CFS - Health Consumer Perspective

Contents

Acknowledgments

CFS Health Consumer Perspective: An Introduction

• PwCFS: an explanation
• The Role of the Consumer Health Forum representative
  
• The Health Consumer Submission Compilation Document and its relationship to a health consumer perspective
• Purpose of this document

The Experience of CFS

• Perception
• The consequences of illness misnomer
• Symptoms
• An extreme end of the CFS suffering spectrum

CFS - The Consequences

• Support
• Difficulties of living with CFS & some effects of an "invisible disability"
• Discrimination

CFS Management: meeting many needs

• Advocacy
• Individual support
• Accurate diagnosis & informed management
• Dangers of misdiagnosis
• Management: a partnership
• Allowing normal reactions to loss
• Treatment of CFS symptoms
  • Amelioration of some symptoms using "alternate therapies"
  • Other useful strategies
  • Pain management
• Special needs:
• Young people
• Carers &/or partners
• Women
• People in remote &/or rural areas
• Wider support services:
• Strong advocacy
• Ancilliary services
• Respite care
• Childcare
• CFS Support groups
• Research

Appendices

A: Figure 1: a support & resource network for people with CFS

B. Figure 1: Questions often asked of people with CFS, carers, partners and their children

B. Figure 2: Questions often asked of medical practitioners by PwCFS, carers, partners and their children

Statements often made (or thought) by PwCFS

Acknowledgments
I acknowledge, with appreciation, the following people for their assistance with the CFS Guidelines Project, in general, and with the preparation of the Compilation of Submissions Document and the CFS Consumer Health Perspective Document, in particular:

Diana Clifton, Pam Hodson, Tom McGlynn, Michelle Koehler, David Baker, Rosemary Clifton, Max O'Toole, Sharon Clark, Kathy Clarke, Jan Jolly, Jane Ellis, Dr. Joan Rothery, Annela Wheatley, Pat Coughlin.

R.A.C.P. Project Officer, Victoria Toulkidis & Joint Project Leader, Dr. Robert Loblay.

The support of these people has made the task of the CHF Health Consumer Representative so much easier in the preparation, compilation, discussion of ideas, resolution of conflicts and a host of other matters associated with over twelve months involvement in this project.

I also thank:

The authors of each submission who gave of their time, ideas and experience in the good faith that these would be of use to the Working Party.

Those who, because of their disabilities, could not make a submission, but who used others as their advocates.