy Brief.

It explains:

• What changes are being proposed—in plain language

• How these changes could improve your care

• What you can do to support and strengthen this work

[View the Community Edition]

The Hope in the Data

There’s something else in the survey results that matters deeply.

40% of respondents reported having at least one positive healthcare experience—when providers believed them, had appropriate knowledge, and took the time to listen.

That’s not a small number.That’s proof.

It shows that the right care already exists. The problem is that it’s inconsistent—dependent on luck instead of standards.

This Policy Brief is about changing that.

It’s about making good care the rule, not the exception.

And it started with you.

• The Shortened Stakeholder Version of the 'Professional Education and Clinical Practice Tools Brief'