We need to talk about Graded Exercise Therapy (GET)
This is triggering to write, as it will be for some to read. I cannot delve too deeply into this topic for that reason, but after recent correspondence online with new followers I felt compelled to create this post.
There are people here who underwent Graded Exercise Therapy programmes decade ago who will never regain their health or see progress. It is deeply upsetting, scarring and terrifying that this has been able to happen.
I am not an expert on ME/CFS or Long Covid. I am a patient who cannot stand to see what has happened to many of us, happen again.
What is it?
You mean other than the worst thing for people with ME/CFS to be doing? Graded Exercise Therapy (GET) was/is a form of physical therapy for the treatment of Chronic Fatigue Syndrome (CFS) where physical activity is gradually increased over time. It is a treatment that was offered to ME/CFS patients in the UK by the NHS as specified in the NICE guidelines (National Institute for Health and Care Excellence) from 2007-2021, but the recommendation was removed by the 2021 NICE guidelines because of high rates of harm.
Why is it bad?
In part, a body with ME/CFS is thought to be damaged at a cellular level. Our cells are no longer able to produce energy (ATP) properly. Exercise will not fix this. In fact it’ll burn out the minimal supply of energy we do still have, and this is thought to do lasting and irreparable damage. This is why ‘rest is best’ because it allows the energy supply to replenish to the best of its now limited ability. (Chapter 2 of Dr Myhill’s book Diagnosis and Treatment of Chronic Fatigue Syndrome is a good place to get a crash course in the role of mitochondria in CFS.)
Why was it recommended?
The use of GET as a treatment is based on the disputed deconditioning hypothesis, and the highly controversial biopsychosocial model (BPS) of ME/CFS.
The PACE Trial (short for “Pacing, graded Activity, and Cognitive behaviour therapy; a randomised Evaluation) became the basis on which the NICE guidelines on ME/CFS were based. It is very hard to fathom how this was able to happen.
I thought the NICE guidelines had been amended though?
They were, in October 2021, after the most stressful and damaging few months I and many others have experienced as patients. Those involved in the PACE Trial and their high powered pals dug their heels in hard to stop the guidelines being changed. Let’s just say there was quite the saga and you were lucky if you missed it.
Why is it still being recommended?
Old habits die hard and some people with a lot of influence have carved whole careers for themselves out of promoting and providing GET. One of the authors of The PACE Trial has been a key figure in dealing with the huge wave of post viral fatigue seen in people with Long Covid. So we must work fast to educate as many people as we can and save them from the damage we have seen GET do to people with ME/CFS. Change will be slow to filter through to medical professionals but we are hopeful that it will come.
What can I do?
Write to your GP surgery bout the changes to the NICE guidelines. Wave a red flag at anyone who is being offered such ‘treatment’. Seek out work by David Tuller and Brian Hughes to keep up to date. Help fund biomedical research into ME/CFS. Let’s not let it happen to those just receiving their diagnosis.