Long COVID / ME Resources

We wrote this guide after spending time in Long COVID and ME communities and seeing patients ask the same questions:

Canadians suffering from Long COVID / ME are stuck between a rock and a hard place:

The first problem is that while the public system was built for illnesses with a known treatment, which works great for heart attacks or broken legs, for a complex chronic illness, it works horribly.

The second problem is that, compared to other countries, there is very little available outside the public system. Provincial rules stop most doctors from seeing patients privately, the dedicated clinics have waits of a year or more, and if your province doesn't have options you basically can't go outside of it. Off-label drugs are hard to get, prescriptions from US doctors aren't valid, and Health Canada frequently confiscates medication ordered from abroad.

There are, of course, ways to get around all of these, but because advice from American and European patients rarely applies to the Canadian system, we often see these questions go unanswered.

Until now. Based on interviews with a few Canadian patients that have figured out the system, we're open sourcing this knowledge, because we can't stand to see anyone else suffer.

How Canadian healthcare differs from other countries

If you grew up in Canada, you probably know most of this, but it's always good to have a refresher, especially when most of the advice you'll read online is geared towards the United States and other countries.

Everything is run provincially. Canadian healthcare is best understood as actually having thirteen separate systems. Each province or territory issues its own health card, decides what is covered, and pays only the doctors located in that province. This means that the same level of care that is accessible in British Columbia may not exist in Saskatchewan. Going across provincial borders generally won't work either: clinics usually take only their own residents, and a doctor generally needs a licence in your province to treat you by telehealth.

Your GP is the blocker for everything. In the US and much of Europe, you can book a specialist directly. In Canada you can't. Neurologists, immunologists, MRIs, and Long COVID clinics (just to name a few examples) all need a referral from a family doctor. If your family doctor doesn't understand chronic illness, hard mode turns into impossible mode.

You can't pay your way out. In the UK, Australia and most of Europe, a patient who gets nowhere in the public system can pay a private doctor and be seen in weeks. Canadian provinces restrict doctors from charging for care the public plan covers, so that option barely exists here. Quebec is the one exception: more than 600 doctors there work fully outside the public plan and see patients who pay out of pocket, against about a dozen in the rest of the country. For everyone else, the private system is the United States.

The US is close, but not that close. Most Canadians live within a few hours of the border, and plenty cross it for care. But a Canadian pharmacy won't fill a US prescription, and a US doctor can't refer you to a Canadian specialist. Health Canada is also far stricter than US customs about medication that arrives in the mail.

There are fewer doctors, and it takes longer to see them. Canada has fewer doctors per person than most of Europe, and they serve 40 million people spread along a strip more than 5,000 km wide. In international surveys, Canadians wait longer to see a specialist than patients in almost any other wealthy country. Waits of a year or more are common.

(Some) naturopaths can prescribe. This one works in favour of patients. In most countries, a naturopath can only sell you supplements. In British Columbia, and to a lesser degree in Ontario, a naturopathic doctor can prescribe medication, and work benefits often pay for the visit.

That's the lay of the land. The rest of this guide is what to do about it, starting with your GP, since everything runs through them.

Get more out of your GP

All provinces

Thinking from first principles here: if one person is pretty much responsible for coordinating all of your care, then all of your resources need to go into making sure that's the right person, and when you've found them, charming the hell out of them.

The cardinal rule of GPs: they can actually do way more than they'll ever offer to do for you. This means you need to ask firmly for what you want, and appeal to emotion with how badly you are suffering. One patient we talked to had a GP who first tried to tell them it was all in their head and suggested an SSRI. Once they changed their strategy, that same GP ended up ordering every test on their list, plus two neurology referrals. Here's what we recommend:

Walk in with a list. Write down every test you want and a sentence on why. Print it out or email it to the clinic ahead of time. If your doctor sees you know the illness and have a reason for each ask, they'll usually order it.

Here's what to ask for.

Get "urgent" on every referral. If it's not marked urgent, you're waiting a year or more.

Don't undersell your condition. Describe your worst days. You're suffering way more than their other patients - tell them how.

Bring a one-pager to every specialist. Write down your symptoms, timeline, and everything you've tried. It saves your energy and gives the doctor a head start.

If your GP still won't budge, find another one. Look for GPs in your province who list chronic illness as a focus, who are way more willing to try off-label drugs.

Use a US doctor

All provinces

The US is essentially Canada's outsourced private care system. There, you'll find specialists who understand Long COVID and ME way better than almost anyone you'll get referred to in Canada, and many of the private ones are willing to see Canadian patients via telehealth. The catch is that they can't send prescriptions directly to a Canadian pharmacy, so what you're paying for is help cracking your case, tests you can't get at home, and a letter to your GP or naturopath recommending specific drugs. If your GP is stubborn about prescriptions, a letter from a US specialist goes a long way.

There's no fixed list of doctors who see Canadian patients, but helpforlongcovid.com is a good place to start.

Is it worth it? If your GP is the bottleneck and you have the money, yes. If you're in BC and already have a naturopath who prescribes, you probably don't need it.

Get your medication

All provinces

There are three ways to get the drugs you need for Long COVID / ME in Canada, from straightforward to higher risk tolerance.

Option 1: Canadian doctor, Canadian pharmacy A Canadian pharmacy only fills scripts from doctors licensed here, so you need a Canadian prescriber. Start with your GP, armed with your list or a US specialist's letter. If you have a provincial clinic, use it; BC even does group medication visits. If you're in BC, a naturopath can prescribe almost anything. You can also go straight to a private clinic like TruBalance Healthcare, which has doctors and nurse practitioners prescribing LDN across Canada.

Option 2: American doctor, US Post Office box just over the border: If you're seeing a US doctor, they can't send scripts to Canadian pharmacies, but they can send them to US ones, including cheap mail-order places like Cost Plus Drugs. They ship anywhere in the US but not to Canada, so have it sent to a US mailbox near the border. Health Canada lets returning residents carry in up to a 90 day supply for a treatment they're on, in original packaging with your name on it, as long as you declare it.

Option 3: Importing medication via international freight forwarding: Use the medication search tool at ME/CFS Roadmap to find international pharmacies that ship to the UK, since way more ship there than to Canada. But don't ship directly. First, have your order sent to a UK forwarding address from a service like Planet Express. The package will then look like it's coming in from the UK, which is much less likely to get flagged.

Get disability benefits

All provinces

There isn't just one disability program in Canada, rather a stack of them, and you can be on several at once. Applying is quite a bit of paperwork, so here's the order to do it in:

1. Get documentation: Tell your doctor you're applying and from now on, every visit, tell them every symptom and everything you can't do, even the stuff you usually downplay. Every program decides based on what you can't do, not on your diagnosis, and they read your chart. Also, the forms have to be filled out by a doctor or nurse practitioner, so a naturopath can't sign them.

2. If you just stopped working, apply for EI sickness online. You don't need to wait for your Record of Employment. Apply within 4 weeks of your last day or you can lose benefits. It pays 55% of your pay up to $729 a week for up to 26 weeks. You need 600 insured hours in the last year. Your doctor will need to fill out a medical certificate.

3. If your job has benefits, ask HR for the disability claim forms. Most plans pay for the first two years if you can't do your job, then switch to whether you can do any job, and a lot of people get cut off right at that switch, so look up your date. Most plans also make you apply for CPP Disability and then subtract it from what they pay.

4. Apply for the Disability Tax Credit. Everyone should do this one. You fill out Part A, your doctor or nurse practitioner fills out Part B, and you send it through the CRA's digital application, which gets you a decision in 6 to 8 weeks. Doctors usually charge $100 to $250 for the form. It cuts your taxes, can go back up to 10 years, and it unlocks the Canada Disability Benefit, up to $204.20 a month if you're 18 to 64.

5. If you won't be back at work, apply for CPP Disability. You can apply online through My Service Canada Account. You need to have paid into CPP in 4 of the last 6 years. The test is whether you can regularly do any paying job. The decision takes about four months. If they say no, you have 90 days to ask for a reconsideration and 90 more after that to appeal to the Social Security Tribunal, so don't just take the no if you get it!

6. If money is tight, apply to your province's program. PWD in BC, AISH in Alberta, ODSP in Ontario, every province has one. These are for people with low income.

The National ME/FM Action Network has a CPP Disability guide written for ME and fibromyalgia. Realize has a roadmap for Long COVID. In BC, Disability Alliance BC has advocates who help with applications for free and a fund that covers the doctor's fee for the tax credit form.

See a naturopath

Mostly BC

This is the part most Canadians don't know. In BC, a naturopathic doctor (ND) can prescribe almost any drug - the only things off the table are controlled substances like opioids and benzos.

That means a BC naturopath can write the scripts your GP refuses: LDN, low dose Abilify, Mestinon, blood thinners, even heparin you inject at home. And they're way more willing to try off-label stuff than your GP.

Before you book, ask two things: do they have their prescribing certification (not all do), and do they treat Long COVID / ME.

Finding a good one: search for naturopaths who list Long COVID, ME, Lyme or mold. A lot of them had the illness themselves.

Money: visits aren't covered by the province, but most work benefit plans have a naturopath allowance - check yours. BC PharmaCare does recognize naturopath prescriptions, but private drug plans vary, so check that too. No benefits means out of pocket.

What they can't do: refer you to specialists or get you an MRI. So keep your GP, and run both at once: GP for referrals, scans and free bloodwork, naturopath for prescriptions.

Outside BC, it's a different story. Ontario naturopaths can only prescribe from a short list. Alberta's can't prescribe at all. Saskatchewan, Manitoba and the Atlantic provinces: little or nothing. Still worth a visit, because a good one knows which doctors in your province actually treat this. And note: you can only see a naturopath in your own province.

Got a correction, or know how any of this works in your province? Tell us and we'll add it.