CW Graded Exercise Therapy
The 2011 relapse came as a result of trying to increase my activity levels through graded exercise. (And as a result of attending the CFS/ME group sessions themselves – weekly sessions from January-March 2011 that were two hours long, with a mindfulness meditation half way through and a 15 minute break. An absurd undertaking for how severely affected I was but I was obviously desperate and an A CFS/ME patient wanting to learn. Spoiler alert, what they teach you is mostly common sense.)
It wasn’t a specific GET programme, more advice from the clinic to gently build up my activity levels.
So I started to try to use the stairs (a few steps at a time) or walk the 2 metres to the front gate on the days that I could. I was never really able to increase things beyond that. I couldn’t do it every day. I was so ill at the time I don’t remember feeling anymore dreadful after each exercise. Not initially anyway.
It worked so ‘well’ between February – August 2011, that I was able to move back up to my bedroom and leave my temporary dining room bed. I’d only been ill since the previous September remember so it was still early days.
I was doing what they were claiming would see me recover to full health; an incredibly, incredibly gentle graded activity increase that suited my specific restitutions.
And it caused me to relapse*. Infact I was worse at the end of August 2011 than I was when I was diagnosed in the previous November.
I was sold false hope but luckily I’ve always had quite a good bullshit detector. I never did anymore than I felt was sensible to ask of my body. But even that was too much.
So yes I feel quite strongly and am incredibly vary of graded activity of any kind, be it bonafide Graded Exercise Therapy itself or otherwise.
CFS/ME clinics still tell members of our community that they simply need to increase their activity level to build up resistance. I don’t deny that there’s likely an element of that; that deconditioning may play a part.
But is it not obvious by now that if exercise and activity programmes worked then there would be no long-term M.E. sufferers…
What I hate most is that those who see GET as some saviour imply that those for whom GET didn’t work (or made them irreparably worse) were at fault in some way. Those people can go in the bin, along with those who still sell the Lightning Process (cough witchcraft) to desperate and vulnerable people as a cure for M.E.
Good advice from over the years that has stayed with me?
- Do 50% of what I feel well enough to do
- Cognitive rest is vital
- Acceptance is important
- Rest some more
- Seriously, go rest!
*God help anyone who tries to tell me I clearly pushed my body too hard.