CFS Health Consumer Perspective:
An Introduction

PwCFS - an explanation:

From a "health consumer’s" point of view, the designations "patient" and "sufferer" are terms which endanger the person's individuality and have the potential of placing them in a subsidiary, disempowering, "victim" role in relation to illness and health care professionals. Consequently, from the precedence created with other chronic illnesses/disabilities, those with the illness, CFS, will be referred to as "people or (person) with CFS" or "PwCFS."

The Consumer Health Forum Representative

The Consumer Health Forum Representative was nominated by representatives of Australia-wide CFS Societies and some Support Groups. The nomination was then considered by the Consumer Health Forum of Australia (CHF) and a subsequent appointment was made.

Because of the relatively unique nature of this project, few guidelines and roles were apparent when being appointed to this position in early December 1996. The representative, in consultation with the CHF, developed and discussed roles and ways of working as necessary.

The prime roles became apparent early. That is, the CHF representative was to provide a channel of information from CFS Health Consumers (through written letters and submissions, facsimile, e-mail, telephone) to the Working Party. The CHF Representative conveyed this information by use of a Compilation Document, a CFS Consumer Health Document (both explained below), electronic communication, personal meetings and meetings of the Working Party.

The representative attempted to do this in an un-biased way as possible; neither expressing opinion nor favour to any particular representation or any people or persons with or without CFS. Whilst the representative was an advocate for people with CFS in the wider sense, the representative could not become an advocate for individuals or groups with one particular viewpoint no matter how valid they thought that viewpoint may have been.

Consequently the two written documents below have been prepared in an endeavour to portray as accurately as possible to the Working Group what people with CFS were actually saying.

The Submission Compilation Document

In response to the Guideline-process, 80 submissions were received from CFS Societies, members of CFS Societies, support groups, concerned individuals, carers, and other people with the illness. Using a matrix process one document ( 1 ) was compiled which ordered all the information in all submissions into one or more of the seventeen topic areas associated with the Working Group’s consideration. Useful evidence in the form of consensus-type views became apparent. These provide the basis for the comments throughout this CFS health consumer perspective, with direct health consumer quotations italicised and enclosed in boxes.

The purpose of the CFS Consumer Perspective

The purpose of this document is to convey to the RACP Working Group, in summary form, the issues, comments, and concerns of CFS health consumers which need to be included in an explicit manner within the Exposure Draft and, later, within the finished Guideline Document. The contents of this document could either stand alone or be incorporated within the clinical practice guidelines.