An Educator's Response to CFS Guidelines Revised Draft 2001
Maureen A. Stephenson
1.0 PRESENTATION AND FORMAT
1.1 Areas of Concern
- inconsistency in labelling the document "Revised Draft 2" at the same time describing it in the Appendix (page 64) as "this final version of the Guidelines
- the need for further editing in terms of content and length to correct content imbalance and to reduce the text which may be too long for busy doctors to read
- noticeable repetition of content especially in the sections on "Clinical Overview" and Chapter 1 "What is CFS?"
- bias to one school of thought, ie. an approach which is parochial rather than global and which contains too much "old stuff"
- narrow research base
- no details re literature search.
- clarify "Revised Draft 2" versus "final version"
- edit for repetition, inconsistency and imbalance
- identify the writers to prove or disprove the perception of bias
- delete the "Clinical Overview" section and refine and improve Chapter 1 "What is CFS?"
- move Chapter 5 "Social and Legal Issues" to Chapter 1 as it is a suitable opening for the Guidelines. It:
- warns against a dismissive attitude to CFS
- sets the scene for a balanced discussion of the issues
- is in accord with society's expectations regarding accountability, entitlements and patient rights
- permit response and recommendations relating to research by providing a literature search
- give more credibility to patient experience, at the same time restricting the comments from patients and patient groups to those which incorporate coping strategies.
2.1 The document is characterised in the main by unfortunate and inappropriate imbalances including:
- limited acknowledgement of the CFS continuum
- minimum consideration of sub-groups within the CFS population
- stereo-typing of patients with minimum attention to fluctuating symptoms and emphasis on those patients who recover
- exclusion of those patients whose condition is stabilising but not improving and those who continue to deteriorate
- emphasis on CFS as a sudden onset illness
- application of negative symptoms to CFS alone when, indeed, they are common to many illnesses, diseases, disabilities (eg. fatigue, depression, social isolation, poor self esteem)
- negativity in highlighting patient factors which are seen by the writing team as impeding recovery and in minimising patients own coping strategies
- minimum inclusion of patient experience and maximum emphasis on opinions held by the writing team
- advice to doctors which is disempowering to patients
- authoritative statements which are not supported by longitudinal studies
- emphasis on physical exercise by defining activity as being only physical with minimum mention of mental effort
- include an understanding of the CFS continuum with positive management strategies identified by patients for all levels of the illness
- highlight positive coping strategies and avoid labelling CFS patients as failures
- acknowledge that for some, CFS is an illness of deterioration or, at best, of failing to recover
- provide coping strategies to deal with fluctuating symptoms
- develop an understanding that onset of CFS can be insidious, especially in children and adolescents
- incorporate a "big picture" appreciation of health regarding symptoms which are common to many illnesses, diseases, disabilities including, but not unique to, CFS
- include evidence of longitudinal studies to support the many authoritative statements made in the document OR delete these statements especially with regard to cognitive behaviour therapy for children and adolescents
- open up the discussion to investigate the need for more sophisticated laboratory tests to diagnose CFS. Failure to confront this is obviously a cost cutting exercise far removed from a sound scientific approach
- empower doctors to empower patients
- adopt a global (rather than parochial) approach by acknowledging the diversity of worldwide research into CFS including neuroscience and vascular studies
3.0 TO CONCLUDE
3.1 Today, both medical personnel and their patients have quick access to worldwide information via the internet and are, understandably, quick to identify bias, omissions and filtering of information.
3.2 In today's social climate input from clients (be they consumers, patients, shareholders) is considered a legal right and because of its practical and empirical nature, an important part of any guidelines document.
3.3 Today's society perceives reality in terms of both qualitative and quantitative research with an emphasis on client (ie. patient) experience. By contrast, medicine's sole emphasis on an evidence-based approach appears out-of-touch with reality. A Guidelines document on any medical condition needs to pursue balance rather than create division.
3.4 There is a considerable amount of literature available to support the most disempowered CFS group – children and adolescents – and their carers and teachers. It is recommended that availability of this material be included in the Guidelines, including contact details.
3.5 Wise doctors and patients living with CFS would acknowledge that the most productive patient ¤ doctor relationship is based on 2-way dialogue, each learning from the other. The Guidelines Draft fails to adequately encapsulate the spirit of this relationship and its potential.
3.6 No medico is an island. No medical writing team can ignore the diversity of worldwide research into CFS and expect credibility.
3.7 Thank you for the opportunity to comment on what it is hoped is "Revised Draft 2" (title page) and not "this final version" (page 64).
Maureen A. Stephenson
Alison Hunter Memorial Foundation
Alison Hunter Memorial Foundation
PO Box 6132 North Sydney 2059 Australia
Phone/Fax +61 2 9958 6285
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