Living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) or long COVID can present significant challenges that affect physical and cognitive well-being.
These debilitating conditions can leave people unable to function normally due to fatigue, impaired cognition, disrupted sleep, and increased pain.
ME/CFS is characterized by a unique condition called post-exertional malaise (PEM), sometimes called post-exertional symptom exacerbation (PESE). Even minor physical or mental exertion can worsen symptoms and decrease overall functioning.
A subset of people with Long COVID also experience PEM/PESE.
Post-viral fatigue is part of the normal healing process after an acute viral infection. Some people with COVID recover quickly, whereas others take longer, but eventually, they recover. Others may not recover and develop ME/CFS.
We distinguish between post-viral fatigue and delayed worsening of symptoms after exertion (e.g., PEM/PESE). Post-viral fatigue typically occurs in direct response to exertion, leading to increasingly punishing fatigue with additional effort. In PEM/PESE, there is a delay in exertional crashes, sometimes up to 24-48 hours later. This delay makes it easy to overshoot activities and experience a crash characterized by worsening symptoms.
Luckily, with the correct knowledge and support, you can take steps to understand PEM/PESE and improve your quality of life.
This blog explores practical strategies for managing ME/CFS and long COVID.
Avoid Graded Exercise Therapy
A commonly recommended treatment for ME/CFS and long COVID is graded exercise therapy (GET).
However, recent research has shown that GET harms people with ME/CFS and a large subset of people with long COVID, especially those who meet the criteria for ME/CFS.
GET is based on the mistaken assumption that the fatigue and disability experienced in ME/CFS and long COVID are caused by a lack of physical activity and deconditioning. GET involves incrementally increasing exercise intensity and duration to improve aerobic efficiency – a concept that can be applied safely to other diseases.
The problem with GET is that the aerobic energy system is impaired in ME/CFS, and no amount of graded exercise will improve exercise tolerance or aerobic capacity. Our research shows that exercise worsens exercise intolerance in people with ME/CFS and some with long COVID, as shown by 2-day cardiopulmonary exercise testing (CPET).
Stop Rest Pace
“Stop Rest Pace: is a management strategy that balances activity and rest. In addition to rest periods, activities can be broken into shorter segments with frequent breaks in between.
Following the “Stop Rest Pace” strategy can help optimize energy usage without pushing yourself beyond your limits.
Learning the limits of your energy envelope can take time, but becoming aware of symptoms in response to activity can help people avoid, limit, or modify activities to prevent PEM/PESE.
Explore Disability Benefits
If you struggle to work due to your condition, seeking disability benefits may be worth exploring.
Applying for disability benefits can be complicated. Seeking guidance from an attorney specializing in chronic illnesses, such as ME/CFS and long COVID, can be helpful.
Schedule a two-day CPET evaluation
Two-day cardiopulmonary exercise testing (CPET) is a highly-precise non-invasive method for identifying the underlying causes of aerobic impairment and unexplained shortness of breath in individuals with multiple chronic conditions.
A two-day CPET can also help identify PEM/PESE.
CPET evaluates how effectively the body responds to exercise and the amount of oxygen consumed during physical exertion.
By providing this information, CPET assists doctors in determining the root cause of fatigue and the most appropriate treatment options.
CPET data are invaluable in disability cases because it provides a direct objective measure of a person’s functional ability, known as functional capacity.
Educate Yourself and Others
Do you want to gain valuable insights into the symptoms, potential triggers, and management strategies associated with ME/CFS and Long COVID?
Start by delving into the latest research, reading reputable sources, and connecting with knowledgeable healthcare professionals and patients.
Learning about these conditions empowers you to make informed decisions, effectively communicate with healthcare providers, and advocate for your well-being.
Workwell Foundation is an excellent resource for people with ME/CFS and long COVID. We share educational videos and helpful tips to improve quality of life and other valuable resources.
We also provide CPET and other testing services for individuals with disabling fatigue who cannot work. Click here to read more about CPET, or call us at 661-466-2545.