Missing More after graded exercise therapy is a series of posts from the perspective of people with ME for ME Awareness Month (May). If you have a story to share about exercise and ME see this post for instructions about how to contribute.

All types of people get ME, including qualified fitness instructors who enjoy exercise. Emma explains how despite her background she was unable to complete a graded exercise therapy plan:

With all the recent hype around the disputed PACE trial [a £5m CFS/ME activity management trial which is regarded as bad science], I felt inspired to post an article on my views on graded exercise therapy (GET) – both as a fully qualified Level 3 Fitness Instructor/Personal Trainer, and as someone who has lived with ME for nearly 4 years. In my opinion, graded exercise therapy does not work for most people with ME, and worse still it can be damaging to their health.

Before ME I was a very active person who loved to keep fit and enjoyed my work in encouraging people to improve their health through exercise. I was passionate about what I did and I Ioved helping people to achieve their fitness goals. However, the people I worked with were generally fit and healthy or had a condition where exercise helped to improve it.

In May 2013, I was hit with a nasty virus and life as I knew it came to a standstill (you can read more at my blog NotJustTired). Just getting out of bed required a huge amount of effort. Not being able to do basic day to day activities, let alone all the other things I was used to doing, was tough to say the least. For someone who was used to always being on the go this was a big shock!

After seeing many Health Care Professionals and having lots of scans I was then diagnosed with Post Viral Fatigue Syndrome (then Chronic Fatigue Syndrome/ME later down the line). These days I am able to do more but it is slow progress. Activities need to be time restricted, and they also depend on the day and my energy levels at the time. More than anything I have had to learn how to slow down and rest. I cannot emphasise enough the importance of learning to rest.

In my opinion, rest and relaxation are much more important than being told we need to take part in an ‘exercise program’ to get back to health. In the early days if I tried to do anything but rest it would set me right back to square one i.e. bed! Yes I know our bodies are designed to move, and I know that when they don’t there will be some deconditioning over time, but when dealing with a condition as sensitive as ME a more holistic approach is needed.

Most people living with ME would love nothing more than being able to exercise. We are not ‘lazy’. The desire is there but our bodies simply won’t let us. I won’t go into all the science bits myself but I recommend reading the work of Dr Sarah Myhill and in particular the paper ‘CFS- The Central Cause: Mitochondrial Failure.’ Here is a link to the full paper …

This paper provides evidence that ME/CFS is a physical illness. Also it highlights why therapies such as graded exercise therapy won’t work. If we do more than we are able to do, we will do ourselves no good whatsoever. There are other studies that have been carried out that may take a slightly different angle on this, and of course research is developing all the time, but I feel this paper explains simply why people with ME can easily run out of energy and why we physically can’t just push ourselves to ‘do more’.

Not one approach will work for everyone, and what works for you one day may not work on another, due to the unpredictability of this illness. That is why I would even struggle to put together a rigid exercise program for myself! Instead I have learnt to tune in and listen to my own body (as best I can!) and to only do activities within my boundaries on that particular day.

When I’m lucky enough to have the energy to do some kind of physical activity (on a good day) I find that something gentle like Restorative Yoga or Qigong classes are beneficial – working to my own level of course and not to the pace of the class. I then make sure I plan in some rest time afterwards.

It was only after I got an ‘official’ diagnosis of CFS/ME (just over 2 years into the illness) that I was referred to a physiotherapist and given an exercise programme – graded exercise therapy. My programme was based on a series of exercises – very similar to what I may have used in a circuit class back when I was working as a Fitness Instructor! The idea was to come up with how many times I felt I could do the programme a week, how many of the exercises I could do each time, and for how long. I explained to the physio how difficult this would be, given the unpredictability of my symptoms and more importantly how I had a 1 year old son (now 2) and all my energy went on looking after him. Luckily he was understanding, but still the agreement was for me to take away the programme and ‘give it a go’.

I am grateful that with my background knowledge in fitness and also having the experience of living with the condition for quite some time that I was sensible enough not to overdo things. To be honest I tried to do a few of the exercises on the odd occasion but found I couldn’t manage to do the programme. Yes, I could have pushed myself to do it but I imagine I would have wound up feeling pretty terrible. Instead the worst that happened was that I felt demotivated and frustrated at not being able to do something that was once second nature to me. I was honest with the physio, and to be fair to him he took my points on board and it was agreed that this was not something for me at this time.

However, this could have been a very different story if I’d been given the programme in the early stages of the illness. I was so desperate to feel better that I would of tried anything. Also if I hadn’t had the confidence (this has taken time) to say it wasn’t for me, then I would have felt that I ‘should’ be doing the exercises and felt under pressure to complete the programme. If someone with a medical hat on tells us that we should do something to benefit our health, we tend to believe them.

This is why I find it quite shocking that clinical trials have been using graded exercise therapy not only for adults but for children. Especially given that hundreds of people in surveys have reported harm from graded exercise therapy. I strongly agree with the recent campaigns that the PACE trial findings should be retracted and that graded exercise therapy should stop being recommended as a treatment option for people with ME/CFS.

Emma first published this post on her blog: http://notjusttired.com/2017/03/10/my-views-on-get-as-a-fitness-instructorpt-living-with-cfsme/

If you found this post interesting, read our series of posts about Missing More After Graded Exercise Therapy.

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