HOME Canberra Fibromyalgia & CFS Pages Australian info || CFS Guidelines

rainbow rule

CFS Health Consumer Perspective:

Contents | Introduction | The Experience of CFS | Consequences | Management | Appendices

CFS Health Consumer Perspective:
Appendices

A. Figure 1: A support & resource network for people with CFS
Information
Telephone, email, Listserv., Internet, CFS Societies & support groups, bookshops, libraries, tapes, videos
Assistance with personal issues & chronic illness
Life skills (communication, conflict resolution, relationships etc.), self-concept, self-awareness, belief systems
Collaborative Health Care
General Practitioners, Specialist Physicians, "Alternate" Health Practitioners - with associated ameliorative treatments
Person with CFS
Meeting of special needs of
Young people: schools, distance education, youth workers, CFS Societies and young people's support groups.
Carers, partners: relationship awareness and counselling, respite care, grief awareness
Ancillary Services
Home care, home nursing, meals on wheels, HACC services
Personal Support from
Families, friends, school staff, work colleagues, partners, social groups, church/religions, community groups
Specialist Advocacy
by social workers, politicians, lawyers, CFS Societies, CFS support groups, people in relevant positions able to achieve or promote change
Specialist Care/ Concerns
pain management, respite care, loss/ grief counselling, chronic illness management courses, disability design and product centres, CFS Societies, social workers, social psychologists, rehabilitation counselling, generic counselling.
Legal/ financial Assistance
Medico-legal issues
Financial support
Social Security
Superannuation/ Workers
Compensation/ Total & Permanent Disability
Payout
Childcare
Debt-help organisation
Transport/ parking concessions


B. Figure 1: Questions often asked of people with CFS, carers, partners and their children
  • What do all the different names of this illness mean?
  • What causes the CFS?
  • How is CFS diagnosed?
  • Why are there so many symptoms
  • Does everyone have all these symptoms?
  • What is the treatment for CFS?
  • How is CFS managed?
  • How long will CFS last?
  • Why do I feel so anxious/ panicky?
  • Who can I turn to for help?
  • What about "alternative"/ complimentary therapies - are they helpful?
  • Can I "push through" this illness?
  • Should I give up my job?
  • How do I keep my marriage/ family together
  • What will happen next?
  • Why am I so angry/ depressed etc?
  • Am I going mad?
  • Am I imagining all this - is this all in my head?

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

  • How much should I exercise?
  • Can you help the pain?
  • Can you help me remember things?
  • Should I drive a car?
  • How do I live without an income/ with such a reduced income?
  • Is my life worth anything now?
  • What do they mean "coping leads to healing?"
  • Should I go to bed for a few weeks/ months?

Statements often made (or thought) by PwCFS

  • Slick simplistic answers mean nothing to me but frustration
  • refer me on if you are unable to assist me
  • listen to me; be patient
  • help me to help myself with good management regimes and techniques
  • your empathy and skills can lead me to healing
    •

© Craig Ellis (1997)
Revised July 1998

Top || Guidelines || Australian information

thin rainbow rule Canberra Fibromyalgia and Chronic Fatigue Syndrome Pages         Webmaster      last revised 8 February 2002