Sometimes people are concerned by what they have read online, or by someone else affected by their condition: people perhaps saying ‘exercise made me worse’, for example. Then, on the other hand you have the NHS promoting GET, and GET being supported by NICE guidelines and research. Very confusing. So what’s going on?
Fundamentally we are talking about two different things (This is a huge misunderstanding out there: a case of ‘Apples’ and ‘Pears’):
1) A Graded Exercise Therapy (GET) Programme for CFS/ME (Apple)
2) A ‘General Exercise Programme’ (Pear)
These are two totally different concepts and programmes, and have totally different results.
Therefore, it is quite right that people might say ‘exercise made me worse’, because at the wrong ‘dose’, ‘exercise’ probably will. However, it’s also right that people would say ‘Graded Exercise Therapy made me better’ as this is now strongly supported by research.
The main confusion comes when people inaccurately describe a ‘General Exercise Programme’ as ‘Graded Exercise Therapy’ when in fact it isn’t.
This is helpfully summarised by the NICE Guidelines for CFS/ME:
“Strategies that should not be used for CFS/ME [1.4.6]
The following strategies should not be offered to people with CFS/ME:
• Advice to undertake unsupervised, or unstructured, vigorous exercise (such as simply ‘go to the gym’ or ‘exercise more’) because this may worsen symptoms.” (p241)….In other words: ‘A General Exercise Programme’ (our ‘Pear’, above)
What IS recommended is defined as follows:
“6.3.1.2 Graded exercise therapy (GET)
1) GET is an evidence-based professionally mediated approach to CFS/ME involving appropriate physical assessment, mutually negotiated and meaningful goal-setting and education. An achievable baseline of physical activity is agreed, followed by individually tailored and planned increases in the duration of exercise. This is followed in turn by an increase in intensity when the patient is able, taking into account their preferences and objectives, current activity patterns, sleep, setbacks/relapses and other factors, with the objective of improving symptoms and functioning.” (p190)…. In other words: A Graded Exercise Therapy (GET) Programme for CFS/ME (our ‘Apple’).
Two things should help reassure you:
1) Nothing gets recommended by NICE unless it is both effective and safe
2) The PACE research trial, which explored GET (and other treatments) in great depth, also found GET to be effective and safe. Nothing gets published in The Lancet unless it’s very rigorous and checked out thoroughly.
So, as long as you are actually doing Graded Exercise Therapy, and not a General Exercise Programme, then you can be confident that you are on the right lines.
If you’d like to understand more about what GET actually is, and how it’s defined, then I’d recommend having a look at the NICE Guidelines for CFS/ME.
http://www.nice.org.uk/nicemedia/live/1 ... /36191.pdf
The following pages are useful:
• GET Definition: p190
• GET Programme Details: p246-247
• Strategies that should not be used: p241
PACE Research Trial – Article (Lancet publication):
http://www.thelancet.com/journals/lance ... 2/fulltext