This blog is in response to an article on the website of the Chartered Society of Physiotherapy:
Making the grade: Robert Millett learns how graded exercise therapy is being used to combat chronic fatigue
20 MARCH 2013
The article presents the reader with a medical anecdote but does not present the full clinical evidence behind GET. The UK government funded a £5m clinical research trial, known as the PACE trial, which investigated CBT and GET in chronically fatigued patients, including CFS/ME patients whose main symptom was fatigue. The PACE trial discovered that up to 65% of CFS/ME patients improve over time, when receiving only standard medical care, which can be administered by a GP (e.g. medication for pain and sleep regulation.)
CBT and GET did not result in a significant improvement in objective endpoint measures, such as: physical disability; a return to work; a reduction in welfare benefit claims; or a reduction in private medical insurance claims.
In terms of objectively measured disability, CBT and GET made no significant difference, leaving the average patient severely disabled, at 52 weeks.
Based on subjective (self-reported) measures of disability, the trial reported that CBT and GET were 'moderately effective', and a maximum of 15% of CFS/ME patients achieved a minimal response to treatment with CBT/GET, leaving a large proportion of patients unsupported by CBT or GET.
Patient surveys have shown that a large proportion of ME patients report being harmed by GET.
A cardinal feature of CFS/ME is "post-exertional malaise". This unique feature of CFS/ME, means that CFS/ME patients react adversely to mental and physical exertion. Post-exertional malaise is characterised by a delayed and prolonged severe reaction to minimal exertion that is not relieved by normal rest. Patients refer to this reaction to exercise as a 'flare-up', 'set-back', or 'relapse'. It involves all the symptoms of CFS/ME increasing in severity. These flare-ups can last for days or even years. Patients quickly learn to modify their activity levels, in order to protect themselves from severely deteriorating symptoms.
Patients decrease their activity levels because they are ill. They are not ill because they decrease their activity levels.
This is a fundamental misunderstanding that is often made by physicians, hence the introduction of GET as a supposed 'treatment' for CFS/ME, which the PACE trial demonstrated is of very little benefit, and only benefits a small minority of patients.
It is a shame that many in the medical profession continue to obsess about exercise for CFS/ME patients, which the evidence has now shown is of very little value.
To the distress of CFS/ME patients, activity is the very thing that makes them worse.
Instead, the medical focus should be on supporting patients to live comfortably in their homes, and encouraging patients to rest and pace their activities in order to heal and to avoid severe flare-ups.
Every CFS/ME patient increases their activity levels when their symptoms start to improve. In fact, CFS/ME patients know only too well that it is all too easy to be over-enthusiastic, and to do too much activity. The price paid for this is a distressing prolonged worsening of symptoms. There is a normal human urge to be active, which is the same in CFS/ME patients, when they start to improve. Patients may need help to avoid attempting to do too much too quickly, and to avoid what is known as the 'boom and bust' cycle, but they do not need help to exercise.
The article discusses an anecdotal 'treatment' that took 10 years to work for a particular patient. Can we really be expected to believe that a treatment takes 10 years to work? Is this really a 'treatment', or a natural fluctuation over time. The experience of patients, and the evidence of the PACE trial suggests the latter.
The article also describes 'pacing' incorrectly. Every person (whether ill or healthy) engages in 'pacing'. It is the body's natural protective system that slows us down when we are exhausted. Thus, all patients in the PACE trial would have been 'pacing', whichever treatment arm they were assigned to. Contrary to the article, 'pacing' does not encourage patients simply to slow down, or to "adhere to an unchanging activity limit". But pacing encourages patients to tune into their bodies and symptoms, and to make adjustments to their activities according to the severity of their symptoms. This is an adaptive and intuitive behaviour that protects CFS/ME patients from harm. Pacing encourages an adaptive activity limit, not an unchanging limit. It is a natural and intuitive response to fatigue. Teaching a patient to be more aware of their symptoms and safe activity limits is reported by many patients to be beneficial.
The PACE Trial did not test 'pacing' as many patients understand it, but tested a novel formulaic version, know as Adaptive Pacing Therapy (APT). APT was a novel untested therapy, which proved unsuccessful. This does not diminish the therapeutic value of intuitive pacing, which all CFS/ME patients employ, whether consciously or unconsciously.
The potential harm associated with exercise therapies for CFS/ME have been under-reported, as discussed in Tom Kindlon's review paper, 2011. Indeed, the PACE trial authors have so far failed to report on the deterioration (as an equivalent measure to the reported clinically useful improvement) associated with CBT/GET, and data was not published in relation to the large drop-out rates for the only objective measure of physical disability in the trial. As such, it can only be speculated why a third of patients failed to complete the six minute walking distance test.
CFS/ME therapists need to move away from exercise therapies, and move towards a better understanding of the nature of CFS/ME. This can be achieved by listening to patients and patient organisations. Patients do need support, but they do not need the focus to be on increasing activity levels, as this will come naturally over time. Instead, the focus needs to be on supporting patients in their homes, to help them cope with the severe practical, physical and social difficulties that accompany this devastating illness.