How to sustainably increase activity levels with ME/CFS

I could write a whole book about how I’ve increased my activity levels with ME/CFS; no blood, actual sweat and a whole load of tears have gone into the process. I’ve fine-tuned over the years and I’m now in a position to share. I’ve gone from spending the majority of the last 6 years housebound to regularly running 5k now so i’d say it was a success!

This is a step by step guide that can be applied to any activity that you want to increase. I’m going to use walking as my example here but in my recovery I focused on one physical activity (walking) and one mental activity (reading). I built things up from practically zero to a point where I don’t even have to consider if I have the energy to do either – it just happens! It wasn’t linear progress by any means and I often felt like it was one step forward, two steps backwards plus throw in a major relapse in the middle that meant I was back to zero and had to painstakingly repeat the whole process… it’s been a ride! It can be tedious and requires complete dedication but the results are so so so worth it.

Little disclaimer: my approach is loosely based on Graded Exercise Therapy (GET) as taught to me by my NHS consultant – it has now been proven that the standard GET method is not and has never been effective for ME/CFS and in many cases does more damage than good. I don’t even want to include my own approach in the same sentence as GET but some may see comparisons so I wanted to address it. This approach couldn’t be more different – it is an intuitive self-led programme with gentle increments and you are totally in control and listening to your body’s cues to guide activity levels. It goes without saying that this is simply my experience and what has worked for me, if you want to try something similar go gently and be kind to yourself.

1. Identify your baseline

If you have ME/CFS you will be all too familiar to feeling of payback or post exertional malaise (PEM). It’s the defining symptom of the condition and is the result of the body going beyond it’s limits, leading to an energy crash and worsening of symtoms for days after the event. Any activity that puts your body over your activity limits can result in PEM – lifting a kettle, washing my hair, walking downstairs all brought this on in my very poorly days.

To avoid PEM the first thing you need to do is identify your baseline activity level. Your baseline is the level of activity you can do on your worst day. Chances are you know what this is already but if not take a few weeks now and keep a record of what you can manage day to day for your chosen activity. This is a level of activity that doesn’t cause any payback, so if you are someone that is in a constant boom and bust cycle of overexerting and crashing you really need to take some proper rest to get a handle on things and build from there. For physical activity it is essential you are at the point in your recovery where you feel well at rest for at least a few weeks before you attempt to increase levels.

2. Use time to measure activity

Once you’ve identified what you could do on your worst day it’s time to build a programme that will mean you do your activity for a set amount of time every day. I identified my baseline as 5 minutes, so I introduced 5 minutes of walking each day. If alarm bells are ringing about having to do your baseline everyday, it may be that you’ve over estimated what you can do, go back and reassess! I’m totally familiar with the feeling of just wanting to get on with it and make progress but your body will thank you. You could even just half your baseline as a starting point and go from there.

I used time as my metric for measuring my activity as it seemed the best for allowing variations in health. If you are using distance or step count as a measure it’s more difficult – some days a 500m walk might take a couple of minutes, other days it might take much longer and more energy. Using time as my guide meant it could be a gentle potter around the garden or a proper walk depending on how I was feeling.

3. Working with a heart rate monitor and what to do if you don’t have one

Each day you need to record your activity and your heart rate. I used a Polar chest strap heart rate monitor when I first started, this was great as it gave a real time indication of HR rather than an average over a few minutes (like a Fitbit does). I now have an Oura ring which wouldn’t give an accurate measure of HR during activity but tracks so many useful variables for recovery (more on that another day!)

On each day make a note of the time and the average heart rate measure of the session. You are aiming to keep below your anaerobic threshold (going above this is what causes PEM). Don’t analyse too much for now, just make a note of the figure. To calculate your threshold:

(220 – age) x 0.5 = Heart rate level you are aiming to be below.

Mine worked out to be close to 100bpm so I used this as my measurement, it was easy to remember and at a quick glance you can tell if you are over or not.

If you don’t have access to a heart rate monitor you could also use your perception of exertion of how hard you think your body is working, you could look to physical cues like increased heart rate, sweating, muscle fatigue etc. How do you feel during and after the activity, do you have any symptoms?

If you are doing this for a mental activity I did it exactly the same way but used a sliding scale for my perception of cognitive function; was it hard to concentrate, did I get brain fog/headaches, could I follow the narrative? I scored each day out of 0-20 depending on how easy or hard I found it aiming for under 10 as my threshold.

4. Knowing when to increase activity levels and by how much

Once you have had 7 consecutive days where you have been below your threshold and feel comfortable with the activity level it’s time to start thinking about increasing things gently. I increased by 10% each time. For example after 7 days of 5 min walks with a HR below 100 I started doing 5.5 mins, then once that was comfortable I did 10% extra and so on.

My HR levels followed a similar pattern each time, the first week of an increase it was very variable and often over my threshold then by the second week things had levelled out and I had my 7 consecutive days below threshold and I went up by 10% after then. You are completely in control of this, if you feel like 5% is more appropriate go for it, I would say no more than 20% though as it needs to be steady and gradual.

walking 20 minutes for the first time, such joy!

When following my programme I didn’t do anything that meant I would go over my allotted time for activity. This is really important as you want to be working with a consistent level of activity, not adding in things that are going to cause you to go over your energy limit and crash. It’s tedious and I didn’t really leave the house for anything else for around 6 months but the fact I was outside and walking was absolute magic and I didn’t want to do anything to jeopardise that.

If you have a wobbly few weeks or it feels like it’s too much, step back down to a point where it feels comfortable. Identify your new baseline and go from there, healing isn’t linear and don’t be hard on yourself if you feel like you are going backwards – even though it’s frustrating at the time it’s all something you can learn from and will be useful in the future, I promise!

5. You’ve reached 30 minutes! What next?

Once you have increased your levels to the point where you are doing the activity for 30 minutes WELL DONE! You can either continue in a similar way to increase length of activity or you can start increasing the intensity. So for physical activities this is about moving in a way that is going to slightly increase your average heart rate. Keep it very gradual again, with 7 consecutive days at your new level. For mental activity I did things like moved on to more complex books – anything to make your brain work a little harder!

I found that around 30 mins was the mark for me where I could start being a bit more variable with what I was doing each day. I generally went for a 30 min walk every day but some days I did more than that and that was okay for my body too. At this point as long as you aren’t repeatedly crashing after activity I’d say it was okay to be a bit more relaxed about things! There is a lot of trial and error involved so be kind if you crash, go back to the safety of your recent baseline and build from there.

Throughout the whole process – if you have a particularly rough day don’t push it. By working with your baseline (what you can do on your worst day) there shouldn’t be too many instances where you feel overstretched but if you do stop instantly and tomorrow is a new day.

Summary

• Identify baseline
• Build programme from baseline – a level of activity you can do every day
• Record time and heart rate each day
• Calculate anaerobic threshold
• After 7 consecutive days below threshold increase activity by 10%
• Continue 10% increments for gentle gradual progress
• With a setback work out new baseline and start from there
• Once 30 mins is reached, increase length or intensity of activity