If you break your leg, a key part of recovery is undertaking physio to rebuild strength. Crucially, you only do this after your leg has healed, not before. Exercising whilst your leg was still broken would cause significant damage and actively harm recovery.

The same principle applies with ME/CFS. At lower energy levels - severe or moderate, but it’s dependent on the individual - we physically don’t have enough energy in our cells. So by burning them on exercise instead of generating new energy, we damage our recovery.

This is where the horror stories of Graded Exercise Therapy come in, where people with low energy levels have been forced to exercise and had significant relapses.

The problem isn’t the exercise itself, it’s exercising at the wrong time. Exercise is important for the healthy functioning of the body, supporting our lymphatic system, muscle development and mood, amongst other things. This supports our healing. As with a broken leg, exercise is essential at later stages of recovery, when we’re looking to build strength.

Bringing it in at earlier stages in a controlled way helps build our strength to reach these later stages, but there are a lot of challenges and fears around starting out.

What exercise can we do when our energy is so limited?

The key is starting small. Gentle exercise means beginning with the simplest movements. It might be just tilting your head to one side for a few seconds, or flexing your fingers.

Whatever you think you can manage, do half of that and then wait and see what the impact is. If you cope without increasing symptoms then you can gradually increase things. If symptoms flare, that’s a sign to dial it back.

It’s essential to listen to your body through this process. What does it need? We don’t always get an answer right away, as Post Exertion Malaise can delay the response by many days, but over time we start to understand our limits.

Our aim is just to bring a little bit of movement and life back into our body. We can’t jump straight to the kind of exercise we may have done before getting ill - no park runs for us. Instead, try to gradually build up at a sustainable pace. Over time, we can bring in other aspects, perhaps stretches, short walks or restorative yoga.

The pace may seem frustratingly slow and ineffectual, but the cumulative impact will be beneficial so stick with it. If we reach a plateau, or if we have to dial it back or even stop fully for a while, that’s ok too.

How do we know when we can get started without it damaging us?

Firstly, we need to stabilise our energy through pacing and get out of the boom and bust crash cycle. Only then does exercise start being an option again.

Even if we’re roughly stable, when basic tasks like having a shower become luxuries, not necessities, we learn that exercise and movement isn’t for us. At low energy levels, this is an important lesson. But at higher levels, it can hold us back in our recovery. We can get stuck in a very limited world, perhaps lying in bed or sitting in the same chair for hours every day.

There’s a lot of fear that comes when starting out with exercise again. We know the consequences of overstretching ourselves even just a bit, and any benefits can seem nonexistent in comparison.

There’s unlikely to be a clear signal that we’re ready to begin gentle movement, so at some point we need to just start running experiments on our own recovery, including occasionally pushing ourselves a little beyond what we think we can do, to test our boundaries.

Sometimes this stretch shows we can do more than we thought. Sometimes it ends up being too much. Recovery is uneven and ups and downs are normal even for healthy people. It’s ok if some experiments don’t work out. What works at one stage isn’t necessarily helpful at other stages, so try and stay curious about your own recovery.

There are many options available for gentle exercise. Some things that have worked for me include: short walks; gentle stretches; Mindful Movements, a set of very gentle exercises for people with limited energy, and more recently, Nourish Yoga, an excellent weekly zoom class run by and for those with chronic illness. All classes are gentle and slow-paced, and instruction is invitational.

If you’re unsure, start with some basic movements and stretches and go from there. See if you can combine gentle exercise with other things, especially getting outside in nature or sunshine. If fear comes up, just acknowledge it and work with your body. And if you need to stop, then stop. Remember, there’s life in you yet.