What you need to know about long COVID diagnosis and treatment in Ontario
Is long COVID Chronic Fatigue Syndrome?
Long COVID (also known as post-COVID-19 condition and post-acute COVID-19 syndrome among other names) is a brand-new diagnosis, which means it hasn’t been defined very well yet. A lot of the research considers any symptoms that you still have three months after an acute COVID-19 infection to fall under the category of long COVID. This can include anything from a lingering cough, to diabetes triggered by the infection, to Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS/ME).
Notice that diabetes and CFS/ME are their own conditions - what they have in common is that they were triggered by a COVID-19 infection.
CFS/ME can be triggered by a lot of different things - from the flu, to a surgery, to a period of acute stress - and COVID-19 seems to be very good at triggering it.
What is CFS/ME?
CFS/ME is a chronic health condition with three key features (plus a couple others that are pretty common).
Fatigue that came on at a defined time and significantly impacts your life.
Malaise, an unpleasant and often painful feeling, that happens after exerting yourself, even a little bit.
Unrefreshing sleep - waking up feeling unrested even when you slept plenty.
It’s also common to have brain fog and/or distressing symptoms that happen when you sit or stand up.
For a diagnosis of CFS/ME, you need to have symptoms for at least six months - but I strongly suggesting looking into it after three if you’re concerned.
We don’t yet know exactly what causes CFS/ME, but we know that it is a very real, physical change in the way the body produces energy.
How to get a long COVID diagnosis
A diagnosis of CFS/ME requires a thorough assessment of those five symptoms listed above, which includes a detailed conversation with your doctor, plus any relevant physical exams, blood tests, and other testing.
Technically, a family doctor should be able to diagnose long COVID, but they may need help from specialists to fully evaluate your symptoms.
Unfortunately, many family doctors in Ontario are not familiar with long COVID and CFS/ME, or they don’t feel comfortable doing the assessment on their own. The same is true of many cardiologists and rheumatologists, who are often the specialists you’ll get sent to if your main symptoms are palpitations or pain, respectively.
If you’re having trouble getting the assessment you need, you have a couple options:
Advocate for yourself by bringing resources for your GP to your next appointment - for example, you can bring along this document that the Ontario Ministry of Health created for primary care providers.
Seek out other experts - for example, as a naturopathic doctor in Ontario, I can complete this assessment and collaborate with your primary care provider to finalize your diagnosis.
One final point: some institutions require a positive COVID-19 test (either PCR or a rapid test) at the time of the onset of symptoms to officially diagnose long COVID. The diagnosis of CFS/ME would be the same, but without it you may have trouble accessing some of the resources that have become available since there has been a greater awareness of COVID-19 as a trigger.
Is long COVID curable?
The first question many patients as me is “Will I recover from long COVID?”
The scientific literature overwhelmingly shows that CFS/ME, including the long COVID variety, is a chronic condition.
But that doesn’t mean you’ll never get better.
A small subset of people do seem to achieve total remission - it seems that people who had fewer symptoms to start with, and who get diagnosed and treated earlier are more likely to completely recover.
More encouragingly, most people who get appropriate treatment do see improvements in their symptoms.
In my experience, this means they are able to:
Understand their energy levels so they have more predictability.
Manage their activity levels so they stop crashing so often.
Train their autonomic nervous system so they can stand up without their body freaking out.
Support their energy production so they can do more and think better.
It’s also not uncommon for people to achieve temporary remission - periods of time ranging from days to months when their symptoms completely go away. The triggers of these remissions vary wildly, so it can help to work with a knowledgeable practitioner who can help you find what works for you.
Long COVID treatment in Ontario
Long COVID clinics in Ontario are increasingly closing operations or getting harder to get into.
So if you’re not one of the lucky few who is able to get an internal referral to the University Health Network clinic in Toronto, what do you do?
You find a private practitioner who really knows what they’re doing.
The majority of private practitioners advertising long COVID support are physiotherapists - which is helpful if you need help finding ways to stay active and strong while dealing with post-exertional malaise.
But you may want to consider a practitioner who is able to take a more encompassing approach - like a naturopathic doctor.
Naturopathic doctors are regulated healthcare providers in Ontario, which means we can order blood tests, complete a diagnostic assessment, and provide evidence-based guidance not just for exercise, but also supplements, nutrition, nervous system regulation, and more - making us perfectly suited to supporting folks with CFS/ME.
For example, here’s what you’d experience if you choose to work with me through my BestPace Method.
First, you get a thorough assessment so you can be sure there’s no other condition being missed.
Next, we get you gut health under control so you can actually absorb the nutrients you eat (because I’ve never met someone with CFS/ME who had great digestion.)
Then, we tune up your immune health - quelling any inflammation or reactivity that’s been keeping your body on high alert.
Finally, we support your cellular energy production, allowing you to find the Best Pace scenario where you can live your life without crashing.
Every step of the way, we support your nutrition, energy, and resilience at a pace designed for bodies with CFS/ME.
And if you’re new here and worried that a naturopath might not quite be your vibe - don’t worry - I work alongside any and all medications that you need, am neurodiversity-oriented, trauma informed, and body neutral - and you can learn more about my approach here.
Want to find out if the BestPace Method is right for you?