I’m sure you have been hearing a lot lately about Long COVID. You may have heard it called many different things: Long-COVID, Post-COVID Syndrome, Myalgic Encephalomyelitis, Post-Viral Fatigue Syndrome, Chronic Fatigue Syndrome, ME/CFS, long-haul COVID, or post-exertional malaise (really a symptom, or PESE – post-exertional symptom exacerbation). These terms are not interchangeable, but in the conversations on these conditions, they are all frequently mentioned. I’m going to give you a brief overview of what you need to know about Long-COVID and what role PTs play in managing this condition.
First, new evidence suggests that around 55% of all people who have had COVID-19 will develop at least one of the following symptoms. MORE THAN HALF of all people who have had COVID-19. Yes, You read that correctly and you can go read the article yourself (citation below: Taquet, 2021). Long-COVID has been associated with a host of symptoms that result from the initial viral illness regardless of how impaired or sick the individual became because of it. What that means is that someone could develop Long-COVID after an asymptomatic bout of COVID-19. Some sources estimate that Long-COVID affects about one-quarter to one-third of people who have had COVID-19. Nearly one-third of all people who experience long-COVID had no symptoms of active COVID-19 infection.
Most people who experience Long-COVID show symptoms of fatigue and shortness of breath but, according to the Mayo Clinic, many other symptoms have also been associated with Long-COVID:
- Joint pain
- Chest pain
- Memory, concentration or sleep problems
- Muscle pain or headache
- Fast or pounding heartbeat
- Loss of smell or taste
- Abdominal discomfort
- Depression or anxiety
- Dizziness when you stand
- Worsened symptoms after physical or mental activities
That last one is where we are going to spend some time. Worsened symptoms after physical or mental exertion is what has been termed “post-exertional malaise, (PEM)” or “post-exertional symptom exacerbation, (PESE)” and is a symptom that can and should significantly impact your rehabilitation plan and exercise prescription for patients with long-COVID.
Long-COVID with PEM
Rehabilitation for patients with Long-COVID has been a troublesome and confusing concept, as these patients do not and cannot progress like the typical respiratory failure patients do in therapy. The reason for this (we think, as evidence is frequently developing) is the diffuse endothelial damage of the vascular system throughout the entire body secondary to COVID-19 infection. The vasculature in the lungs can be significantly damaged producing impaired ventilation/perfusion ratios. The endothelium cannot produce or release the chemicals necessary for efficient or effective vasodilation to increase blood supply to the tissues. This produces impaired vascular return to the heart. The brain cannot get enough oxygen because of these other faults. In addition, there are many effects of this diffuse vascular damage that we can’t completely account for, but that seriously impact overall physiological function, such as the increased presence and reduced ability to clear inflammatory substances. These issues, among others, contribute to the increased incidence of clotting.
But the endothelium is a two-way street. Things don’t just pass into the bloodstream, but also pass out of it through this single-cell layer. And when it isn’t functioning properly, all those things that need to get out just can’t. This results in a build-up of inflammatory substances like cytokines and interleukin-6. Inability to clear these inflammatory factors contribute to ongoing damage to the endothelium, creating an iterative process.
And, let’s not forget that some treatments for COVID-19 can actually produce Long-COVID symptoms. Yep, that’s right. Some of the treatments for COVID can cause Long-COVID-type symptoms. Specifically, monoclonal antibody treatment, which has been around for a while, is known to be cardiotoxic. You can read more about how to monitor patients who have received this treatment HERE.
If your patient is experiencing post-exertional malaise or symptom exacerbation secondary to Long-COVID, you should not be pushing them to the point of developing this malaise, as it can take days or weeks to recover from a single bout of the activity or mental exertion, if they are able to recover at all. Your PT evaluation could be all the exertion it takes to put these folks out for a week. But that doesn’t mean there is nothing we can do. Physical Therapists can hold many important roles when managing patients with post-exertional malaise. Let’s talk about some of those roles.
Managing Patients with Post-Exertional Malaise
- Do No Harm: Our first job, as Decrary and colleagues (2021) so eloquently stated, is to do no harm. But, how do we go about our job and not do harm to these patients? Take some steps to educate yourself, first. There are several continuing education courses to help you out that revolve around treating patients with post-viral fatigue syndromes and chronic fatigue syndrome. We need to see this as similar to trauma-informed care. Many of these patients have experienced trauma in some form, whether that be within the experience of severe COVID and being hospitalized for a long period of time, or because they feel they have been dismissed by other healthcare providers. Either way, approaching management through a trauma-informed lens can be helpful.
- Validate and Advocate: Physical Therapists hold the tools to validate and advocate for our patients. We can assess their physiological responses to activity, because that is what we are trained to do, and report them to the medical team to validate concerns and help guide treatment. We can be the evidence-supported voice for our patients, improving their care and their experience.
- Stop. Rest. Pace. BUT Do It Right!: Decrary and colleagues (2021) released the Stop. Rest. Pace. Guidelines for treating patients with Long-COVID (and other post-viral illnesses). Implementing these guidelines into our practice is critical. But it’s really not that simple. If you’ve ever visited the ME/CFS Twitter or Facebook groups or spoken to people who have ME/CFS, they will often tell you that they’ve tried Physical Therapy, and gotten worse. They know we exist and they are told we can help, but we just aren’t doing it to the best of our ability. In speaking with these folks, that is really because we aren’t teaching ALL of the Stop. Rest. Pace. concepts that we could be teaching.
The biggest gap in the education we provide seems to be education on activity pacing. This is an area where we should be the experts. We should know how to pace out activity to help a patient safely complete a 6-minute walk test or safely finish a marathon, but we aren’t translating those concepts to patients with Long-COVID. Pacing applies to the total amount of activity a person has the ability to perform over the course of a day, not just for exercise, but for every single thing they have to do, from showering to dressing to meal prep to driving. If that amount of energy (both physical AND cognitive) significantly decreases, we need to help them pace out their day. These are the basics of energy conservation.
All of this doesn’t mean that you can’t make progress. The goal of Stop. Rest. Pace. is to allow for healing time. These patients have some major healing to do for their entire vascular system and you have to keep them active to facilitate that healing. Encourage them, support mental health and faith-based healing, and educate them on a diet that supports tissue healing and reduces inflammation. As they heal, introduce them to low-level activities like beginner yoga, walking, or stretching, and consider injury prevention techniques. Remember that learning novel activities increases the mental load as well as the physical load, so may produce fatigue faster than familiar activities. Therefore, if they used to enjoy a particular activity, try that one, or an adapted version of it first.
Adding a visual can help your patient see this concept. Let your patients lead by having them rank activities they have to perform by how much energy it takes to do each one. Maybe brushing their teeth takes 3 energy units compared to driving to work which takes 6 energy units. Make a chart with these values and ask them how many they can do before they are exhausted or before they know they will experience fatigue symptoms. Use that total number to help them build their day with activities that add up to less than that total number so they aren’t pushing their limits.
Allow them to make choices about what activities they put in their day.
Here’s the shock-value statement: There may be no room for your exercise program. You’ll have to adapt.
These energy charts are a concept I’ve often used for patients who experience chemo or cancer-related fatigue. The visual representation of activities helps to picture an entire day, build in rest breaks, and prevent fatigue.
Patients will make value choices that surprise you, so be prepared.
Use this to establish your plan of care and write goals for these patients.
Finally, you need to reconsider what YOU think of as rest. This may not be what your patients view as rest. They may not live in a place where they can even achieve physical and mental rest. They may hold a job where they feel they cannot achieve rest or cannot take the time off to get the rest they need. They may have used all their PTO and sick time in the hospital. Ask your patients what they consider rest and help them problem solve how they can achieve that.
You can all tell from previous posts that I’m a pusher. I’m usually the one pushing people further, physically and mentally, than they are otherwise willing to go. Even if I can achieve a fraction more today than I did yesterday, I’ll push for it.
BUT NOT HERE. I’ve drawn my line in the sand. This is where we have to think differently. Until that vascular system properly heals, we have to think about the acute phases of tissue healing, protection, providing building blocks, and ensuring the basic levels of function are maintained.
In the next post, I will go into the details on how and why to provide exercise and activity-based interventions for your patients who are post-COVID but without post-exertional malaise. This one might get me some hate mail, so stay tuned!
Do you see patients with Long-COVID? What is the most common symptom they report? Tell me in the comments!
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Taquet, M., Dercon, Q., Luciano, S., Geddes, J. R., Husain, M., & Harrison, P. J. (2021). Incidence, co-occurrence, and evolution of long-COVID features: A 6-month retrospective cohort study of 273,618 survivors of COVID-19. PLoS medicine, 18(9), e1003773.
Décary, S., Gaboury, I., Poirier, S., Garcia, C., Simpson, S., Bull, M., … & Daigle, F. (2021). Humility and acceptance: working within our limits with long covid and myalgic encephalomyelitis/chronic fatigue syndrome. journal of orthopaedic & sports physical therapy, 51(5), 197-200.
Mayo Clinic Staff. (2021, Oct 21). COVID-19: Long-term effects. Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/coronavirus/in-depth/coronavirus-long-term-effects/art-20490351
(No Author). (2021, March 30). Studies show long-haul COVID afflicts 1 in 4 COVID-19 patients, regardless of severity. UC Davis Health. https://health.ucdavis.edu/news/headlines/studies-show-long-haul-covid-19-afflicts-1-in-4-covid-19-patients-regardless-of-severity/2021/03
Centers for Disease Control and Prevention (CDC). (2021, January 27). What is ME/CFS? Myalgic encephalomyelitis/chronic fatigue syndrome. https://www.cdc.gov/me-cfs/about/index.html
World Physiotherapy. World Physiotherapy Response to COVID-19 Briefing Paper 9. Safe rehabilitation approaches for people living with Long COVID: physical activity and exercise. London, UK: World Physiotherapy; 2021
The contents of this blog and all associated pages reflect the opinions of the author and should not be construed as medical advice. Please consult your doctor for medical advice.