I read the article about graded exercise therapy (GET) (Frontline, 20 March) with great interest as a physiotherapist and mother of a teenage son with ME or chronic fatigue syndrome.
I have read a lot around this subject on the internet, and have found a large number of online support communities and discussion groups.
There is a huge amount of controversy regarding the use of GET among these online support communities, with the majority reporting it to be detrimental to patients’ health.
This is believed to be due to inappropriately planned or progressed exercise programmes, possibly undertaken independently, or under supervision from a person without the appropriate experience.
I have certainly had to develop my skills and knowledge in this field to support my son. Establishing an accurate baseline is essential for these patients.
Post-exertional neuroimmune exhaustion is extreme fatigue not relieved by rest or sleep and can be delayed in onset for 72 hours.
My son would be able to exercise for five minutes with little apparent immediate problem but three days later he would be confined to bed for over a week while he tried to recover.
In addition, mental effort has the same effect as physical effort.
Ten minutes of maths homework has the same effect as exercising for 10 minutes.
Mental activities must therefore be considered when baselining children’s activity levels and setting an exercise regime.
It is concerning that physio is being talked about online as something that makes children with ME’s symptoms worse.
As a profession we need to ensure we are improving the health of all our patients – treating conditions we are competent to treat, carrying out thorough assessment and regular review of progress, and adapting exercise programmes as required.
I believe that physical activity does have a role to play in the care of people with ME.
But this needs to be individualised for each patient rather than adhering to a rigid protocol.
We can’t risk making any of our patients worse with our therapeutic interventions.
Michelle Bull is a physio and project manager at the London Cancer Alliance
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