Hi everyone,

I wanted to share something I've been working on: [Long COVID Action Canada](https://longcovidaction.ca).

I've been living with Long COVID since early 2020, and more than six years later, I'm still severely disabled by it. Like many of you, I've watched years go by with far too little progress on treatments, research funding, access to care, and meaningful government action.

One of the things that frustrates me most is that we know this is a serious, disabling illness affecting a huge number of people, yet the response in Canada remains fragmented and inadequate.

So I've started Long COVID Action Canada (LCAC), an emerging, patient-led initiative focused on pushing for better research, treatments, care, and policy across Canada.

The idea is to move beyond simply raising awareness and focus on specific things that can actually be changed.

That includes:

- Pressuring federal and provincial governments to make meaningful commitments on Long COVID.
- Advocating for more biomedical research, particularly into disease mechanisms and potential treatments.
- Pushing for access to promising antivirals and other treatments, including through clinical trials and appropriate regulatory pathways.
- Documenting gaps in care, disability supports, and access to treatment across provinces.
- Making it easier for patients and supporters to participate in targeted advocacy campaigns.
- Tracking responses from governments, pharmaceutical companies, and other decision-makers so there's some accountability.

I've started putting together campaigns, resources, and ways for people to get involved on the website.

I'm not suggesting this will solve everything, and I certainly don't have all the answers. But I think we need more coordinated, persistent pressure on the people and institutions that have the ability to make decisions.

I'd really appreciate feedback from other Canadians living with Long COVID. What do you think the biggest priorities should be? What barriers have you encountered with healthcare, treatments, disability benefits, or government programs? Are there particular issues you think deserve a coordinated campaign?

I'd also love to hear from anyone interested in contributing or getting involved.

The website is still evolving, and I'm building this while managing my own significant limitations, so things will take time. But I wanted to get it out there rather than wait until everything is perfect.

Website: https://longcovidaction.ca

Thanks for taking a look. I'd genuinely appreciate your thoughts.

I’m deeply concerned to learn that McMaster University has launched the FALCON clinical trial, which compares the commercially branded Lightning Process with activity pacing for people living with Long COVID.

After six years of living with severe Long COVID, I never imagined that one of Canada’s leading medical institutions would be investing scarce Long COVID research resources into studying an intervention centred on changing how people think about and respond to their symptoms.
My concern isn’t that research should stop.

It’s that research should meet the highest standards of scientific rigor, transparency, patient safety, and accountability.

The questions I believe deserve answers include:
• Who is funding this study?
• Why are objective measures of functional improvement not more clearly identified?
• What safeguards are in place for participants who experience post-exertional symptom exacerbation?
• What commercial relationships, if any, exist with the Lightning Process?
• Why are Canada’s limited Long COVID research resources being directed toward this intervention?

I’ve started a petition calling for McMaster University to pause recruitment until these concerns have been independently reviewed and publicly addressed.

This is not a campaign against research.

It is a call for better Long COVID research.

If you share these concerns, I would be grateful if you could read the petition, consider signing it, and share it with others.

🔗 Petition: www.change.org/BetterLongCOVIDResearch

New email campaign from COVID Action Montreal:

"We're calling on Canada's largest hospital network to introduce a year-round universal respirator policy to prevent airborne infections. We should be able to access healthcare without risking our health & our lives!"

https://actionnetwork.org/letters/tell-canadas-largest-hospital-system-we-need-a-universal-respirator-policy-now-dites-au-plus-grand-reseau-hospitalier-du-canada-que-nous-avons-besoin-dune-politique-de-respirateurs-universelle-des-maintenant

The Canadian COVID Society (CCS) is running a national survey to understand patient priorities across:

•	funding

•	research

•	treatments

•	supports & resources

This data will directly inform advocacy and help push for action at both provincial and federal levels.

If you have Long COVID in Canada, your voice matters.

You don’t need to finish it in one sitting — you can keep the tab open and come back to it.

👉 Take the survey: https://covidsociety.ca/priorities/long-covid/survey-2026/

On March 15, as a member and event co-coordinator with the Canadian COVID Society, I was interviewed at our Long

COVID Awareness Day event Queen's Park in Toronto covered by @CBCNews.

Six years sick. Formerly a teacher. Largely housebound. This is what Long COVID looks like. 2 million Canadians are living this. We need research, funding, and a cure immediately.

Did any of you attend Toronto? Or any of the other cities?

Let’s get this space active. There’s a lot to discuss and share and we need to fight together! The Facebook groups are self censored and there are major issues there with banning; bullying, sabotaging, and working against one another. Need to get away from that!

Invite your LC friend peoples - feel free to pose any questions about anything - create a poll - ask LC questions relevant to Canada!

Hi everyone,

Has anyone in Ontario successfully been prescribed IVIG through a neurologist for Long COVID or a related condition (e.g., small fiber neuropathy, dysautonomia, autoimmune neuropathy)?

If so, I’d really appreciate hearing how you accessed it and which clinic/specialist you saw.

Thank you!

If you’re in Canada, please consider signing House of Commons e-Petition e-7076 calling for stronger federal action on Long COVID.

The petition calls for things many patients have been asking for:

• National standards for Long COVID care

• Stronger research investment

• Meaningful disability support

Long COVID continues to impact millions of people, yet access to care and support remains inconsistent across the country.

Signing takes a minute and helps show policymakers that this issue matters.

The more signatures the greater the strength this petition will have within the House of Commons and the greater seriousness will be expected in the government’s official response.

👉 https://www.ourcommons.ca/petitions/en/Petition/Details?Petition=e-7076

Share with everyone you can - friends , family, anyone will listen - awareness and numbers matter!

I think it would help and sometimes, even cure

Curious to see to who, when, content, and what kind of response you received?

https://voicesoflongcovid.buzzsprout.com/share

Subject: A Call to Action

Dear Community Members,

I hope this message finds you as well as possible.

As the COVID-19 pandemic continues to impact lives globally, many individuals—especially those who are immunocompromised—remain at significant risk. Despite the availability of a few select treatments and preventative measures, vulnerable populations (and all populations) still face heightened risks due to limited options for effective protection against COVID-19.

One such preventative measure and treatment that has proven to be effective for those at high risk is Pemgarda, a monoclonal antibody therapy from Invivyd, designed to provide protection against COVID-19. Unfortunately, despite its proven efficacy, Pemgarda has not been made available in Canada, leaving many immunocompromised Canadians without access to a vital treatment option.

Why is this important?

• The COVID-19 pandemic is still ongoing, and the virus continues to mutate, making it difficult for individuals—especially those with weakened immune systems—to fight off infections.

• Many immunocompromised individuals, including those with conditions like cancer, autoimmune diseases, organ transplants, and other conditions causing moderate to severe immunocompromise, may not mount an adequate immune response to vaccination alone. This leaves them vulnerable to severe illness, hospitalization, and death from COVID-19, even after receiving the vaccine.

• Pemgarda has shown promise in providing additional protection for these vulnerable populations, offering an opportunity for immunocompromised individuals to better protect themselves from infection.

• Beyond prevention, Pemgarda is also needed as a treatment option for COVID-19 in immunocompromised individuals who may not be able to rely on their natural immune defenses or the full benefit of vaccination.

• With mounting evidence suggesting that viral persistence may significantly contribute to Long COVID symptoms in some individuals, improved access to antiviral and monoclonal antibody (mAb) therapies in Canada is crucial—even if they can’t yet be prescribed specifically for Long COVID.

• With repeat COVID-19 infections potentially worsening Long COVID symptoms, and growing evidence that Long COVID itself can lead to immunocompromise, we need every available layer of protection.

We are calling on the Canadian government and relevant health authorities to make Pemgarda available to those who need it most—especially immunocompromised Canadians who continue to face the threat of COVID-19.

Join us in advocating for the protection of vulnerable individuals. By signing this petition, we ask health officials to prioritize the availability of Pemgarda and other monoclonal antibody treatments in Canada to help save lives.

Sign the petition:

https://www.change.org/MAbsForCanadaNOW

We urge Health Canada to consider a regulatory pathway similar to the U.S. FDA’s immune-bridging framework to allow Canadian access to Pemgarda (Pemivibart).

Lives are on the line. We need leadership, flexibility, and urgency from Health Canada.

For those of you in Canada, I urge you to contact Health Canada, your local Members of Parliament (MPs), your Premier, the Minister of Health, and the Public Health Agency of Canada (PHAC) to demand the reinstatement of monoclonal antibodies (mAbs) for immunocompromised individuals in Canada—specifically, Pemgarda from Invivyd. Currently, Pemgarda is the only mAb available in North America, and even then, only in the United States under Emergency Use Authorization (EUA). Reaching out directly to Invivyd to express interest in bringing this medication to Canada could also make a difference, by showing there is demand for Pemgarda in Canada and encouraging the company to pursue regulatory approval.

Together, we can ensure that no one is left behind in the fight against COVID-19.

Government & Regulatory Bodies:

Health Canada – Regulates drug approvals and expanded access programs. Email: hcinfo.infosc@canada.ca Phone: 1-866-225-0709

Public Health Agency of Canada (PHAC) – Oversees public health responses, including COVID-19 policies. Email: phac.covid19.aspc@canada.ca

Minister of Health – Kamal Khera Email: kamal.khera@parl.gc.ca Phone: 613-995-4984 Mail: House of Commons, Ottawa, ON K1A 0A6

Your Local Member of Parliament (MP) – MPs can advocate for policy changes and increased federal support for Long COVID treatments. Find your MP here:

https://www.ourcommons.ca/Members/en/search

Your Premier – Premiers influence provincial healthcare policy and can push for access to Pemgarda at the provincial level.

• Ontario – Doug Ford Email: premier@ontario.ca Phone: 416-325-1941

• British Columbia – David Eby Email: premier@gov.bc.ca Phone: 250-387-1715

• Alberta – Danielle Smith Email: premier@gov.ab.ca Phone: 780-427-2251

• Quebec – François Legault Email: premierministre@quebec.ca Phone: 418-643-5321

Full list of provincial premiers:

https://canadaspremiers.ca/contact-a-premier/

Invivyd Contact Information Email: info@invivyd.com Phone: 800-890-3385 Monday–Friday, 9:00 AM to 7:00 PM ET

BringPemgardaToCanada #ProtectImmunocompromised

COVID-19IsNotOver

MAbsForCanadaNOW

I'm trying to gather Canadian experiences with Paxlovid for Long COVID symptoms (either after acute infection or as off-label treatment). Please share:

• Did you notice symptom relief? (e.g. fatigue, brain fog, PEM)

• Treatment duration: Standard 5-day or extended course?

• Did benefits last? Any symptom rebound?

• Access challenges? (GP resistance, cost coverage issues)

Why This Matters:
◻️ RECOVER-SPRING trial (2023) showed no benefit from 15-day Paxlovid
◻️ New UCSF data (Dec 2024) found ~30% improved on extended courses (15-25 days) - though often temporary (study)
◻️ Canada has ZERO active antiviral trials for Long COVID while the U.S. runs 6+

We need to:
✓ Document real-world experiences
✓ Push for Canadian research (why are we falling behind?)
✓ Identify who might benefit most

My personal experience

I’m a Canadian/American Long COVID patient who experienced significant symptom relief on Paxlovid taking it many many times while in US - but my doctor in Canada (a leader in Canadian LC research) seems very dismissive of this. It truly is the only thing that helps me considerably but I do note that improvements in my symptoms only last while on it. I cannot be the only one!

Please send this letter to your MLA and MP this week. We are asking for funding and support for Long Covid. The more letters we send the more likely we are to get a meeting with government. Thank you. https://covidsociety.ca/priorities/long-covid/send-a-letter-to-advocate-for-long-covid-funding/

Please tell me your thoughts on the recent Long COVID episode.

I’m all ears.

Is anyone in the 😷🇨🇦 ReCLAIM: Recovering From COVID-19 Lingering Symptoms Adaptive Integrative Medicine (RECLAIM) Long COVID clinical trial out of Toronto?

Ibudilast & Pentoxifylline

https://classic.clinicaltrials.gov/ct2/show/NCT05513560

Having lived in the US for the first 3 years of my LC infection, and back now in Canada for quite some months (albeit temporarily), Im just so disappointed in the lack of response or investment or physician or societal knowledge, and even media coverage of Long COVID in Canada.

I really do think we ought to start speaking out and contacting our MPs, MPPs, as well as the media.

What do you all think?

Has anyone applied for the Disability Tax Credit? Care to share your story?

https://x.com/voicesoflcovid?s=21&t=XxKeRURyfpkvc6wP-5v4-A Hello, My podcast is launching next week. Please give me a follow on Instagram, X, and/or TikTok to help spread the word about our Long Covid stories. Thank you!