There is one area of ME/CFS treatment, which is agreed upon to be beneficial by all groups, working within the treatment of ME/CFS and living with ME/CFS, this is Pacing.
Pacing Activity is the method of balancing all activity, meaningful and essential between sufficient periods of rest. This may seem to be a common sense task. However, Pacing is quite the opposite of what we learn in life. “Doing mode” will no longer work for those suffering from the deliberating condition ME/CFS.
Pacing Activity was not given the spotlight within the current ME/CFS NICE Guidelines. However, ME/CFS patient surveys highlight this as a most helpful treatment. Check out the ME Association Patient Survey 2010. Pacing Activity comes in as the most helpful.
The potential for an individual to gain the most from this management style is to start this strategy as early as possible. Unfortunately during the very early stages of ME/CFS most individuals are not sure of their diagnosis and may push themselves past their limits frequently. Pacing is also very helpful throughout the duration of the illness and should be maintained until the person no longer feels the need to restrict activity.
Below is an excellent guide to Pacing published by “Action for ME”
The cardinal symptom of ME/CFS is Post Exertional Neuro-immune Exhaustion (PENE) or you may know it as Post Exertional Malaise (PEM). PENE is a reaction which defines ME/CFS from other chronically deliberating conditions, which incur severe fatigue/exhaustion as a symptom. It is crucial that those with ME/CFS learn to recognise PENE episodes and reduce the frequency.
This cardinal symptom is not just a severe increase in Exhaustion but an increase in a number of ME/CFS related symptoms. For example an increase in flu like symptoms, in joint or muscle pain, difficulty concentrating or other cognitive problems, sleeping many more hours than usual or an increase in insomnia.
PENE could be described as a systemic inflammatory response to only the slightest increase in activity. Bearing in mind an increase in activity for a ME/CFS affected individual may include spending a little extra time in front of the computer or simply getting dressed without resting.
Each individual will be different with regard to levels of activity which bring on an episode of PENE. And onset of PENE will certainly differ for each individual, as one ME/CFS affected individual may have an episode of PENE only hours after increased activity, while another may not be affected until days later.
The main focus of Pacing is to reduce episodes of PENE. To reduce this inflammatory response is to switch from a dis-ease state into a state where the body has a chance to start the healing process. To do this a person with ME/CFS will first need to find an Activity Baseline.
An Activity Baseline is the amount of activity a person can do without causing an episode of PENE. And the level of activity that can be maintained whether you are having a good day or bad day regarding the many ME/CFS symptoms you may suffer.
When an individual finds their Activity Baseline and remains consistently within that set activity amount PENE episodes may become less frequent and less severe. After maintaining a Baseline for a considerable length of time without PENE episodes, a person can then try to increase activity; small amounts over long periods is best.
Eventually a person may reach the stage when PENE episodes are controlled completely and only occur, when life throws a curve ball. However, this individual may now be living within a very restricted amount of activity. Unable to more forward for fear of returning to repeated PENE episodes and deterioration in their overall health.
My advice at this stage is to give yourself the occasional test. This could include a very small amount of physical exercise to increase stamina. I would not attempt this without keeping a record of activity and symptoms including PENE episodes.
The ME Diary smart phone application has been specifically designed to help a person find their Activity Baseline as quickly as possible. We have included PENE as a cardinal symptom to be monitored throughout each diary cycle to help an individual spot these episodes.
The ME Diary will calculate an Activity Baseline for you depending upon your estimated levels of function. Diary cycles can be archived and individual histories can be correlated over time to estimate an increase in activity safely and carefully.