From the Letters Page, ‘Frontline', journal of the Chartered Society of Physiotherapy, 19 June 2013.
GET REAL
With reference to your discussion on graded exercise therapy (GET), in response to the ‘Making the grade’ article (20 March), one of the most challenging features of myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) is the symptom of ‘post-exertional malaise’.
This is characterised by a delayed and prolonged adverse physical reaction to minimal exertion, which is not relieved by rest.
There is a normal human urge to be active, and this is the same for ME/CFS patients who engage in activity as far as they can safely do so without exacerbating the illness.
However, some may not be able to increase their activity levels safely and shouldn’t be encouraged to do what isn’t safe for them.
It is important to avoid exaggerating the benefits of GET, and therapists must avoid being the cause of worsening symptoms as a result of an insensitive or misguided emphasis on increasing activity.
Instead of aiming to increase a patient’s activity levels, the immediate therapeutic focus should be on supporting patients to cope with limitations, and to live comfortably.
Robert Courtney (ME patient)
I’m glad to see this was actually published.
The original article is two case histories of resounding success for GET on “chronic fatigue syndrome”- and in both subjects, fatigue is described to be the main symptom.
However, without proper diagnosis, what story is there to tell?
They both had a PVFS sort of thing and treatment with medications which might have had undesirable side-effects.
I wouldn’t think those sufferers are ones whose muscles produce lactic acid at 20 times the normal rate – who would be the ones to deteriorate with any daft attempt to increase activity.
As always, good training is the answer, and it seems as though there are physiotherapists working with people with ME who have not got adequate knowledge of the illness.
I hope the CSP is taking note and organising suitable training courses, after consultation with ME Association, and with reference to the recent survey results.
Nicely phrased. Thanks for writing it.