Julie Hunter is no stranger to chronic illness. The personal trainer and chronic illness movement coach had lived with conditions like fibromyalgia and symptoms from a traumatic brain injury for years before she became sick with COVID-19 in August 2020.
But Hunter says that her bout with COVID caused her to develop a symptom she had never experienced before – post-exertional malaise – that profoundly impacted her ability to exercise.
“It took a while for it to become evident that I was dealing with post-exertional malaise because at first, I wasn’t pushing my body. I was resting and completely cutting out intentional movement,” says Hunter.
Five months after her acute COVID infection, Hunter began to experiment with reintegrating more activity. It was then that she began experiencing intense “crashes.”
“It wasn’t just the intense fatigue I was experiencing in the earlier months [with COVID],” Hunter says. “I was feeling intense flu-like symptoms and extreme pain, [even after just] walking for 15 minutes.”
Because of her history with chronic illness, Hunter says she was already familiar with the term “post-exertional malaise,” also known as post-exertional neuroimmune exhaustion or post-exertional symptom exacerbation (PESE), before receiving her diagnosis for myalgic encephalomyelitis, or ME/CFS, six months after her mild COVID-19 infection.
PESE is the hallmark symptom of ME/CFS, a highly disabling and still largely misunderstood complex multi-system chronic illness often triggered by a viral or bacterial infection. PESE affects people differently but is generally defined as the worsening of symptoms after even minor physical or mental activity. These symptoms vary person to person but often include muscle and joint pain, sleep disturbances, migraine, nausea, brain fog and other flu-like symptoms that can arise anywhere from 12 to 48 hours after exertion and last hours to months at a time.
Although exact numbers are unknown, a recent study indicated that 58 per cent of long COVID patients surveyed met the scoring threshold for ME/CFS.
For those with long COVID and PESE, it’s still unclear when – or if – they will fully recover.
“We need more data,” says Rosemary Twomey, a researcher who has studied PESE in long COVID patients. “Many patients have been managing long COVID for more than two years at this stage. Many have seen some improvement over time … However, there are fewer reports of complete resolution of symptoms, though these do exist.”
Around the same time Hunter was diagnosed with ME/CFS, she created the Instagram account “Movement with ME” to coach others on how to manage their symptoms and safely incorporate new levels of activity.
“I saw [people with ME/CFS and long COVID] pushing themselves to exercise. They were crashing and didn’t really understand why,” says Hunter. “I knew the severity of payback that exercise could cause and wanted to get the message out there that exercise can be incredibly detrimental to recovery. But there are also safe ways to move your body.”
But knowing how much movement is safe and when to scale activity up or down can be challenging for individuals with PESE, Hunter says. “There’s a very fine line between what’s beneficial and what’s harmful.”
For many, too much activity can cause symptoms to worsen and lead to significant and disabling setbacks. Long before the COVID-19 pandemic, a technique known as “graduated exercise therapy” (GET) was a commonly recommended treatment for ME/CFS.
GET rests on the assumption that the fatigue and other symptoms associated with ME/CFS are due largely to deconditioning and encourages increased exercise that builds over time based on a fixed rate regardless of the presence of symptoms.
Research, however, has caught up to what those with ME/CFS have voiced for decades – that GET is harmful to patients with PESE.
Twomey says that though we still do not fully understand the exact physiological underpinnings of PESE, the condition is “very much real” and uncommon outside of ME/CFS and long COVID. “The important thing to note is there are biological underpinnings to [the illness], and these are under in-depth investigation.”
Through cardiopulmonary exercise testing (CPET), researchers have been able to distinguish between PESE and regular deconditioning. Following the first CPET, patients with PESE are unable to perform at a similar level 24 hours later; markers such as volume of oxygen consumed, workload and heart rate are all negatively impacted on the second CPET. In regular deconditioning, patients maintain performance between tests.
A 2019 survey of more than 4,000 ME/CFS patients found that GET was only beneficial for about 6 per cent of those surveyed; nearly 40 per cent suffered from worsened symptoms and more severe disability. The National Institute for Health and Care Excellence in the U.K. revoked its recommendation for clinical guidance for GET in 2021, after years of patient advocacy.
From GET to pacing
Despite the hesitation many ME/CFS and long COVID patients may feel toward integrating more movement into their lives, Hunter says there is a way to do so safely without the same debilitating pitfalls as GET.
One of the most common and effective strategies is a technique called “pacing;” a rehabilitation approach that balances rest and activities in daily life. “[Unlike with GET] we’re letting our body be our guide to tell us what we should be doing that day, or if we need more rest. We’re only increasing activity when we see positive improvements.”
Techniques generally involve first establishing limits, sometimes referred to as finding the “energy envelope,” finding strategies to break up activity through pacing, and gradually expanding those limits.
Hunter says she first recommends that anyone who has recently had COVID and suspects they’re dealing with PESE first observe a period of convalescence. “Get to the point where your symptoms are minimal at rest. You should lose some fitness and intentionally decondition in order to give your body space to heal.” This could take time, in some cases weeks to months.
Once symptoms are minimal at rest, Hunter recommends slowly resuming the activities patients need and want to do. “This is going to be different for every individual because some people have to work or take care of their kids.” Although it may be difficult for some to rest as much as they need to recover, Hunter says it’s important that patients listen to their bodies as much as possible and not push through symptoms. She suggests scheduling specific periods for rest each day. “You want to be proactive about rest and stop doing activities before you start to see signs of increased fatigue or feel other symptoms coming on.” Hunter says.
As one pacing guide highlights, activities that may have felt relaxing before, such as watching television or listening to music, can actually be draining for someone with long COVID or ME/CFS. For this reason, it’s important that rest periods take place in a quiet, non-stimulating environment.
“What we’re trying to do is find that sweet spot where we’re using some, but not all of our energy each day.”
Alexandra Rendely, a physical medicine and rehab physician with the University Health Network, has been working with long COVID patients through Toronto Rehab since early 2021. She says that when rehabilitating those with PESE, it’s important to factor in all ways energy can be spent.
“It’s not just physical activity, it’s also cognitive activity. Anything where you’re using your mind; social interaction, being with others in-person or making phone calls. Even having emotional reactions to things – all of those take energy,” says Rendely. “What we’re trying to do is find that sweet spot where we’re using some, but not all of our energy each day.”
But when is it safe to incorporate more movement? Hunter says that for her the signs were twofold. First, she says she found that exclusively resting was beginning to make her feel worse, rather than better. Second, Hunter says she began to “feel lighter.” “[Patients] should feel like a weighted blanket was lifted off them. They should feel more ease in how they walk around a room.”
The “50-per-cent” rule
It is not uncommon for people with ME/CFS to overestimate how much they can safely do in a day. To help gauge a safe amount of activity, Hunter recommends an approach sometimes called the “50-per-cent rule.”
“If you can’t [safely] do something twice then you should try not to do it at all if you don’t have to,” Hunter says. “Or you should figure out how to cut an activity up into smaller exertions over a longer period of time.” Another way to think about this is for patients to create a list of tasks they think they can accomplish in a day, and then aim to do just half.
To conserve energy, Rendely advises that patients assess what activities feel the most draining and see where they could make modifications. “Can they think of ways that they can change their posture, their positioning?” For example, sitting upright working at a desk will take more energy than doing the same work while lying in bed. Similarly, using a chair while showering or preparing food can also help conserve energy.
The same rule can apply to cognitive tasks. “Someone who finds reading difficult might find listening easier, for example. Someone else might find reading easier than watching something on a screen,” says Rendely.
Environmental factors can also drain energy. Busy or noisy environments like restaurants tend to consume more energy than quieter ones. Emotions like frustration and stress can consume more energy than feeling calmer. For some, socializing can be rejuvenating; doing so in moderation is essential to good mental health. But being in large groups may be more draining than visiting with one person at a time.
Heart-rate monitors and symptom logs
Keeping a symptom log and using a heart-rate monitor with a chest strap to measure heart rate and heart-rate variability can be helpful to look back on patterns, monitor improvements over time and steer clear of potential crashes, Hunter says.
Using their heart rate, patients can more clearly define safe levels of activity, particularly as symptoms fluctuate on a day-to-day basis. “The reason to use heart-rate monitoring during activity is because someone who has ME has a much lower anaerobic threshold than a healthy person,” says Hunter. The anaerobic threshold is the point during exercise when the body switches from aerobic to anaerobic metabolism and can be a way to understand the limitations imposed by PESE.
If tracking symptoms and heart rate starts to feel overwhelming, Hunter says there is no harm in listening to your body’s limits more instinctually.
Hunter says conserving energy used for basic activities to spend more intentionally will be the most beneficial. “By eliminating the unnecessary energy expenditure … you can cut back on the things that don’t matter as much and have more energy to invest in things that bring you joy,” says Hunter. “Those are the things that are really going to help facilitate your recovery. Going for a five-minute walk outside is going to be much more beneficial than walking around the house 10 times a day to refill a glass of water.”
Hunter still lives with chronic health issues triggered by COVID-19, but says she no longer experiences PESE, nor meets the diagnostic criteria for ME/CFS .
Rendely says the data from the Toronto Rehab program suggests that physiotherapy, occupational therapy, social work among other supports have “been very beneficial to the patient population.” But more resources are needed to support this growing patient group. “Even if the pandemic is technically declared over, we’re going to see patients for a long, long time that need post COVID rehab. There’s going to be many more people in our clinic for years to come.”
Rendely recommends that patients and physicians interested in learning more about how to manage PESE, visit the following resources: