Measuring Progress: How Do I Know If I’m Improving?

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By Bruce Campbell

Improvement with CFS/FM is possible and even relatively common, but the pace of change is gradual, making it hard to see improvement from day to day, week to week or even month to month.

So how can you tell if you’re getting better?

Eight Ways to Measure Progress

In my recovery, I used eight different metrics to measure how I was doing:

1) Records
My main approach was to try experiments and keep records. The logs took only a few minutes a day to fill out. I analyzed them every few weeks, looking for what made my symptoms worse and what helped me feel better. I viewed my activity level and other factors in my life as ‘causes’ and my symptoms ‘effects’.

The specifics varied by experiment, but the goal was the same: gather data to allow me to determine what helped and what hurt. Over time, I could see a reduction in symptoms and an increase in activity level with no increase in symptoms.

2) Lower Symptoms: I kept a symptom log focused on my key symptoms: fatigue, brain fog, and pain, with each rated on a 0 to 10 scale; the higher the number, the more intense the symptoms. Seeing the numbers go down over time was a key way to show myself that I was improving.

3) Increased Activity with No Increase in Symptoms: I hoped to improve my level of function gradually over time, so a key metric for me was being able to do more without intensifying my symptoms. So a third sign of improvement was being more active without paying a price in higher symptoms and time in bed.

4) Less Post-Exertional Malaise (PEM): PEM is the intensification of symptoms that follows overdoing and leads to forced rest. The key fact about PEM is that it is always out of proportion to the overdoing. Reducing the number and severity of crashes resulted in significantly less time spent in bed and more time being productive.

5) More Predictability: I knew I was getting better when I felt confident making commitments: “Sure I’d be glad to get together for dinner on Saturday.”

6) Higher Rating on Our Rating Scale: Our scale speaks of symptoms being mild, moderate and severe, and also of activity level measured by hours active per day. Doing a self-rating once a month, and having at least one and sometimes two or three other people rate me was the main way I measured progress.

Improvement averaged a little over 1% per month, so this metric was useful for making comparisons over several months or one year to the next.

7) Sense of Control: For most of my first year with CFS, I experienced repeated cycles of push and crash, leaving me with the sense that my life was dictated by my symptoms and out of my control. Then I heard of the idea of living a planned life with similar amounts of activity and rest each day.

Daily planned rests were the most important part of my plan. Consistency in both activity and rest enabled me to escape the cycle of push and crash, and to replace it with a sense of control.

8) Less Need for Rest: As I improved, my logs recorded less time spent lying down in a dark room with my eyes closed.

In Sum: Lower Symptoms, Higher Activity and/or More Control

Based on my experience and that of people in our program who have shared how they measure progress, I’ve identified three general categories for measuring improvement.

Category 1: Lower or Less Frequent Symptoms

Lower symptom level
Less frequent symptoms (e.g. headaches)
Lower level of drugs used to control symptoms
Fewer, shorter and/or less severe relapses
Less time spent resting

Category 2: Higher Functional Level

Higher level on Rating Scale
Active longer with no increase in symptoms
More time out of bed
More steps per day
More frequent or longer trips outside house
Longer or more intense exercise without flaring symptoms
Longer time on computer or reading without triggering brain fog
More frequent or longer periods of socializing without flaring
More time with *heart rate within safe range
Return to paid work or working longer hours

Category 3: Increased Sense of Control

Similar levels of activity each day
Fewer crashes and cancellations
Greater predictability

The ME/CFS and Fibromyalgia Scientist

We call our approach being a “ME/CFS/FM scientist.” Like a scientist, you try experiments and keep a record of the results. For example, you might try different medications to control pain or improve sleep.

Or you might use a pedometer to determine how many steps you can take a day without flaring your symptoms. Or you could experiment with the number and/or length of daytime rests to determine what combination best helps you control your symptoms.

Further, you can experiment to find safe limits for various activities such as bathing and dressing, chores, driving, shopping, exercise. And you can experiment to find limits for mental activities such as reading and time on the computer and social activity such as time with people. Your records can also help you discover sources of stress and the role of emotions in worsening symptoms.

The key is to keep records so you can correlate activity with symptoms, finding what makes symptoms worse and what helps you feel better. I wish I could tell you there is a magic pill for ME/CFS and FM, but none exists. What’s the most effective approach?

Let me conclude with the words of famous ME/CFS and fibro doctor Charles Lapp:

Your success in regaining control will likely depend more on what you do than on anything a doctor does for you.

Medical treatments can help alleviate the symptoms of CFS/FM and further reduce suffering by treating other medical problems, but the key to recovery in CFS/FM is acceptance of the illness and adaptation to it by means of lifestyle changes.

If you adopt [this approach] --which will require discipline, courage and lots of patience-- you can overcome the CFS/FM dragon. You can regain control, instead of your condition controlling you!