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Treating Patients with Long COVID: Reframing our Physical Therapy Mindset

Treating Patients with Long COVID: Reframing our Physical Therapy Mindset

Ted DeChane, PT, DPT

Over three years have passed since the first COVID-19 infections were detected in Michigan. After several waves, the medical community has improved testing, treatment, and mitigation of acute infections. Long-term complications of the disease continue to be felt by the medical community and, more importantly, patients themselves. Physical therapists are an important member of a Long COVID treatment team, however; many Long COVID patients respond poorly to typical PT programs of increasing activity and exercise. Physical therapists must be aware of the unique requirements of patients within this population in order to become effective at managing the symptoms of Long COVID.

I found myself acutely ill with COVID-19 in March of 2020 with little information given the novelty and uncertainty surrounding the virus. Being young, active, and relatively healthy, I imagined the illness would be short-lived even though it had been the most sick I had felt in my adult life and included a few hours in observation at the hospital for intractable fever and unstable vitals. High fevers, coughing, shortness of breath, and aches tormented me for over two weeks until my condition began to improve. I began to resume my daily activities and exercise thinking the worst was over. Little did I know that the road ahead would be long, winding, and difficult.

Running was my choice of exercise. 5K, 10K, half-marathons - I had run them all and loved every second. I was eager to return to training through light jogging with the goal of an upcoming 5K that would later be canceled due to the fall surge of COVID-19 cases. What was previously easy for me - a mile jog - had become tortuous. This seemingly simple activity would leave me bed bound for the rest of the day and often the next. I was not used to this feeling, but figured it was a normal part of recovering from illness. Given my training as a physical therapist, I had set goals on increasing my activity little by little. After months of pushing and getting nowhere, I began to wonder if I would ever recover from this setback.

Frustrated and looking for answers, I did what anyone with a smartphone and time on their hands does - turned to the internet. It was through online channels that I found others experiencing the same thing. People who were not getting better after becoming ill. People who were previously active and pushing through their symptoms. People looking for answers on what was going on inside their formerly healthy bodies. Brought together by a common skillset, I found myself chatting with other physical therapists around the world also dealing with this now-named problem - Long COVID. Thus was born Long COVID Physio, an international organization of healthcare professionals living with Long COVID and committed to providing research and education to rehab professionals and patients. We learned that pushing and increasing activity was not the answer. Perhaps the solution was found in a much older form of convalescence - rest.

Post-viral illness is not a new phenomenon, though it may be unfamiliar to those in the physical therapy field. Myalgic Encephalomyelitis, sometimes called Chronic Fatigue Syndrome or ME/CFS, may be caused by inflammation in neural cells and dysfunction in cellular energy metabolism and ion transport. This is often preceded by a viral infection, and the hallmark symptom of this disease is post-exertional malaise (PEM) or, more recently, post-exertional symptom exacerbation (PESE).1 PEM/PESE is defined as a worsening of symptoms that follows an activity that was previously tolerated without symptoms. These activities can be physical, cognitive, social or emotional. Symptoms will generally occur 12-48 hours after the activity and can last for days or weeks but is variable within and between people2. Many patients with Long COVID also experience this symptom, and the overlap with ME/CFS can help guide physical therapy treatment for Long COVID.

Symptoms of Long COVID are many and cover the gamut of body systems. Patients have reported over 200 unique symptoms across 10 organ systems3. Physical Therapists may be asked to treat a variety of familiar symptoms including shortness of breath, headache, dizziness, neuropathies, and joint pain. Additionally, clinicians will likely see patients with the most common symptom of Long COVID - fatigue.3 Fatigue experienced by patients living with Long COVID is unlike traditional experiences in that it is extreme and debilitating in nature and is not easily relieved with sleep. This symptom often limits daily function and has a negative impact on quality of life.

The first instinct of a Physical Therapist with this patient in front of them may be to provide activity recommendations and slowly increase the regimen as the plan of care progresses. There are several factors that should be considered, however; given our knowledge on the disease process. The World Physiotherapy organization along with many other institutions (including the American Physical Therapy Association, APTA) have provided a document including recommendations for treating patients with Long COVID that can be found as reference number two in this article. In this document, there are four screening tools that should be used before prescribing exercise or physical activity to a patient with confirmed or suspected Long COVID. These include screening for PEM/PESE, cardiac impairments, exertional oxygen desaturation, and autonomic nervous system dysfunction2. These cautions are echoed in the World Health Organization (WHO) guidelines for Clinical Management of COVID-19 listing these same screens as red flags for safe rehabilitation4. A positive finding in one of these areas does not exclude a patient from physical therapy treatment; however, care must be taken to ensure that treatment does not cause a worsening of symptoms for the patient.

Understanding post-exertional malaise or symptom exacerbation may be new for many physical therapists. The initial assessment for PEM/PESE can be done subjectively. Common descriptors of this symptom may include extreme fatigue or exhaustion, heaviness of the limbs or body, confusion or “brain fog,” or feeling drained. Some patients will refer to PEM/PESE as a “relapse” or a “crash.” If an objective tool is required or appropriate the Depaul Symptom Questionnaire may be appropriate for some patients.5 Patients may not realize that the fatigue they are feeling is actually PEM/PESE, and it may be the clinician who first clues them into this symptom. In patients presenting with PEM/PESE, graded exercise therapy, that is, an approach prescribed by clinicians based on fixed incremental increases in physical activity or exercise, is contraindicated.  Instead, a symptom-contingent pacing strategy is more appropriate to ensure patient safety and satisfaction.

A Physical Therapist is likely familiar with pacing strategies as they are often used in patients with cardiac conditions, those in post-concussion protocols, and in cases of overtraining. The unexpected part of pacing in instances of Long COVID is often how quickly and easily PEM/PESE can be triggered with even the lightest amounts of activity. Research in ME/CFS populations with the use of 2-day cardiopulmonary exercise testing has sought a mechanism in understanding post-viral fatigue. One significant difference between control and study groups is when patients reach their ventilatory/anaerobic threshold - that is the point at which lactic acid begins to accumulate faster than it can be cleared, making sustained activity difficult. Studies found that ME/CFS patients were reaching this threshold at heart rates as low as 65 bpm while performing activities as light as 2-3 METs.7 For reference, that level of activity is equivalent to reading, getting dressed, or walking slowly on level ground. With that in mind, it is no surprise that a patient may experience PEM/PESE while exercising, completing housework, or working at a job.

Some therapists may be scratching their head at this point – I need to treat this patient in front of me, but getting dressed is enough to exacerbate their symptoms. How will I prescribe an appropriate exercise program? Exercise is a great tool that therapists use for a variety of conditions, but it is just a piece of our wide scope of practice. The aforementioned WHO guidelines on management COVID-19 confirm that PTs can be useful beyond our training in exercise. They suggest education and skills training on energy conservation as a practical approach to treating patients with Long COVID. They continue that training the use of assistive devices and providing environmental modifications are also appropriate for those with PEM/PESE.4 By adding these different interventions into our plan of care, we can continue to treat the patient without causing harm through symptom exacerbation.

There are many strategies that are useful when initiating a pacing program with a patient, however; the most important aspect is that the program be individualized and patient-centered. Several analogies exist to facilitate a patient’s understanding of their pacing program. A therapist should help guide the patient to determine what analogy and program works best for them. One such analogy, known as the Energy Envelope Theory, states that by maintaining energy expenditure within the level of perceived available energy, patients will be able to improve physical and mental function and reduce symptom severity and frequency/duration of relapse.The theory suggests that patients should only complete activities that they can safely manage without symptom exacerbation, and that by avoiding symptom exacerbation, patients may actually be able to expand their energy envelope and therefore increase their activity levels. On the flip side, symptom exacerbation may actually shrink the energy envelope and cause further activity limitations. Another common analogy is the Spoon Theory which states that patients with energy-limiting conditions have a limited supply of energy which are their “spoons.” Activities cost a varying number of spoons and patients can use this analogy to determine an activity plan for the day. Regardless of the analogy used, the strategy remains the same - avoid symptom exacerbation and strive for symptom stabilization through pacing and rest.

As previously stated, implementing a pacing program should be individualized and patient-centered, but a few basic principles can aid in creating a plan. One of the first steps in establishing this plan should be to determine a baseline - what is the patient able to do without causing PEM/PESE. All activity and exercise should be maintained below this baseline. The therapist should encourage the patient to listen to their body and take breaks in activity even if symptoms are not present. This will ensure that the patient is not exceeding their anaerobic threshold and PEM/PESE will not be triggered. Increases in activity should only occur when the patient is stable and confident in moving forward. The increase should be small in nature and if symptoms occur, the patient should immediately return to the previously tolerated level of activity. When discussing this plan with the patient, it is important to prioritize activities. Ask the patient, “What needs to be done this week? What needs to be done today?.” The therapist can provide strategies that may include delegation, modification, or delaying of tasks. Create a routine that includes planned and meaningful rest breaks. Activity diaries can be helpful for some patients, but may drain the energy supply, so a therapist can assist the patient in completing these logs. Tolerance to activity can change day-to-day and week-to-week, so it is important to review the plan and make adjustments with the patient based on their current capacity.

There are some specific considerations that a Physical Therapist should keep in mind when working with patients with Long COVID. It is important to prioritize preferred activities over therapy sessions. Flexible cancellation and scheduling policies can help in this instance when the patient is unable to make it to a therapy session. Therapists should also utilize telehealth options when possible. A large amount of energy can be expended when preparing and traveling to an in-person therapy session which may leave little room for other activities. In many cases, the traditional therapy model may not be beneficial for this population. Consider a consultative model where the patient makes regular check-ins at less frequent intervals rather than seeing the patient weekly or more. Ensure that the patient is making the decision to increase activity levels by listening to their body rather than the therapist pushing the patient. The therapist should also consider the trauma that patients may have received from other healthcare professionals. By listening and believing the patient, physical therapists can create a more impactful therapeutic relationship that will hopefully allow the patient to trust their clinician and more easily progress toward goals.

My own personal Long COVID journey continues, but through lots of trial and error, I have continued to make meaningful gains in my activity tolerance and symptom management. My wins these days are not always in how many steps I took in a day or how many hours I was able to work that week. Sometimes, the wins come through advocating for accommodations for myself or recognizing my own limitations to avoid a setback. As physical therapists, we are in a great position to advocate for patient-centered care. Reframing our mindset beyond exercise prescription can be challenging, however; it is important in cases of energy-limiting conditions. By treating in the whole scope of practice, Physical Therapists can be effective and necessary members of a Long COVID treatment team.

If you would like more resources on how to effectively treat patients living with Long COVID, there are many free resources available at www.longcovid.physio.

Ted DeChane is a pediatric physical therapist practicing in Port Huron, Michigan. He is a founding member of Long COVID Physio and previously served as the communications chair for the international  organization focused on advocating for patient safety and clinician education. Ted is currently involved in APTA Michigan as the communications chair for the Pediatrics Special Interest Group.






  1. Carruthers BM, van de Sande MI, De Meirleir KL, Klimas NG, Broderick G, Mitchell T, et al. Myalgic encephalomyelitis: International Consensus Criteria. J Intern Med. 2011;270(4):327-38. https://www.ncbi.nlm.nih.gov/pubmed/21777306.
  2. 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.
  3. Davis H, Assaf G, McCorkell L, Wei H, Low R, Re'em Y, et al. Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact. medRxiv. 2020. https://www.medrxiv.org/content/10.1101/2020.12.24.20248802v2.
  4. Clinical management of COVID-19: living guideline, 18 August 2023. Geneva: World Health Organization; 2023 (WHO/2019-nCoV/Clinical/2022.2). Licence: CC BY-NC-SA 3.0 IGO.
  5. Cotler J, Holtzman C, Dudun C, Jason LA. A Brief Questionnaire to Assess Post-Exertional Malaise. Diagnostics (Basel). 2018;8(3):66. https://www.ncbi.nlm.nih.gov/pubmed/30208578.
  6. Jason LA, Brown M, Brown A, Evans M, Flores S, Grant-Holler E, et al. Energy Conservation/Envelope Theory Interventions to Help Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Fatigue. 2013;1(1-2):27-42.
  7. Ella, A. (2019, January 17). Decoding the 2-day Cardiopulmonary Exercise Test (CPET) in Chronic Fatigue Syndrome (ME/CFS) [web log]. Retrieved September 26, 2021, from https://www.healthrising.org/blog/2019/01/17/decoding-2-day-cpet-chronic-fatigue-syndrome/.


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