I’ve been tracking my daily energy levels for two years now, since first getting ME/CFS, so this seems a good moment to review and share my progress.

This post is about my process and how it’s evolved. I’ll do a separate post showing my actual charts.

The aim of tracking daily energy levels is to monitor the trend, not to focus on any particular day or week. This lets you step back and see your overall recovery trajectory outside of the natural ups and downs of recovery, showing your real progress and if you’re getting a bit stuck and a change of direction might help.

With that in mind, I’ve been writing a simple diary on my phone, noting down my average energy level for the day. I also make a note of what I did during the day and how I felt. That’s not essential, but it helps explain what was happening at the time that impacted on your energy levels, as it’s easy to forget. I’ve also found it to be really useful as a chronicle of both the challenging times and the positive moments and milestones on the way.

I score energy from 0-10, where 0 is hospital level, i.e. largely incapacitated, and 10 is the baseline for a normal healthy person without ME/CFS. So 10 doesn’t mean peak fitness, it’s just the minimum normal standard for non-fatigued health.

These energy levels give a rough indication of where you are in the standard categories of ME/CFS, of Very Severe (0-1), Severe (1–3), Moderate (3-7) and Mild (7-10). You can customise these ranges to better match your experience, or ignore them completely.

My points score for each day is subjective and I aim to go on how I feel and not overanalyse it. We are tracking the trend so it’s important not to focus on any specific score or get too worried about accuracy.

I started out using half points e.g. scores of 2, 2.5, 3. This worked well to get me going using rough ballpark figures, especially at lower energy levels where it’s a big effort to track your scores at all.

Later, when I stabilised in the Moderate range, I started using decimals, to give more finely graded scores, e.g. 5.2, 5.4, 5.5. I found this useful to give myself a sense of progress from day to day, as there were many days when I felt I had improved slightly from the day before, but not enough for a whole or half point. Similarly, it helped to show when I was having a slight dip, without the feeling of dropping down a half point or more.

My routine is to note down my score at the end of the day, based on an average for the day. On days where I’ve had quite wild swings of energy, I generally go with my energy level in the evening, so I’m measuring broadly the same time of day each time.

As I started tracking my energy levels a few months into having ME/CFS, I backfilled my scores for the previous months, including when I was in hospital, based on some notes I’d written and the level of symptoms I was experiencing at that time. The scores won’t be completely accurate but as we’ve already discussed, this is completely fine as it’s the trend we’re interested in.

I look back on my previous scores once every 6 months or so, and I put them all into a spreadsheet so I can plot a chart of my scores and see the trend, which I’ll show on the next post.

I think reviewing more frequently would be counterproductive, as it takes a long time for changes to bed in and have an impact and it’s also important to not get too focused on individual scores.

I also find it can be emotional looking back at the course of my illness, so I try to be kind to myself. If it looks like the trend is towards recovery then that’s wonderful, but if it’s not then that’s also essential information that there’s an opportunity to make a few changes that will give your recovery a significant boost. It can be a painful message to receive though, so remember that you’re doing the very best you can and you will get there.