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Experts Predict Half of Long COVID Patients Have ME/CFS

Long COVID Sufferers Find New Ways to Cope with Chronic Fatigue

It’s no secret that long COVID has imposed drastic consequences—not just in the personal lives of millions of Americans, but the U.S. workforce and society as a whole.

Sadly, many people who suffered a COVID-19 infection never made a full recovery, leading them to develop a post-viral condition known as long COVID. The condition entails a vast range of confusing and often debilitating symptoms, including:

  • Fever
  • Brain fog
  • Chronic fatigue
  • Digestive issues
  • Respiratory issues
  • Sleep disturbances
  • Joint and muscle pain
  • Difficulty concentrating
  • Blood clots and vascular issues
  • Symptoms that worsen with mental or physical effort

Because the SARS-CoV-2 virus is still so new to the medical and scientific communities, and because long COVID symptoms can persist in affected individuals for years, it's difficult to know what the future holds for long COVID patients (often referred to as “long-haulers”), especially regarding how long their condition will last.

As more and more long-haulers are forced to confront the impossible challenge of managing their health while keeping themselves and their families financially afloat, a lot of patients are on the hunt for new and improved ways to cope with their symptoms.

Experts Predict That 50% of Long COVID Patients Have ME/CFS

Chronic fatigue is a common and debilitating effect of long COVID. For many long-haulers, chronic fatigue continues to hold them back from their everyday lives and jobs, often leading these individuals to feel frozen in time while the rest of the world continues to move on after the pandemic.

One long-hauler commented that the chronic fatigue of long COVID is "like dragging your body through wet cement." Another describes chronic fatigue as "knowing that simple tasks, like showering or cooking dinner, will be exhausting." For some, making an effort to return to normal routines after a COVID-19 infection can land them in the emergency room.

The rise of long COVID has renewed attention on another post-viral condition that is often overlooked in the medical community: myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

ME/CFS is a chronic and disabling illness in which patients suffer from incapacitating fatigue that inhibits their daily functioning and does not improve with sleep and rest. While there is no known cure for ME/CFS, affected individuals can incorporate a “complicated lifestyle change” to make symptoms more tolerable.

How Can “Pacing” Help Patients Manage Post-Viral Conditions?

One strategy that can help sufferers of both ME/CFS and long COVID manage chronic fatigue is pacing.

Pacing is defined as an “activity management” strategy that limits daily activities, reduces energy expenditure, and tracks symptoms. Examples include:

  • Creating “snack stations” in the house to reduce traveling distance
  • Scaling back extracurricular or social activities
  • Reducing work hours

While pacing and similar strategies can have an overall positive effect on ME/CFS and long COVID patients, the actual implementation of this strategy can be challenging and even discouraging for many people, as it requires individuals to cut back on various tasks that we often take for granted, such as picking up a child from daycare or taking a shower The adjustment can be especially difficult for those who once led busy, active, and/or social lives prior to their condition.

However, pacing has proven to be an effective means of coping for many long-haulers and ME/CFS patients, as it can help these individuals return to some semblance of normalcy in their lives.

Jaime Seltzer, director of the nonprofit organization #MEAction, describes pacing as “being active when you’re able, and resting when you’re tired, rather than pushing through symptoms.” This can be especially beneficial for patients suffering from post-exertional malaise, the worsening of symptoms with mental or physical effort.

While pacing has been useful for many patients, keep in mind that additional research is needed to gain a more definitive answer regarding the effectiveness of pacing as a legitimate treatment. While pacing helps some people, others may benefit from other means of recovery, such as cognitive behavioral therapy or medication.

Challenges of Pacing

The road to recovery is never linear. One downside of pacing is that it requires people to expand their perspective beyond the traditional concept of recovery. While the gradual restoration of strength and stamina over time is the central idea behind most recovery plans, pacing basically requires an individual to do the opposite.

For many ME/CFS patients, a traditional recovery entailing a gradual incline in effort and energy can result in a debilitating “crash” that worsens symptoms rather than alleviate them. Even minor bouts of activity can result in a crash, making pacing a worthwhile option to consider for some individuals.

Studies show that both long COVID and ME/CFS patients don’t respond to physical exertion in the same ways as healthy individuals; rather, these individuals are impaired by a dysfunctional energy system.

While the body’s aerobic system is meant to provide long-term energy through oxygenated blood flow, the bodies of long COVID and ME/CFS patients experience energy shortages more easily and take longer to recover. Moreover, pushing the body beyond this threshold can result in permanently reduced abilities in the future.

How to Incorporate Pacing to Manage Chronic Fatigue

Experts warn that pacing is an extensive process that can take months or years to learn and utilize effectively. It can also take time to determine the correct activity level to reduce, as this varies from patient to patient.

To successfully incorporate pacing into your normal routines, here are some general tips you can follow:

  1. Use a blank weekly planner or scheduling app to track your daily activities.
  2. Delegate half of your waking hours to “rest time.” Tasks during rest time cannot require any physical or mental exertion, such as using a smartphone or reading a book.
  3. Schedule more urgent “must-do” activities and plan small breaks between each one. You may benefit from resting between tasks like eating breakfast or bathing.
  4. If there is additional time available, add activities that you’d like to do.
  5. Avoid scheduling activities that may result in an increased heart rate.
  6. Maintain a daily symptom log to determine if the pacing level is effective or needs to be modified. Consider using a color-coded system, such as green for good days, yellow for in-between days, and red for bad days.
  7. Continue cutting back activities until you notice your symptoms improve.

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