Finding your baseline with ME/CFS: step by step

When I was diagnosed with ME/CFS in 2020, all I received was a note. On it stood the word pacing, with no explanation. I did not know that crashes can lead to lasting deterioration. I thought: so I will feel worse for a few days, it is worth it. Yet the crashes piled up, I lost stability, muscle strength, orientation, until I was living with very severe ME/CFS and needed care around the clock. What I was missing back then was the knowledge of the baseline. So here I explain it the way I would have needed it myself.

What is the baseline?

The baseline is the space in which your body stays stable, without overload and without worsening symptoms. It is not a line, it is a space in which you can move safely without risking post-exertional malaise (PEM).

Important: staying within your baseline does not mean being symptom-free. It means your symptoms stay constant and no additional exertion makes them worse.

The baseline always covers three types of exertion:

• Cognitive: everything that challenges your brain. Thinking, decisions, and also processing stimuli like light, noise or touch.
• Emotional: every emotion affects your energy. Even positive feelings like anticipation cost strength, they strain the nervous system much like stress does.
• Physical: any form of movement, from sitting to buttering bread to walking. What healthy people do on the side can equal intense exertion for us.

The three types act with different strength and influence each other. For me, emotional exertion had the strongest impact and led to a crash most easily. When I expanded my physical baseline, my cognitive capacity dropped. How this looks for you is individual, and that is exactly what you will find out below.

Your baseline fluctuates through the day, and that is normal

The baseline is fundamentally stable and gives you a reliable frame. Within a single day it still fluctuates. I am often less capable in the morning, physically stronger in the evening and cognitively clearest around midday. Hormonal changes in the cycle, infections or additional strain can also lower your daily capacity for a while. That does not mean your baseline has dropped. The frame remains.

How to find your baseline: step by step

1. Document your activities

Keep a daily record for at least 7 days. Note activities, physical reactions and details like sleep quality, pain or medication. Because PEM often sets in only 24, 48 or 72 hours after an exertion, it can make sense to record 10 to 14 days, depending on your course. A simple notebook or a notes app is enough to begin.

2. Measure pulse, oxygen saturation and time

Two readings can show you how your body reacts to physical exertion, often before you feel it yourself. For the pulse, staying under 110 beats per minute serves as a rough guide for the safe range, based on findings of the Workwell Foundation. Many people with ME/CFS reach their limit well below that. Oxygen saturation should stay above 94 percent; if it falls below, breathing exercises like coherent breathing help. A pulse oximeter or a smartwatch is enough for measuring.

Important: pulse and oxygen saturation mainly reflect your physical baseline. With cognitive and emotional exertion they barely react, and for many people they even stay constant throughout. So measure time as well: how long does an activity last before the first signs appear? This duration is your most reliable measure across all three types of exertion.

3. Watch your symptoms, including the delayed ones

Check not only how you feel right after an activity, yet also what changes hours or days later. Watch for worsening of existing symptoms, new symptoms, emotional fragility and the feeling of being overwhelmed. A personal warning sign of mine: when I start dropping things or bumping into corners, I know my nervous system is overloaded.

4. Rate the three types of exertion separately

Distinguish in your record between cognitive, emotional and physical exertion. Some challenge you more in the morning, others show up only in the evening. When you see when which type affects you most, you can define your baseline with more precision and stabilise it in a more targeted way.

5. Recognise patterns and build routines

After the observation phase, go through your notes: How long and at what time of day can you do activities without intensifying symptoms? Which combinations overwhelm you, like talking and walking at the same time? From this grow consciously planned routines that save you energy, including for decisions. Your baseline becomes your roadmap: it creates orientation and a sense of safety.

If you do not have clarity yet

If after the first observation phase you cannot see a clear baseline yet, that is normal. Too many variables are at play. Finding the baseline is a process, and you have already collected valuable insights for the next attempt. Start again and reduce your day to the essentials. You are allowed to take your time with this.

📖 More on this

In my book Beyond Survival I go deeper into the baseline across several chapters, from finding it to expanding it in small steps.