The main symptom of ME/CFS is the so-called post-exertional malaise or PEM. PEM describes the worsening of symptoms after only minor physical and/or mental exertion. So imagine yourself taking a stroll around the block. Normally, you wouldn't mind a short walk like this. However, if you suffer from ME/CFS, the consequences of your walk could mean the worsening of all symptoms, such as headaches, unrestful sleep, or difficulty concentrating or finding words.

With pacing, those affected can make their everyday lives resource-oriented and reduce the burden of PEM. You can find more information about this below.

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Post-Exertional Malaise - PEM

The severity of post-exertional malaise varies greatly among those affected. For one patient, walking, shopping or cooking a meal can be so exhausting that PEM is triggered. For other patients, sitting or just raising their heads is enough to cause severe PEM. In addition, not only physical exertion can trigger PEM, but also mental efforts such as reading, watching TV or having a conversation. It is not possible to say in general how severe the symptoms of PEM are triggered and is very individual for all patients.

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The right pace with pacing

Pacing was developed by ME/CFS researchers and sufferers in the 1980s and is a disease management strategy. With the pacing strategy, ME/CFS sufferers learn to set the right pace for themselves. As mentioned above, the symptoms of those affected often get worse after the slightest effort. The aim is therefore to ensure careful use of energy resources and of a person affected in order to prevent overloading and its consequences on health and general condition. In addition, there is a risk that the general condition of those affected may worsen permanently. Unfortunately, there are also very serious cases where sufferers are unable to prevent PEM symptoms despite pacing.

If those affected can correctly assess their stress limits and adjust their everyday life to their physical energy reserves, pacing can help them keep their symptoms at a certain level.

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How does pacing work?

A trip to the toilet, a simple conversation or the use of a smartphone can trigger PEM for many people affected. For others, sitting upright alone is enough. But cognitive stimuli such as light or sound can also trigger the symptoms of PEM and thus cause a reduction in the level of function. When the overload threshold at which PEM is triggered is reached is different for each person affected. As part of pacing, each patient must find out for themselves which type of activity is appropriate at what intensity and length without causing subsequent worsening of symptoms.

There are at least two major hurdles that make it difficult to find out your own pacing dimensions. Since physical as well as mental effort can trigger PEM, it is difficult for those affected to identify the exact trigger. In addition, PEM symptoms can occur up to 72 hours later. In addition to these points, it is also possible that the personal load limit fluctuates from day to day or even throughout the day. It is therefore no easy task for those affected to recognize their own stress limits.

In addition to avoiding overload, forward-looking planning of sufficient recovery and recovery times is an effective pacing strategy.
The following considerations can help with this planning:

Prioritize

What can I do later and which tasks can I omit?
For example, you can set yourself a goal per day that you want to achieve. The important tasks are scheduled at the beginning of the week and less important tasks at the end of the week.

delegating

Do you really have to do everything yourself?
There are always tasks that you can hand over to your loved ones without a guilty conscience.

modification

Can I change regular tasks so that they are easier for me?
One example of a possible change is working lying down instead of sitting.

Diversification

Can you spread an activity over two days?
Switch between physical and cognitive effort.

Listen

Sometimes, with mild symptoms such as a sore throat, your body signals that a crash is about to happen. Listen to your body's information and actively take rest breaks.
Even if it is sometimes difficult for you, stop your activity immediately as soon as your body signals to you that a crash is about to happen. Ask yourself the questions above and act accordingly.

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auxiliary

Because of the delay in post-exertional malaise, it can be very difficult to precisely identify the activity triggers. Using an activity journal can help you gather information and identify and avoid those exact activity triggers. Be as accurate as possible with documented information such as times, frequencies, locations and sounds.

With our Long Covid app, you get to know your own energy reserves better. On the one hand, you can complete the above-mentioned activity diary directly with an evening query within our app! This allows you to keep an eye on the connections with your symptoms over time!

With the help of a course, we will also guide you through strategies for saving energy in everyday life and exercises to be more mindful of your body and health and to listen to your body. By connecting to a smartwatch, you can also use objective measures to see how much physical activity is good for you and thus better plan your everyday life in the long term. So we'll help you find your individual pacing strategy!

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