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Long COVID: What Makes Symptoms Worse

If you do a simple search on Long COVID and exercise, you will undoubtedly return mixed results that show exercise can help or worsen your Long COVID symptoms. So, what is the real answer?

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While exercise has always been promoted for good health, and with good reason, it is not always the best medicine for people recovering from a viral infection, such as COVID. In fact, pushing to recover from an acute COVID infection can trigger Long COVID, and continuing to exercise can often worsen Long COVID symptoms. But how does exercise play a role in worsening symptoms? How do you know when you can exercise? Is there a better way to manage symptoms without “pushing through?”

Outdated Treatment Recommendations May Cause More Harm

The debate on exercise for post-viral illness was highlighted over the last few years with the promotion of graded exercise therapy (GET) for people with myalgic encephalomyelitis/chronic fatigue syndrome and the worsening of their symptoms, sometimes over the long term.

The PACE trial claimed that graded exercise therapy, where patients pushed through symptoms to meet specific benchmarks for activity, significantly improved symptoms. After this trial, GET became the standard treatment protocol for ME/CFS patients in the UK, leading many to experience symptoms worsening and, in severe cases, becoming bedbound.

In 2016, a Freedom of Information Act request was granted and full access to the data of the PACE trial was published. This showed that there were flaws in the trial — including reducing requirements for recovery such that a percentage of patients were considered “recovered” at the start of the trial. This new data showed that GET did not provide significant improvements and, by 2021, the use of GET was no longer recommended for those with ME/CFS in the UK — these recommendations had been removed from CDC recommendations years before. Unfortunately, by this time the damage was already done, with many physicians continuing to promote GET as the treatment standard.

GET and Long COVID

The main diagnostic criterion for ME/CFS is called post-exertional malaise (PEM). This refers to the worsening of symptoms after physical, mental, or emotional exertion. When those with PEM push past their energy envelope, such as with exercise, they experience symptoms worsening, often leaving them bedbound for days or longer.

So, what does this have to do with Long COVID? Many with Long COVID are experiencing this same PEM, and nearly 50% of people with Long COVID are meeting the diagnostic criteria for ME/CFS. For these Long COVID patients, exertion causes symptoms to worsen or new symptoms to develop. While researchers have identified this Long COVID-associated PEM, many physicians continue to follow the old recommendations of exercise for recovery instead of the recommended pacing now standard for both ME/CFS and Long COVID.

In fact, a recent article in the International Journal of Environmental Research and Public Health shared, “While pacing is recommended to individuals with Long COVID, it was only the 4th most recommended strategy by healthcare providers. In contrast, GET was the 2nd most recommended strategy. The NICE guidelines on CFS have recently been updated and no longer recommended GET due to its potential to worsen symptoms. Given GET may also worsen Long COVID symptoms, participants are potentially receiving harmful recommendations from healthcare providers about how to be physically active.”

Unfortunately, previously false information from the PACE trial continues to contribute to poor healthcare guidance and symptom worsening not only for those with ME/CFS but also for those fighting Long COVID.

Post-Exertional Malaise (PEM) and Post-Exertional Symptom Exacerbation (PESE)

The definition of post-exertional malaise (PEM), also known as post-exertional symptom exacerbation (PESE) or post-exertional neuroimmune exhaustion (PENE), is the often-delayed worsening of symptoms after minimal physical, mental, or emotional activity. These symptoms can include debilitating fatigue, body pain, muscle weakness, and cognitive dysfunction. Symptoms often appear 24 hours after physical or mental activity, but the symptoms are not in proportion to the activity. For example, you may feel good today and decide to go for a walk around the block. You feel fine afterward but when the next day hits, you are overwhelmed by symptoms.

For a more in-depth look at PEM, click HERE.

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