AHMF: Guidelines response Budd

Laurence E Budd MB BS

Thankyou for the opportunity to comment on the Revised Draft 2001Guidelines.

This document reflects an extensive examination of a difficult subject. In my view it epitomises limitations with the scientific methodology and the application of "evidence based medicine". Inevitably conclusions have been reached that represent opinion or consensus view, rather than a statement of the obvious that insufficient evidence exists to allow an accurate and definitive conclusion to be reached. That a number of similar opinions can be assembled from published sources is not in itself "evidence" that an opinion or point of view is correct. The history of medical practices and opinions is littered with consensus points of view that eventually have been shown to be incorrect — the history surrounding Emmanuel Semmelweiss and puerperal sepsis is simply one glaring example with which I am familiar.

The really positive feature of this document is acknowledgement of the reality of CFS, and the responsibility of the medical profession to support and assist those afflicted by this condition not only in a physical sense, but socially as well by acting as advocates for sufferers in their work situation.

Importantly the document accurately identifies:-

CFS as an abnormal physical state.
CFS does not have a defined aetiology or pathophysiology, and is probably heterogenous in aetiology.
CFS cannot be characterised by currently available pathology testing technologies.
CFS treatment is determined by the individual needs of afflicted people, and requires physical as well as psychologic support. There is not one "best practice" method of treatment. Patients may react adversely and unpredictably to commonly used pharmaceuticals.
Prognosis is variable.
CFS patients are vulnerable to unsubstantiated claims regarding aetiology and treatment from orthodox medical and unorthodox sources.
CFS patients are at risk of being marginalised and isolated by the use of inappropriate medical, psychiatric, and psychologic diagnoses.
Application of the "scientific method" to this condition is difficult.
There is a substantial economic cost borne by afflicted individuals and the community generally.

There are some specific issues, in my view, that cause concern as to how these "guidelines" may be used.

Proscribed pathology testing as "recommended" and "not recommended". In the absence of characteristic pathology technology, novel and innovative testing procedures are essential in trying to determine an understanding of aetiology as well as pathophysiology. "Science", surely, is by definition the application of novel and innovative strategies to reach understanding in exactly this situation. How can the "recommended" tests progress the process of understanding CFS? By all means encourage an acceptable research methodology, but to restrict testing to a range of tests that cannot define the aetiology or pathophysiology of CFS is anti-scientific.
Multiple Chemical Sensitivity is barely mentioned, and when mentioned dismissed as irrelevant. This is an unfortunate position for the committee preparing the Draft Guidelines, suggesting adoption of consensus opinion rather than due consideration of all possible aetiologic factors. The omission of MCS raises serious questions as to the scientific credentials of the document. Perhaps MCS is a politically uncomfortable concept in this country at this point in time, but political sensitivity is not a valid scientific reason to ignore the obvious cross-over of symptoms with CFS. I believe it is unfortunate that MCS is ignored in this document. I don't believe any Guideline document will have validity if MCS is not given due consideration and recognition.
Some concern is expressed about attempts to manage CFS by dietary and nutritional means by alluding to "occasional" adverse results regarding "significant weight loss" and "concerns about eating disorders". Unfortunately similar concerns regarding adverse events from common pharmaceuticals, especially the neuropsychiatric compounds, are ignored. To be fair, some acknowledgement is given to unpredictable responses to some medications, but the inference in the document that diet and nutrition strategies are inherently wrong is not a fair representation of such strategies - particularly when there can be significant and, worryingly, unpredictable adverse reactions to orthodox treatments.
I am uncertain about the accuracy of the incidence and prevalence of CFS. Case ascertainment is clearly difficult across the whole population. Simple logic means that determining the validity of testing procedures and treatment strategies is problematic. The scientific tools currently in use may be the best available, but failure to recognise their limitations can only complicate an already complex disorder. What confidence is there that the Guidelines will remain "guidelines" and not become dogma?

I welcome the Draft Guidelines and the opportunity to comment. My comments are made in good faith and based on professional experience with afflicted people including adolescents and adults. CFS is a complex disorder that can have a devastating impact on those affected and their families. My personal experience with CFS patients clearly indicates that the medical profession has an obligation to provide professional support of the highest integrity, despite the many unknowns and difficulties in understanding a most puzzling and complex disorder.

Yours faithfully,

Dr Laurence E Budd
Consultant Paediatrician
10 Glenreagh Street
PO Box 1653
COFFS HARBOUR NSW 2450
Phone (02) 6652 4499
Fax (02) 6651 4381