If ever there’s a message that deserves a blog, it’s this one. Last week’s announcement by NICE (National Institute for Health and Care Excellence) here in the UK, finally confirmed what many of us had already concluded - that fixed incremental increases in physical exercise should not be offered for the treatment of ME/Chronic Fatigue Syndrome (ME/CFS).
The key word here is “fixed” - and in the UK this was wrapped into an approach called ‘Graded Exercise Therapy (GET)’. If you were unlucky enough to have been referred to an NHS clinic/specialist 6-10 years ago, it’s very possible you were told to follow this protocol. The premise of it was that regular fixed increases in activity/exercise would ‘recondition’ the body and help with recovery. However, for many people it achieved the opposite and worsened their symptoms.
Now, I’m a huge fan of the NHS and it’s worth pointing out that this advice was given based with the best of intentions. But unfortunately, this is one time that they got it wrong.
The reason I was so keen to write this blog is because this recent announcement seems to have caused, quite understandably, a bit of confusion about the role of exercise in trying to improve/recover from extreme fatigue symptoms. And I think those of us who work in this field have an obligation to try and reassure and educate people on this.
The simple fact is yes, when approached in the right way, exercise/movement absolutely should be part of anyone’s fatigue improvement plan. In my coaching approach I help people achieve ‘Life Rescues’ and exercise is something that absolutely features when the time is right. But it’s about tailoring this to each individual, and timing it properly. We always start very carefully and gently, and my pacing approach provides them with ways to track and monitor when it’s safe to increase what they’re doing, and how to know that they haven’t pushed too hard too soon.
One of the people I’ve helped recently, Nalini, asked me for help a few months ago and I’ve been guiding her through her Life Rescue since then. She’d been tackling life with ME/CFS for several years before contacting me and had tried many things - including the fixed Graded Exercise Programme recommended by her medical practice. Here are some words from her about her experience:
“My experience with Graded Exercise Therapy (GET) was so negative, there was nothing helpful about it. It made my symptoms worse - not just physically, but mentally too. I felt I was being pushed to increase my activity much faster than I was ready for, and I used to dread my appointments with the therapist as they were full of blame, putting the onus for my lack of recovery on me.
Pamela has shown me that approaching exercise in the right way can be very helpful to my recovery. When I first contacted her, it was six years after my experience with GET and I was still struggling so much with my fatigue symptoms. I was scared to do anything in case it made me feel worse! But with Pamela’s help and guidance I’ve slowly addressed my mental blocks, and very gradually increased my activity - when it was right to do so. I’ve now got to the stage where I’m going for walks every day, often for half an hour at a time. And I even managed a journey on the London Underground recently - the first time for 12 years!!! Exercise can be a very helpful part of your recovery, but the GET approach was not the right one.”
I hope that this article helps to reassure and clarify the role that exercise can (and often should) play in achieving your Life Rescue from any type of extreme fatigue. But please approach it carefully, and if possible seek the help of someone who’s experienced in guiding people through this.
Take care,
Pamela
Update as of December 2023: I recently ran a webinar called 'How to start exercising when you have fatigue' and this is now available to purchase on demand for £10. If you'd like to hear my more specific guidance around knowing when, and how, to start exercising and moving more please visit: https://pamelarose.podia.com/exercising