Canada declared the emergency over.It’s time for Canada to act on Long COVID.
We work for the millions of Canadians who never recovered. It has been — days since the pandemic was declared.
Canada stopped counting in 2023.
These are the most recent national figures that exist. They describe June 2023 — more than three years ago. No newer national survey has been published.
Source: Statistics Canada / Public Health Agency of Canada, Canadian COVID-19 Antibody and Health Survey follow-up, reference period June 2023, published December 2023. See the data ↗
Turn evidence into action.
Long COVID Action Canada is a grassroots, patient-led initiative in formation. We are here to answer a practical question:
What can we do to make change?
There is no shortage of problems facing people with Long COVID. The harder question is where action can actually make a difference. That’s what we look for.
A research decision that deserves scrutiny. A policy that needs to change. A consultation patients should be part of. A funding decision that needs attention. A question that has gone unanswered. A gap between what institutions say and what people with Long COVID are experiencing.
Then we work out what can be done about it. What needs to change? Who has the power to change it? What evidence supports the ask? And what can the rest of us do to help move it forward?
Sometimes the answer is a petition. Sometimes it is an email, a submission, a meeting, a public question, an analysis, a request for records, or a coordinated campaign. And sometimes the first job is simply figuring out which action would actually matter.
Not everyone has the same time, health, energy or capacity. One person may have two minutes to sign something. Another may have ten minutes to write a decision-maker. Someone else may be able to examine a document, contribute research, share professional expertise or help build a campaign. All of those can matter.
Our job is to create meaningful opportunities for action, at different levels of effort, so people can contribute in ways that are realistic for them.
Long COVID already asks enough of the people living with it. Taking part should not require becoming a full-time advocate.
Find the opening
Identify a decision, policy, study, funding question or unanswered problem where action could make a difference.
Make the ask clear
Work out what needs to change, what evidence supports it and who has the ability to act.
Create a way to act
Turn the ask into something people can actually do, from a two-minute action to deeper involvement.
Follow through
Track the response, publish what happens and decide what should happen next.
Five priorities. One goal.
Better lives for people affected by Long COVID across Canada. These are five areas where we believe focused action can help move us closer to that goal.
- 01
Research
Push for ambitious biomedical research and treatment trials that match the scale, complexity and urgency of Long COVID.
- 02
Policy
Turn evidence and lived experience into clear asks of governments, health systems and funders.
- 03
Advocacy
Create practical ways for people to help push those asks forward, from a two-minute action to a sustained campaign.
- 04
Transparency
Ask who made the decision, what evidence informed it, where resources went and whether patients are getting straight answers.
- 05
Patient Voice
Create meaningful ways for people with Long COVID to shape the research, care and policies that affect their lives.
Long COVID patients deserve better.
The FALCON trial at McMaster University compares activity pacing with the commercially branded Lightning Process in people with Long COVID.
We are asking McMaster to pause recruitment until an independent scientific, ethical and patient-led review has examined the study’s design, participant protections and commercial relationships.
We put five questions to McMaster on 2 August. None has been answered.
Already signed? Sharing it is the next most useful thing you can do.
Ottawa has answered. Most of it already existed.
The federal government has responded to petition e-7076, which asked for a national inquiry, national care standards, treatment access and disability support. We read the response line by line.
Most of what it points to was already announced before the petition was written. That matters, because a response is not the same thing as a new commitment.
Analysis is only useful if it helps answer the next question:
What can we do about it?
We are looking at what the federal response leaves unresolved, who has the ability to act on those gaps and where further pressure could make a difference. When there is a useful next action, we will make it clear.
We’d rather build this with you than announce it to you.
Hear about opportunities to act and take part when something fits your interests, time and capacity.
Taking part is not a commitment. You choose what works for you each time.
See something we should be looking at?
A study. A policy. A funding decision. A consultation. A question nobody seems to be answering.
You don’t need to know the solution — if organized action could make a difference, tell us.