ME/CFS (chronic fatigue syndrome) AND PACING
THE GREAT EQUALIZER FOR ME/CFS SYMPTOMS AND POST-EXERTIONAL SYMPTOM EXACERBATION
If post-exertional symptom exacerbation is the wildly out-of-control, unpredictable hallmark symptom of ME CFS then pacing is the management tool that can tame and fence it in. First developed and used in the setting of chronic pain syndromes in the late 1970s, a more fitting and ME-adapted definition was described by Dr Melvin Ramsey in the 1980s and adopted by UK health psychologist Ellen Goudsmit in 1989. Goudsmidt began using forms of the approach with her patients who had post viral syndromes and were struggling with how to deal with still staying active but having to then face the relapsing tendencies of the disease.
Meanwhile psychologist Leonard Jason of DePaul University in Chicago introduced the energy envelope theory in the 1990s that dealt with energy conservation. Over the years they used an implementation of pacing as a comprehensive form of symptom management and prevention of post-exertional symptom exacerbation that has gradually been adopted by a number of expert ME CFS research and treatment clinicians as Goudsmit, Jason, and others have continued to build on their initial research and in the process has also been intensely promoted by most all ME CFS advocacy groups as a means of dealing with the illness.
The basics of pacing revolve around the understanding that each individual with ME CFS is going to have a generally different level of energy availability on a daily basis due to the effects of ME CFS on the energy metabolism (please visit the page on ME CFS and PEM). This amount of energy can be affected by a number of different variables, generally beginning with the levels of symptom exacerbation experienced by the individual to begin with.
This could be a consequence of exertional activities the day before, how well or not well his or her symptoms of ME CFS are controlled at the current time, and whether or not that person has been able to recover any amount of energy that was spent the day before. Continuing to tax the already fragile energy metabolism state and those with MECFS will continue to cause crashes, making the individual sicker, putting them in bed at worst and at best making it far more difficult for them to tolerate productive activities.
The individual may rest for several days allowing the body system to replenish some of the needed energy in the cells, and then the individual may get out of bed and immediately tackle too many things, putting them back in bed again. This is called the push-crash cycle. Over time this can worsen ME CFS when the constant exacerbation of illness symptoms continues to damage the already strained and impaired aerobic energy production system.
Pacing has been developed to reduce or eliminate as much as possible these large fluctuations in the core and secondary symptoms of ME CFS that result from the push-crash cycle thus allowing them to react to the amount of available energy they may have for a set of tasks on a given day in a way that best manages that available potential energy. This in turn allows the individual to live at not only a much more sensible and predictable set of baseline symptoms so they can live with those symptoms better, but also participate in more enjoyable activities, and prevent the illness baseline from moving in the wrong direction.
If done properly, pacing in some individuals can move the illness baseline in a positive direction so they become less sick and more able to do activities that they have not done in a while. In everyone who attempts to use it, pacing is meant to about the young help reduce some of the core symptoms of ME CFS to the point to where they're using their available metabolic energy in the most efficient manner possible and having less issues with those core symptoms. This can greatly improve quality of life and even increase some of the activities that they can accomplish. This along with the direct treatment of core and secondary symptoms on top, can lead to the most efficient management of ME CFS.
IMPLEMENTATION
Pacing is not only a management strategy but can include every kind of activity modification that may allow you to more easily an efficiently manage your body's available energy levels and even help increase those levels by allowing your body to capture some of the fragile energy that is produced for storage in cells and therefore lengthen your energy envelope. This is done by breaking tasks and life events down into more and more manageable components and constantly monitoring and assessing how a person feels physically and emotionally with respect to their ME CFS symptoms and their post-exertional symptom exacerbation level. This will give you an idea of what your energy envelope is. Trial and error is involved especially at first. Break tasks down into smaller portions and break those tasks down into even smaller portions.
Carry objects that weigh much less than you did before the illness and see if your body tolerates them. If there is any sense at all that you are not going to be able to lift a certain object without your body having an increase in any of your core symptoms, do not move the object, or immediately put it down. Build in periods of rest between various activities and always stop as soon as there is any feeling of exacerbation of symptoms. A good example of this may be an hour of rest for every 1/2 hour of continuous activity. If even a half hour of activity is too much, then cut it in half. Stagger various activities so that you don't do them all at one time or in one day or keep specific muscle groups from wearing out by switching from one task to a different one before those muscles wear out.
Once you feel your body has reached the threshold of no longer being able to do any more activity, then stop for the day and reattempt the next day. If you can’t do that activity the next day then attempt it a few more days down the road. Always be prepared to do less than expected and do not hesitate to drop activities or change plans in response to development of post-exertional symptom exacerbation. If upon attempting any activity you are finding that you are getting an increase in your symptoms and cannot even complete those menial tasks, drop what you're doing and reattempt or reassess after a period of rest and see where you are.
Gradually increase your attempts at various activities every few days to see what your tolerance level is and how much your body may be able to tolerate at one time. All of this can give you a great starting point with regard to what activities you can attempt to accomplish and still manage your symptoms while doing so. Take inventory of what you can and cannot do and then use this to establish tolerance levels. If attempting new activities, do very slowly and deliberately, always leave room for error, and be willing to abort the activity if your body does not want to cooperate in any way, shape, or form. Practice daily.
Always be willing to push off what you know to be an already tolerable task to another day if you have reached the threshold of activity for that day. Try to avoid as much as possible any activities that are in a threshold that you find you absolutely cannot tolerate. This will create your baseline. Stay within your baseline and continue to do any activities as tolerated, building in constant periods of rest. If you are going to be participating in a social event or going on a doctor's visit or a trip of any kind, it can help to get extra rest beforehand and build in rest days afterward. Limit socializing with friends to by letting them know that you are exhausted and it’s time to leave or plan an outing to last a certain period of time and then gracefully leave when that time approaches.
Pacing is not only a disciplined strategy but can include every kind of activity modification or avoidance that may allow you to function better and more easily and efficiently manage your body's available energy levels and even help increase those levels by allowing your body to capture some of the fragile energy that is produced for storage in cells and therefore lengthen your energy envelope. This can be done by enlisting others’ help and assistance in accomplishing some of the more strenuous tasks that you can no longer effectively complete.
Things such as having a grocery delivery service bring your food into your home if you can afford that, hiring a cleaner to maintain those types of tasks around the house, or buying a shower chair so that you don't have to stand up in the shower all the time can all be things that can cut your levels of exertion down by more than half even if you are using pacing to do these things.
It is not always possible, however, to necessarily find people who want to help out someone who has ME CFS and understands the illness and why the individual can't do certain things they think that person should be able to accomplish easily given the age and the way the individual looks physically from the outside. This in and of itself can make the search process for someone to accomplish this to be even more exertional and adding insult to injury. A person may also be on a fixed income or have been denied disability so many times that they are not in a situation where they have an income to pay for these kinds of services. In that case the only advice I can offer, unfortunately, is to do the best you can by using the tools of pacing. Combining this with the strategies in the above paragraphs can lead to an even more substantial improvement.
BUILDING AN ILLNESS BASELINE
Once you've established a general idea for yourself what your daily and weekly energy envelope patterns are with respect to the activities that you can most tolerate on any given day, you can then try to establish for yourself an actual ME CFS illness baseline. This can help you better understand the severity level of your illness and therefore better determine what activities you're going to be able to tolerate and what may cause you trouble.
Proper understanding of the use of pacing to maintain illness baseline and not worsen ME CFS through overexertion further exacerbating disease symptoms and damaging the body's energy metabolism can require a foundational understanding of this illness baseline. In order to find out exactly where a person is with regard to baseline functioning, it can be helpful to first begin to develop a sense of how much activity that person can achieve on a good day without experiencing a post-exertional crash. It can be helpful for that person to keep an activity diary for at least 1- 3 weeks to get a good understanding of what activities and activity patterns may cause symptom exacerbation and what activities are better tolerated.
This diary also can serve as a record of what kinds of activities were done on the day before giving one a sense of how previous activity levels may have affected them. A person can then compare the activities they have been achieving or been able to achieve on most days compared to what they have typically been able to do on their best days.
It may be helpful to chart this as well if it isn't too exertional. This can conceptually give a person an idea of how much they can achieve if they are able to pace themselves in a proper manner and then try to adjust their activities so they can have enough energy on a daily basis to achieve those particular things. It can also give them a better idea of when they are falling into post-exertional symptom exacerbation. It may take longer than just a few weeks for an understanding of this baseline to occur and so repeating the process may be appropriate.
NOT A CURE
As in all things with ME CFS, pacing is not a core treatment or cure. Some physicians and some websites may claim or state that this is a treatment for ME CFS, but this is generalized promotional language and not specific to rebounding to pre-illness levels of activity, except in rare cases. Pacing is a management tool and is used to help not only maintain a better control of the hallmark symptom of post-exertional malaise in ME CFS but also to enhance the quality of life in a person who has it by limiting or minimizing ME CFS symptoms to their baseline level and preventing the worsening of the illness by reducing the risk of further damaging the energy systems that are taxed by the condition.
Pacing also does not have an endpoint and is constantly ongoing as the physical symptoms of the illness continue to evolve and the individual's life continues to evolve with it; thereby, requiring different types of energy to achieve newly required outcomes. With practice one can get a more finite sense of where one can work with one’s body to achieve better quality of life and participate in more enjoyable activities and achieve prioritized tasks. This can increase one's confidence level and their ability to cope with the illness and give them a better feeling of control over their illness situation. There are no guarantees - but there is a lot of potential for a person with ME CFS to improve their lives using pacing. It is currently the most effective and cheaply available coping mechanism for ME CFS and those who are devastated by it.
Of note, a number of practitioners and those with diagnosed ME CFS have recently begun to use heart rate monitor in the form of Fitbit watches to stringently and specifically keep stay ahead of their post-exertional malaise using heart rate readings from the watch. While this can be very effective, I will not go into detail with it here as this is primarily an introductory page on the basics of pacing and its concepts and those kinds of things are a bit more advanced. Furthermore, the author, Scott Schneider for example - would not benefit from such measures because he would be unable to tolerate the physical exertion required to constantly hold his arm up, glance at the tiny watch, hit buttons, download data, or place any sensors around the arm area.
In addition, to get accurate measurements generally requires an expensive watch and these generally cost in the range of 300 to $500, and many in the ME CFS community are indigent or don't have a great deal of extra money to spend on a watch. This website, though it is here for purposes of informing the public, also caters to many of those who are struggling with ME CFS, particularly financially, and this is not something that they may necessarily be able to afford to do. Thus, I will refrain from going into this in detail, however, if anybody reading this wants to check out how they may monitor their post-exertional malaise and pacing using a heart rate monitor on a Fitbit watch here is a link:
HERE IS SOME MEDICAL EVIDENCE AND SCIENCE BEHIND PACING FOR ME/CFS (CHRONIC FATIGUE SYNDROME)
https://me-pedia.org/wiki/Pacing#cite_note-1
https://pubmed.ncbi.nlm.nih.gov/22181560/
https://pubmed.ncbi.nlm.nih.gov/18578185/
https://www.pnas.org/doi/10.1073/pnas.2302738120
PACING - IT DOES AN ME/CFS BODY GOOD! (Photo courtesy of ME/Action)