From Advocacy to Action

The information below was initially distributed on October 10, 2025.

Today is a significant day. After months of work and 1,045 of you courageously sharing your experiences, we're releasing the BC ME/CFS, Fibromyalgia, Lyme & Long COVID Survey results.

The numbers are both shocking and deeply validating.

You Are Not Alone. You Are Not Imagining This.

93% of you had negative healthcare experiences.

Read that again. This isn't a few "difficult" patients. This isn't an isolated incident. This is nearly every single person with these conditions in BC facing systemic failure.

What 1,045 British Columbians Told Us:

1. 75% said their healthcare providers lack basic knowledge about their conditions

2. 75% experienced simply not being believed

3. 35% reported 11 or more different types of negative experiences

4. 93% of those who used emergency services had negative experiences

Key insight: The consistency of these problems across every region of BC, every type of care setting, and every patient group proves this is not about individual providers or "bad luck." 

This is a systemic crisis.

But Here's What Gives Us Hope

93% also reported at least one positive healthcare experience.

This is the most important finding in the entire survey. Almost everyone has encountered at least one provider who believed them, understood their condition, or gave them proper care.

This proves good care isn't impossible - it's just far too rare.

When providers have knowledge, take time, and believe their patients, care works. The problem isn't that appropriate care can't exist - it's that negative experiences vastly outnumber positive ones, leaving patients exhausted, traumatized, and without consistent support.

We don't need miracles. We need to scale what already works when it does happen.

Why This Survey Matters

For too long, we've been told our experiences were isolated. That we just needed to "find the right doctor" or "advocate better."

The data proves this was never true.

The problems are systemic. They're province-wide. Whether you access specialized clinics or rely on community care, whether you live in Vancouver or Prince George - the challenges are remarkably consistent.

This isn't about us. This is about a system that has failed to educate providers, allocate resources, or coordinate care for hundreds of thousands of British Columbians.

What Happens Next

This survey isn't the end - it's our beginning.

This data will support us in:

1. Presenting evidence-based solutions to healthcare providers and government

2. Launching education initiatives for medical professionals

3. Building systemic change through data-driven advocacy

4. Empowering you with tools to use this data in your own advocacy

5. Mobilizing our community through the My MLA and ME campaign

Your experiences matter. Your stories have power. And now we have the evidence to demand change.

We've created two versions of the survey findings:

1. Full Academic Report

Complete findings with detailed methodology, comprehensive statistical analysis, and extensive appendices. For researchers, healthcare professionals, and those who want the complete picture.

2. Accessible Summary: "Evidence for Change"

A 13-page easy to digest summary designed for patients, caregivers, and community advocates. Includes:

• Key findings with graphics and patient quotes

• A one-page printable summary for you to bring to your next healthcare provider appointment to help your provider understand what you need

• Clear pathways to take action

Ready to turn this evidence into action? Learn about our My MLA and ME campaign. 

Together, we're mobilizing British Columbians to demand systemic healthcare change at the provincial level.

A Note About Self-Care

We know reading these findings may bring up difficult emotions. Seeing your trauma validated in statistics can be both relieving and painful.

If you need support after reading the report, please connect with one of our support groups. You are not alone in this.

Thank You

To every person who took the time to share their experience - thank you. 

To every caregiver who helped a loved one complete the survey - thank you. Your support matters more than you know.

To our partner organizations (National ME Action Network, BC Lyme Society, and ME Victoria Association) who helped distribute the survey - thank you. Your trust and collaboration made this comprehensive data collection possible.

Together, we will use this evidence to create the change we all deserve.