Although there are no approved, effective drugs for ME/CFS, there is one widely helpful technique that patients can use to avoid worsening symptoms:
Pace your physical and cognitive activities!
When an ME/CFS patient exerts themself, either physically or cognitively, they suffer the dreaded Post-Exertional Malaise (PEM), also known as Post-Exertional Symptom Exacerbation (PESE).
Since the harmful effects of PEM/PESE sometimes don’t occur until two days after a specific episode of exertion, it is very easy for patients to overlook the direct connection between the initial exertion and the delayed payback of PEM/PESE.
Many patients are in a state of denial regarding their symptoms. They have to be, in order to try to live their lives as they have become accustomed, and to try to meet the ordinary responsibilities of work and family.
—Staci Stevens, Exercise Physiologist
Since pacing is such a helpful technique for so many patients, different patients have developed different ways to pace.
The Energy Envelope Theory is founded on the idea that ME/CFS patients have a kind of physiological ‘safety’ envelope. It’s different for each person and is largely defined by how much activity you can safely engage in.
Partaking in too much cognitive or physical activity may push you outside that envelope, triggering PEM/PESE. Staying within that envelope, on the other hand, will hopefully give your body the opportunity to help heal itself — or at least not suffer further damage.
One way to try to determine your own personal envelope is by recording your activities and symptoms over time, in order to determine which activities triggers which episode of PEM/PESE. The easiest way to do this is by using an activity log.
Then comes the hard part. Once you have a good idea of how your activities trigger your PEM/PESE, you must then change your daily behavior in order to accept your activity limits.
The process of accepting limits and learning to live a different kind of life usually takes several years.
—Bruce Campbell, author
The Spoon Theory is a way of explaining the peculiar disability of ME/CFS to others. Many people will observe an ME/CFS patient perform an activity without any problem and think “this person can’t be disabled — I just watched them perform that activity without any problem!”
The Spoon Theory says to imagine that a patient has a limited amount of “spoons” for the day. Each activity that the patient performs in that day uses up a certain amount of the patient’s “spoons”. When the patient runs out of “spoons”, then they can no longer perform any activities for the rest of the day.
Then, when other people observe an ME/CFS patient perform an activity without any problem, the patient can inform them that they are using up their “spoons” in order to be able to perform the activity without any apparent problem. However, now that the “spoons” are used up, the patient will be unable to perform that same activity again.
Heart Rate Monitor: Some patients wear a heart rate monitor and stop their exertion when their heart rate rises too much. Here’s one discussion from our discussion forum about pacing this way, with a heart rate monitor:
Many people with ME/cfs or Long Covid find that monitoring their Heart Rate (HR) or Heart Rate Variability (HRV) helps them with pacing their activities, tracking their symptoms, or avoiding Post-Exerional Malaise (PEM). These days there are more options than ever for devices that measure HR or HRV. But, since technology is improving fast, specific recommendations can become outdated quickly…
Post-Exertional Malaise (PEM) and Post-Exertional Symptom Exacerbation (PESE):
What’s the difference between “Post-Exertional Malaise” (PEM) and “Post-Exertional Symptom Exacerbation” (PESE)?
Exercise intolerance and PEM/PESE:
Is “Exercise Intolerance” the same thing as “Exertion Intolerance”? Are they related, but different? And what about PEM/PESE?