# Pacing Pacing is the most important skill you can learn to manage your ME/CFS symptoms. In one survey looking at over 150 different treatments for ME/CFS, pacing was by far the most helpful treatment. It is better than any medication, supplement or manual treatment asked about. Pacing is the practice of spending your energy in small enough chunks to avoid post exertional malaise (PEM) by staying within your energy envelope. Let's break that down. # Exertion Exertion is any action, situation or illness that places stress on the body. Exertion may be: **Physical**: Any task that uses muscles to move or support the body (eg. walking, running, jumping, lifting, bending, or even just sitting in an unsupported position) **Cognitive**: Activities that take concentration or willpower, including reading, studying, and desk work **Emotional**: Any strong emotion can exert stress on the body, primarily negative emotions such as fear, anger, sadness, or empathy / emotional pain **Orthostatic**: Standing or sitting upright where the body must work harder to deliver blood to the brain **Sensory**: Strong or overwhelming sensory signals that the brain may struggle to process, including loud noises, bright lights, and focusing on screens **Environmental**: Stressors from the environment such as temperature extremes or allergen exposure **Physiologic**: Stress associated with involuntary bodily processes such as low blood sugar, histamine release, sleep deprivation or menstrual cycles # Post-exertional Malaise Post-exertional malaise (PEM) is the hallmark symptom of ME/CFS. It distinguishes ME/CFS from all other illnesses. While most symptoms of ME/CFS are "nonspecific" (ie. they can be found across a wide array of diseases), PEM is specific to ME/CFS and present in all cases of CFS. PEM is often referred to by patients as a "crash" or "flare." It consists of: - A worsening of symptoms (all symptoms, not just fatigue) - In response to exertion - Out of proportion to what would be expected - That may be immediate or delayed by 24-72 hours PEM creates the classic waxing/waning pattern of ME/CFS where symptoms fluctuate from day to day and week to week. However, some patients are in a constant state of PEM. When this happens, PEM may be difficult to identify and the patient may not have "good days" to create the waxing-waning patter typically seen. These patients are usually pushing constantly, trying to squeeze every bit of living they can out of their rapidly shrinking energy reserve. PEM lasts at least 24 hours and can last weeks or even cause a permanent reduction in baseline functioning. Science shows that PEM is a physiologic state where the body is unable to make energy efficiently. This change takes place at the cellular level and can be measured in muscle cells in a Petri dish. This is not a psychological state of depression or anxiety, though these emotional symptoms can come along with PEM. ## Honoring PEM When you don’t understand why PEM occurs, it is easy to want to ignore and mask it. The fatigue, brain fog or pain we experience severely limits our ability to live and enjoy life. But PEM is actually an important signal from our body that we can learn to listen to in order to promote healing. Imagine a child has fallen out of a tree and broken his arm. His primary concern will be pain in his arm. He will want the pain to go away above all else. But we understand that the pain is an important signal. If he was not experiencing pain he would continue to use the broken arm as normal and it would not be able to heal properly, if at all. The proper treatment for his broken arm is to help him honor the signals his body is giving him. We provide a splint or cast to immobilize the arm. This will not only take away his pain, it will give his body the prerequisites it needs to heal. PEM can be viewed like the pain of a broken bone. It is a signal sent by the body meant to induce a certain behavior that will allow the body to return to health. When the signals are heeded, the body turns down the volume of those signals and, over time, will be able to heal so that those signals are no longer necessary (assuming that it has the prerequisite support it needs to heal). Even when healing is not yet possible, avoiding PEM allows the patient to do more and live a better quality of life. In contrast, masking or ignoring those signals will cause the body to make those signals louder to get our attention and will lead to more symptoms over time. ## The Energy Envelope The energy envelope is the amount of exertion you can tolerate without inducing PEM. The size of the energy envelope varies from person to person and day by day. Staying within the energy envelope can be tricky because it is sometimes difficult to know when you have done too much. ## PEM Warning Signs Most people will find that they have symptoms that warn them of overexertion before they push themselves into PEM. Do you know what your PEM warning signs are? Here are a few I see often: - Fatigue - Weakness - Flushing / sweating - Shortness of breath - Rapid heart rate - Brain fog - Muscle tension - Unsteadiness ## Biofeedback If you cannot identify your warning signs or if you regularly blow past them, it can be helpful to get an outside source of feedback to help you identify your energy envelope threshold. My favorite tool for this is the Visible heart rate monitor and app which will assign you pace points to spend throughout the day. Several of my patients have found this to be accurate and helpful. Notice, however, that heart rate monitors cannot measure your cognitive, emotional or sensory exertion so you will still need to manage these yourself. # Rest Before learning to pace, you must learn how to [[Rest|actively and deliberately rest]] Resting when you have ME/CFS is totally different than resting when you have a healthy nervous system. Activities normally thought of as restful can actually cause exertion and PEM when you have ME/CFS. ## Criteria for Rest I recommend the following criteria be met in order for an activity to count as “rest” when you have ME/CFS: 1. **You are laying down** with feet at the level of the heart. This minimizes orthostatic exertion. 2. **You are still and muscles are completely relaxed.** You should not be needing to engage any muscle groups to hold up the head or maintain a comfortable position. Other than occasional repositions, you are still and the muscles are not needed to do any activity.  3. **Needs for food and water are met.** Snacks and drinks should be at the bedside in case you get hungry or thirsty.  4. **Needs for safety are met.** Your nervous system is as relaxed as possible. This is only possible if you don’t need to be looking out for the safety of yourself or others during rest time.  5. **The mind is either fully relaxed or softly engaged.** If your thoughts are racing or anxious this is not rest. You can use an audiobook or guided meditation to help keep your mind occupied. However, you should be relaxed enough that falling asleep is possible and encouraged. 6. **Sensory input is minimal.** Eyes are closed. The room is dark (or you are wearing a blindfold), quiet (or there is soft background noise) and a cool, comfortable temperature. As you can see, playing video games, watching TV and scrolling social media are not considered rest. Neither is knitting or coloring. This is because the emotional, sensory and physical exertion that accompany these activities can still induce PEM. ## Why is Criteria so Strict? The criteria for “rest” with ME/CFS is strict, and the effects of rest are twofold. First, it reduces exertion to zero (or as close to zero as possible). Second, it shifts the autonomic nervous system (ANS) into a state of rest and digest (a ventral vagal state). This state is necessary for healing. It can reduce the severity of PEM after exertion. It also sends necessary signals to the cells of the body to encourage salugenesis - the return to normal function after being in a state of shutdown. Without signals of safety from the ANS, the cells will remain in hibernation, minimizing mitochondrial functioning in order to survive a period of stress. ## Restful Activities My favorite rest activities are: [[Relaxation Techniques#Yoga Nidra|Yoga Nidra]] [[Relaxation Techniques#Trauma Release Exercises|Trauma Release Exercises]] [[Relaxation Techniques#Naps|Naps]] [[Relaxation Techniques#Cuddling|Listening to an audiobook, podcast or soft music]] [[Relaxation Techniques#Restful Entertainment|Listening to an audiobook, podcast or soft music]] [[Relaxation Techniques#Daydreaming and Visualization|Daydreaming and visualization]] [[Relaxation Techniques#Breathing Techniques|Breathing exercises]] [[Relaxation Techniques#Laying outside|Resting outside]] [[Relaxation Techniques#Progressive Muscle Relaxation|Progressive Muscle Relaxation]] [[Relaxation Techniques#Mindfulness Meditation|Mindfulness Meditation]] Prayer # Pacing Strategies ## Schedule Rest Restful activities should be done as much and often as possible. The more severe your ME/CFS, the more important these activities are. You will need to do them more when you are in PEM. They are best done throughout the day rather than all at once. For example, this is an approximation of what my day looked like during my latest flare as I was trying to reintroduce some work activities back into my day: 8 AM - Wake up. Eat breakfast. 9 AM - Rest. 10 AM - Gentle activity and snack. 11 AM - Rest. 12 PM - Lunch. 1 PM - Work. 1:30 PM - Rest 2 PM - Gentle activity and snack. 3 PM - Work 4 PM - Rest 5 PM - Gentle activity 6 PM - Dinner 7 PM - Gentle activity 8 PM - Gentle activity 9 PM - Rest and sleep Rest took place after work or longer periods of gentle activity (which would be things like watching TV or doing other sedentary activities). These were the times when I was feeling most fatigued and having the most brain fog. Activity was more common in the evening when I tended to have more energy. I avoided work in the morning when I felt the worst. Most of my rest periods were Yoga Nidra, usually ending in a nap. As I improved, rest periods became less frequent. I find it most important to rest at midday and a midday rest will be the last rest period to go as I am recovering, other than my nighttime Yoga Nidra as I fall asleep which I will still do, even when well, if I don’t think I will fall asleep quickly.  ## Break Tasks into Chunks If you need to cook breakfast, for example, it can be really helpful to do it in stages rather than all at once. Both orthostatic and physical exertion tend to respond well to frequent breaks which keep the heart rate down. Experiment with how long you can work, perhaps in 2-5 minute periods, before you need to lay down and close your eyes for a while. Pay attention to your PEM warning signs or use heart rate monitoring to guide your actions. ## Cut Activity in Half In order to get out of the push-crash cycle of PEM that many of us get trapped in, it becomes necessary to rest far more and do far less than we feel like we can do. A good rule of thumb is to start by reducing your activity by 50%. When 50% of activities are replaced by rest most people will find they are able to avoid PEM and maintain a stable baseline. After 2-4 weeks without PEM, most people find that their energy envelope widens and they can slowly start to reintroduce activity. The biggest challenge is to continue to do less as you start to have good days. It is common to rest, begin to feel better, and then do more and induce another episode of PEM. Activity must be kept limited, even on good days, to allow your body the rest it needs to heal. ## Let Go of Obligations It is common for patients with ME/CFS to tolerate fun activities better than they tolerate activities that are perceived as stressful, scary, boring or done out of obligation. How the nervous system perceives the activity will influence how easily it induces PEM. Therefore, I encourage you to let go of things you “should” do and hold on to activities you want to do because you find them inherently rewarding. Hanging out with friends, for example, often moves the ANS into rest and digest so that the exertion of socializing is not as draining as it would be socializing with a boss or coworker. There appears to be a subset of patients with ME/CFS who either become sick or stay sick in part due to feeling obligated to uphold certain standards set by themselves, their family, their community or their society. Deconstructing the beliefs telling you that you “have to” do something is a worthwhile use of your time. Speaking with a counselor about this issue can be helpful. Ideally, every activity you do during the day would be done with a sense of joy and gratitude. All other activities should be discarded. “The best way to choose what to keep and what to throw away is to take each item in one’s hand and ask: ‘Does this spark joy?’ If it does, keep it. If not, dispose of it. This is not only the simplest but also the most accurate yardstick by which to judge.” - Marie Kondo The ME/CFS patient will benefit from applying Marie Kondo’s advice to their activities. ## Minimize Screen time The sensory overload of screens is hard to overstate. They tend to give a sense that you are “resting” while keeping your nervous system in a state of fight, flight or overwhelm. ## Utilize Mobility and Sensory Aids Earplugs (like Loops), sunglasses and blindfolds are all examples of sensory aids that can reduce PEM by reducing sensory exertion. Many people with ME/CFS find mobility aids helpful as well. This might look like using a motorized shopping cart when you go Walmart to pick up a prescription. It might look like having a family member push you around in a wheelchair to enjoy a park or museum. Some people find canes or walkers helpful for balance, muscle weakness or pain. Walkers may also provide a place to sit and rest when out and about. Others use electric wheelchairs to get around their homes, though these can be difficult to get covered by insurance. People with ME/CFS tend to see themselves as “not sick enough” or otherwise unworthy of using mobility aids, especially in public. Many of us “don’t look sick” and worry about being judged, especially when we have the option of pushing through symptoms and going without, knowing we will pay for it later. I encourage you to make use of whatever tools you have at your disposal to minimize exertion and maximize your quality of life. You are worthy of accommodations for your illness. I am happy to fill out Disability Parking Placard Application for patients upon request. ## Eliminate Unnecessary Stress Watching the news is a classic example of an unnecessary source of stress. Minimize stressors. If you can’t do anything about it, you don’t need to be worrying about it. Consider therapy if you find yourself expending emotional energy on things outside of your control and you need help learning how to let these things go. # When you Have to Push It is not uncommon for patients to make no effort to pace because they are in a situation where perfect pacing is impossible. For example, they may have an upcoming move or doctors appointment that will require travel. They wonder what the point is of pacing when they know they are going to crash anyways. The desire to squeeze every ounce of productivity or enjoyment out of their day feels better than resting if the outcome is going to be the same anyway. However, the ME/CFS patient who learns how to pace will be more effective and functional during their stressful task or event and will minimize the severity of the crash that occurs. Here are my tips for pacing around a stressful event that is likely to cause a crash: Rest before and after the event as much as possible: - Take 1-3 days before the event to spend most of your day laying in bed with the lights low. - Minimize screen time and any other stimulating activities. - Stock snacks by the bed or recruit help with getting meals. - Be as restful as you can be. Do the same thing after the event for 1-3 days or longer if needed. - Cultivate a peaceful and restful mindset. Try meditation, prayer, gratitude journaling, or whatever other techniques you find helpful. You don't want to spend your rest time worrying. Minimize the stress of the event itself: - Take frequent breaks where you are laying down in a quite area if possible. - Use mobility aids or sensory aids (like ear plugs and sunglasses) if applicable. - If you need to accomplish a prolonged physical task, work in 5 minute chunks followed by 10 minutes of quiet rest (or find a ratio of activity and rest that best fits your situation). - Set timers so you don't accidentally work for longer than intended. - Drink electrolyte-enriched fluids during every break and have easily accessible meals available. Try to eat frequently. - Do what you can to keep your mindset positive and relaxed. A task done in a state of anxiety is going to be harder on the nervous system than a task done in a calm state. Accept that a crash is likely and tell yourself that it's OK to crash. You have prepared for it and you are going to take all the time you need to rest afterwards. - Rest with your feet up # Additional Pacing Resources [ME Action Pacing Guide.pdf - Google Drive](https://drive.google.com/file/d/119zeu1534ciM2jsW1ojazhhKVXXwB5S9/view?usp=drive_link) [PEM-Avoidance-Toolkit.pdf - Google Drive](https://drive.google.com/file/d/1A5BqVdrb1vk0xU-2XnfTqq0b8PwcoXGK/view?usp=drive_link) [OT4ME](https://www.ot4me.com/) [Crash Survival Guide](https://batemanhornecenter.org/wp-content/uploads/filebase/crash_care/Dark_Blue_Survival_Guide_Complete.pdf)