Pacing is Different for MECFS
I talk about the importance of pacing a lot on this page and I wanted to make a post clarifying that pacing for MECFS is quite different and much stricter than pacing as a general chronic illness coping strategy.
Let's talk about why...
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Pacing for MECFS Has Different
-Limits
-Meaning of Baseline
-Consequences
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Limits
For most chronic illnesses pacing limits are set by what you can do on a given day. You should pace yourself so you don't run out of energy or "spoons" by the evening.
In contrast, pacing for ME requires leaving enough energy to avoid triggering Post Exertional Malaise (PEM). A general rule of thumb is 50% of what you could do on a given day as a starting limit. This is much stricter than simply sticking to what you can do. You must stick to what you can do without triggering PEM.
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Meaning of Baseline
In normal pacing baseline refers to what someone can do day after day when they are not in a crash. The baseline defines a set of repeatable limits to live by. While someone may be able to slightly exceed their baseline temporarily they can not do so by much.
In MECFS pacing baseline refers to being out of PEM something that can take weeks of pacing to achieve. At baseline someone with MECFS has the potential to do far more than they are doing in their day to day life possible 2 or 3 times more. That is because baseline to someone with MECFS will not be what sets their limits. Limits and baseline are two seperate ideas with limits being much stricter in order to stop deterioration of the baseline.
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Consequences
The biggest difference in pacing for MECFS vs other chronic illnesses is consequences. While pacing in all chronic illnesses is designed to prevent a flare-up and exacerbation of symptoms in most illnesses failure to pace has an immediate consequence that will be lived through and then moved on. In contrast, in MECFSthe failure to pace causes PEM that has a disproportionately large impact on not just immediate symptoms and a potential crash or flare but long-term deterioration of the baseline. These consequences also begin at a much lower threshold which is why limits for pacing in ME patients must be set much lower than in other chronic illnesses.
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Conclusion
While pacing is an important strategy for all chronic illnesses, it is important to remember that pacing for MECFS patients is a much stricter and more important aspect of treatment. Pacing for MECFS is not just about minimizing symptoms, it is a necessary intervention to prevent permanent deterioration of quality of life. Pacing for MECFS requires limits that are far stricter than simply staying within what you can do in a day. Instead, limits must be set in order to avoid PEM which can require significantly more reduction in activity than simply stopping when you receive bodily feedback like pain or exhaustion.
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Helpful Tips for MECFS Pacing
-Track your HRV or resting heart rate to know when you are in PEM
-Start with a drastic cut of 50% or more to activity until you come out of PEM. Then slowly build back up so you can find where your activity begins to trigger PEM.
-Consider using heart rate monitors and timers to accurately track how much exertion you are doing.
-Remember that PEM can occur up to 48 (or sometimes more) hours after a triggering event.
-For those using heart rate monitors a starting formula to keep your heart rate under is (220-age)*0.6 The multiplier of 0.6 can be changed out for 0.7 in mild ME or 0.5 in severe ME. Another common starting threshold is 100bpm.-Track your HRV or resting heart rate to know when you are in PEM
-Start with a drastic cut of 50% or more to activity until you come out of PEM. Then slowly build back up so you can find where your activity begins to trigger PEM.
-Consider using heart rate monitors and timers to accurately track how much exertion you are doing.
-Remember that PEM can occur up to 48 (or sometimes more) hours after a triggering event.
-For those using heart rate monitors a starting formula to keep your heart rate under is (220-age)*0.6 The multiplier of 0.6 can be changed out for 0.7 in mild ME or 0.5 in severe ME. Another common starting threshold is 100bpm.
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Pacing is the only treatment we know to prevent the progression of myalgic encephalomyelitis.
I realize pacing is a term I use often on this page but it is important to note that pacing the context of MECFS is much stricter and more important than in other chronic illnesses. That is not to diminish the importance of pacing as a management strategy in diseases like fibromyalgia, MS, EDS, lupus, and so forth but simply to make sure that persons with ME understand the importance of getting pacing information from someone well informed about Post-Exterional Malaise or PEM as well as ME in general.
A note: If you don't have an MECFS diagnosis but find the pacing to be very important to avoid a "crash" or "flare" of some sort 24-48 hours after the activity you may suffer from MECFS *in addition* to whatever other diagnoses you have. I recommend checking out my post on the ICC diagnostic criteria.
Pacing prevents Severe ME and severe disability and is incredibly important. It is as important as taking medication in MS or doing chemo for cancer it prevents the progression of severe neurological disease. Pacing in ME can also be debilitating as those treatments reduce someone's functional ability by as much as 50%. That, however, can be necessary because if you do not self-restrict through pacing and continue to crash you can lose that 50% functioning permanently as has happened to so many persons with severe ME. So please seek out proper guidance for pacing through resources such as...
-Workwell Foundation
-MEAction
-Emerge
-Mayo Clinic Guidelines
-Open Medicine Foundation
-Physios for ME
Do not take guidance on pacing from any physical therapist who still advocates for GET (graded exercise therapy). Please also exercise extreme caution around "pacing up" as this is often just a disguise for GET which permanently harms up to 80% of patients who partake in it. In general, it is always better safe than sorry when it comes to pacing and better to go low and slow than to try anything that could trigger a relapse. Pacing for ME should be seen as a management strategy and treatment preventing progression, not a cure. You should not expect to be able to increase your activity over time.*
*ME is a variable illness so some people will see improvement over time and some people will see a decline over time. While pushing and not pacing can lead to decline we do not know for sure what are the variables that lead to improvement and do know that spontaneous remission is a large variable so be wary of any "miracle cures" for this incurable disease. See "Why so many people online have 'cured' MECFS" for a bigger explanation of how spontaneous remission causes issues for our community.
