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Letter to The Medical Journal of Australia
ME/Chronic Fatigue Syndrome Association of Australia
March 7, 2002
Dr Martin Van Der Weyden, FRACP, FRCPA
Dear DR Van Der Weyden,
I am writing to you on behalf of the ME/Chronic Fatigue Syndrome Association of Australia Ltd. The Association is an affiliation of all State Associations of ME/CFS.
The Association recognises fully the need for the dissemination of reliable information about the diagnosis and management of chronic fatigue syndrome (CFS) and has looked forward to the publication of a document that would herald major advances both in the recognition of CFS as a serious illness and in the standard of medical care available.
However, the Association considers that the RACP Chronic Fatigue Syndrome Clinical Practice Guidelines fall seriously short of being such a document and that their publication will be a backward step.
After an in-depth analysis of the Guidelines, an evaluation of the available evidence and extensive discussion with people with CFS, the Association is firmly and unanimously of the opinion that publication will result in:
with potentially far-reaching and long-lasting, adverse effects for the 40-140,000 Australians with CFS.
More specifically it is considered that the Guidelines:
As a result, the illness portrayed and the advice given in the Guidelines are removed from the experience and needs of the consumer and therefore of questionable relevance to the clinician. A serious omission in the Guidelines is the failure to address the extreme symptoms and special needs of the severely and very severely affected.
Consumers and many practising CFS clinicians feel strongly that there has been a continued resistance on behalf of the Working Group to respond to their major, well-reasoned and constructive criticisms of two drafts of the Guidelines.
During the more than five-year guideline development period, much new research has been published, providing more evidence of the biological processes occurring in CFS and against the relevance of a psychiatric-psychological approach to the illness. Yet the text of the Guidelines has remained largely unchanged since the first, much-criticised 1997 draft. The Clinical Overview is almost identical.
It appears, though, that it has been carried out with distinct selectivity and inconsistency.
Only two ‘evidence-based’ suggestions for management are made in the Guidelines (cognitive behaviour therapy (CBT) and graded exercise). These are both based on a psychiatric-psychological hypothesis for which there is no supporting evidence and considerable, uncited contrary data. In addition, the suggestions are based on the results of research trials that have little transferability to the CFS population in general. CFS research has been fraught with problems related to definition, the heterogeneous and fluctuating nature of the illness and the difficulty of identifying homogeneous sample cohorts.
When suggesting CBT and graded exercise, the Guidelines do not mention the extensive research evidence describing biological abnormalities that occur following exercise. This uncited evidence gives credence to the almost universal, anecdotal evidence of consumers of the adverse effects of mental and/or physical activity beyond one’s limits. There is widespread opposition from consumers to CBT and graded exercise, but this is not acknowledged in the Guidelines.
The Guidelines also suggest inappropriate sleep management practices for which there is no evidence of effectiveness and antidepressants for which there is insufficient evidence, while other management approaches, for which there is equal or better evidence (and which have consumer support) are ignored.
Pacing is the management approach preferred by most people with CFS and recommended by many clinicians because it recognises that even minimal mental or physical exertion can exacerbate symptoms. Yet, inexplicably, pacing is not mentioned, despite it being suggested in many submissions to the Working Group as currently the only safe and effective way to improve quality of life and maximise activity.
Until such time as there has been a broader range of CFS management research, based on homogeneous CFS sub-groups, we consider it impossible to produce truly ‘evidence-based’ guidelines that are relevant to everyone with CFS.
It would have been possible to produce useful and acceptable guidelines based on the ‘best evidence’ available in any area by including consensus opinion and non-consensus statements representing all schools of thought in those areas where research evidence is lacking, as is recommended by the National Health and Medical Research Council.
However, this has not happened and the resultant document is biased, out of touch with the realities of the illness and potentially harmful to the diverse range of people with CFS.
It is for all of the above reasons that the Association is firmly opposed to the publication of the Guidelines.
The attached document exemplifies the points made in this letter, specifying important information that has not been included, providing references that undermine the rationale behind the major recommendations, giving details of the inconsistencies in the consideration of evidence and demonstrating why people with CFS feel that the illness they experience is misrepresented in the Guidelines. A more detailed publication is in preparation for wider distribution and will be forwarded to you when completed.
In the interests of the health and welfare of people with CFS and to maintain high standards of medical science in Australia, the Association feels compelled to request that you reconsider your decision to publish the Guidelines.
Enclosed: Supplement to Letter concerning the RACP Guidelines on CFS (ME/CFS Association of Australia, Ltd., March, 2002).