by Adam Brown BScPT MClScPT FCAMPT
updated June 24, 2021
What is Long COVID?
COVID-19 has brought many challenges for patients, governments and the healthcare community. Early in the pandemic patients and healthcare workers thought that COVID-19 was a time limited condition. If you survived the acute infection, it was expected that you would make a full recovery in a relatively short period of time. But over time, it became clear that some patients were experiencing more long term effects of COVID-19. Even after their acute infection resolved, symptoms remained and new symptoms began to appear.
For many patients this has been an extremely difficult time. While the rest of the world was focused on the immediate crisis of controlling spread and managing the acute disease, these patients were feeling as though they were being forgotten. In many cases health care workers didn’t believe them, and at the best of times, doctors were uncertain how to help.
Early in the COVID-19 pandemic, it was difficult or impossible to access testing. This has resulted in many patients who are suffering from COVID Long Haulers, while having never received a positive COVID test. This has created further complications for patients who want diagnostic clarity and access to healthcare resources that are only available through research studies that require proof of COVID infection.
Over the last few months, awareness of Long COVID (also known in the medical community as “Post COVID Syndrome” or “Post Acute Sequelae of COVID-19” ‘PASC’) has improved slowly. But understanding of the condition is still limited.
How Common Is Long COVID?
Data from the UK and China indicate that up to one third of people who are infected with COVID-19 still experience Long COVID symptoms at the 6 month mark. This amounts to over one million people in the UK alone. WIth infections still occuring around the world, the number of people who continue to be impacted by this condition is staggering.
Who is Likely to Get COVID-19 Long Haulers?
This is a question that researchers have been trying to answer since the condition was first identified. If we can understand who is at more risk, this can help Physicians understand the disease’s underlying mechanisms and focus treatment better. Some of the early data on this question has been surprising. For instance, according to study results released June 4th 2021 from the NHS:
- Patients who had mild acute COVID symptoms still have a high rate of developing Long COVID;
- Long COVID does not only occur in older individuals or people with other complex health conditions;
- The prevalence of Long COVID may actually be highest between the ages of 35 and 69.
How Do I Know If I Have Long COVID?
If you had, or suspect that you may have contracted COVID-19, and you have since developed symptoms, you should have a healthy suspicion that it could be Long COVID. There is no definitive test for Long COVID, but some research and medical programs can use tests to see if you have previously been infected with the virus. A good medical team will rule out other potential causes of your symptoms and will look at similarities between your presentation and other patients whom we know to be suffering from COVID Long Haulers.
What Are The Symptoms of Long Haulers?
The presentation of Long COVID is highly variable in symptoms and severity. However, there are some common themes. An individual suffering from this condition may have some symptoms and not others. Ultimately, every patient is different and must be treated as an individual.
The most commonly reported symptoms of Long COVID are fatigue, shortness of breath, muscle aches and difficulty concentrating (“brain fog”).
It is important to note that the fatigue that patients experience is not the same as simply ‘feeling tired’– it is often very extreme and can make it impossible to perform normal activities of daily living. It is also important to note that these patients are not simply deconditioned. This belief can lead to exercise based treatment that can make a patient’s condition permanently worse.
Other symptoms that have been noted are:
- Joint pain
- Post Exertional Malaise (PEM)
- Chest pain
- Autonomic dysfunction (abnormal control of heart beat and blood pressure)
- Loss of smell or taste
- Depression and/or anxiety
- Postural Orthostatic Tachycardia Syndrome (POTS)
Symptoms of Long COVID often come in waves or “episodes” that can last for days or months before reducing again. Patients regularly report that if they are too physically or mentally active, it causes them to “crash” which is characterized by extreme fatigue and a worsening of many of their symptoms simultaneously.
How is Long COVID Treated?
Long COVID is a multi-system, multi-organ condition with a very wide and divergent presentation. Medically speaking, patients may need help from several specialists including cardiology, neurology, nephrology and rheumatology. Many patients will benefit from seeking care for any related mental health issues they are experiencing. It is important to note that while Long Haulers can present with anxiety and depression as part of the syndrome, it is not primarily a mental health condition.
Rehabilitation and Long COVID
Some members of the rehabilitation community are beginning to expand their understanding of Long COVID. It is very important that patients seek care from professionals that have an understanding of the condition and how symptoms tend to behave. In particular the following cautions should be considered:
- Rehabilitation professionals must fully understand Post Exertional Malaise (PEM) and the dangers of encouraging an increase in activity before a patient is ready.
- They must understand the value of pacing as a treatment and the degree to which many patients need to use this strategy to get symptoms under control.
- Professionals must be comfortable with cardiorespiratory rehabilitative concepts and interventions, as well as good global recovery strategies.
- They must understand that the symptoms should not be treated as stand alone problems, but rather as a part of a much larger syndrome.
At Cornerstone Physiotherapy, we have developed a Long COVID rehabilitation program that utilizes these concepts and is informed by the most current evidence with support from the medical community on the front lines of COVID-19. We use biometric data from wearable devices and symptom surveillance to inform the pacing and progression of physical activity in the safest and most accurate way possible. Patients are given very clear and easy to follow instructions. Anyone in Ontario can access this program.
Click HERE to learn more.
Does Long COVID Go Away?
COVID-19 Long Haulers has not been around for long enough to know if it will resolve in every patient. Early studies are seeing patients going through a series of exacerbations and remissions. Some are recovering completely, while others continue to suffer. More time is needed to properly understand the natural history of this condition.
Long COVID has a striking similarity to a disease called Myalgic Encephalomyelitis previously referred to as Chronic Fatigue Syndrome (ME/CFS). A large proportion of cases of ME/CFS start with a viral infection so it is reasonable to look to the ME/CFS experience for guidance. Some patients recover from ME/CFS and others struggle for extended periods of time. Pacing and management of Post Exertional Malaise are key to helping people with this condition.
What Should I Do If I Think I Have Long COVID?
If you think you may be suffering from COVID Long Haulers, it is important to get help from professionals who are dealing with this condition regularly. If you live somewhere where a large research study is taking place, like the CanCov study in Canada, it can be helpful to sign up to participate so that you gain access to doctors who are focused on this condition.
As mentioned earlier, many patients have had trouble getting medical professionals to believe them, or they have been dismissed as mentally ill. Seek out the help of a primary care doctor who believes you and understands the condition. Then follow up with specialists that you may need to manage your condition. Next seek a rehabilitation program that is specific to Long COVID and where the professionals meet the criteria outlined above.
Many Long COVID patients have found support in various Facebook groups or online forums where individuals can share their experiences and support one another through this extremely difficult condition. A quick search on your chosen social platform may connect you to others dealing with similar challenges.
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