ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
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UK Guidelines released
The full guidelines can be found here.
A step forward
The UK’s Chief Medical Officer has released the “Report of the Working Party on CFS/ME.” The Report has taken three years to produce and involved nearly as many consumer reps as health professionals (unlike the Australian process which had one consumer rep).
Headlines in the British and Irish press encapsulate a key message of the “CMO’s Report”:
This report addresses the needs of the severely ill (specifically the lack of treatment options) and youth. It also makes research recommendations which have been taken on board by the UK Department of Health.
For example two of their responses are as follows:
It is imperative that ME/CFS be given similar research priorities in Australia. We need leadership on this issue.
The report was not without controversy, but it was considered a major step forward by four of the six consumer groups in the UK.
It is worth noting a few points about the controversies. The two dissenting groups could not agree to the inclusion of Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET). It is not surprising that the 25% Group dissented, because the more severely affected CFS patients whom they represent specifically, are most at risk of being harmed by these therapies – GET in particular.
Dissenters from the medical side were not happy with what they considered the subjective nature of some of the content. In particular they were not happy with the inclusion of the concept of ‘pacing’ which is not unlike the term ‘budgeted activity’ which I will introduce later. (Click here for an explanation of ‘pacing.’) The objection raised is that this treatment has not been clinically tried and proven. The argument is that subjective testimony of patients should not be published until it is proven.
Herein lies the rub. We are dealing with a condition that carries many ‘unknowns.’ It is foolish to attempt to draft guidelines which uphold a best-practice must-be-proven-emphatically-before-suggested approach. It is still early days. When little is really known it becomes unscientific and quite wrong to set in place such high benchmarks.
Such stipulations will necessary preclude many treatment options – because there has not been time enough (and funds) to properly test them. This is far different from something having been tested and found to have no significant effect. So, if the therapy does no harm, and patients universally suggest it, it should be considered. (But clearly marked as an unproven theory, and with a suggestion for research to be conducted into)
The type of medicos who are pushing for high scientific standards must know full well that psychological interventions, which are relatively cheap and quick to study, will necessarily be the only ones which can be first recommended. It is deplorable that such people will hide behind a facade of upholding scientific process, and forget the patient along the way. We know our bodies. We know what is best.
ME/CFS Australia (SA) Inc strongly rejects GET as a management option – even if its recommendation is qualified by a disclaimer suggesting the clinician work within the patient’s limits. The term is totally inappropriate – it is too suggestive of a continual upward increase in exercise until recovery is made. The philosophy behind GET is that the patient is either de-conditioned (and this is a primary cause of the fatigue) or psychologically ‘comfortable’ with inactivity. We reject any suggestion that these two factors cause CFS, and so exercise management may increase well-being to some extend, but is not a curative solution.
We believe that the CFS patient should not push themselves through pain and excessive discomfort – that overactiviity can damage health. It is important that people in the early stages of the illness pull back a bit. Don’t try to fight the fatigue and risk exacerbating the condition. (Of course – be active where possible)
A more appropriate term should be use such as ‘budgeted activity.’ This is suggestive of the patient using the energy he/she has on exercise where appropriate – always working within their bounds. Neither over or under activity.
Whilst the UK guidelines are a compromise between two viewpoints, the balance is acceptable. Neither party is fully happy with everything in the document. Of most concern to us is the inclusion of GET; endorsing GET fundamentally misunderstands the nature of CFS and is not the solution. This concern aside, and some cannot put it aside, the document represents great strides forward.