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This conference was organized by the  Lismore  Northern Rivers ME/CFS/FM Support Association Inc

 Wednesday 6th November 2002 at the Lismore and District Workers Club.

ME/CFS and related disorders "Dispelling the Myths Of Fatigue"

Key Note Speakers

 

Professor Campbell Murdoch MB, ChB, MD, PhD, FRCGP, FRNZCGP Professor and Head of Rural Clinical School, University of Western Australia, Kalgoorlie, WA. He was a family physician in rural practice in Winterton, Southland, New Zealand. He was also Professor and Chair of the Department of General Practice, Dunedin School of Medicine from 1983 to 1992 and a pioneer in research and clinical management of chronic fatigue syndrome at the time when the syndrome had a high prevalence in New Zealand. He is Professor and Head of Rural Clinical School, University of Western Australia, Kalgoorlie, WA.

Professor Murdoch has just co-authored a book with Harriet Denz-Penhey; titled “Chronic Fatigue Syndrome, a Patient-centered Approach”. This book is a must for doctors/health professionals who have patients with ME/CFS or FMS. People with this illness would also benefit by reading this book. Endeavors will be made to see if a copy can be placed in the Tweed Regional Library.  

The illness Chronic Fatigue Syndrome, Myalgic Encephalomyelitis or Fibromyalgia syndrome.

 Extracts from this book:

  “For the modern doctor, this is a difficult if not intolerable situation to be in, and the discomfort intrudes upon our consultations, with these patients. To protect ourselves we call these people “heartsink” patients, choosing to blame the victim rather than admit diagnostic defeat.

 The people who have the symptoms are in an even worse predicament because not only do they have symptoms which have shattered their whole lives, they also have to endure the indignity of not being believed or they have to spend a lot of energy finding a Doctor who does believe in them and their symptoms.  Everyone finds it very difficult to suffer from something which does not exist and they have tended to go from doctor to doctor for a name if not a diagnosis or to join support groups whose purpose seems to be not only mutual support but also action to force the medical profession and researchers into authenticating the symptoms through a proven diagnosis.”

 Message to my Colleagues

“I ask for your patience.  CFS is sufficient indignity by itself; do not compound it.  It takes considerable time and indefinite patience to take an accurate history from a frail patient with impaired memory and concentration, especially if that history is long and complex.   But if you take that time, you can do a world of good.  CFS may frustrate you, but it is equally fascinating and rewarding.  Resist the temptation of hurried, superficial evaluation.  This is no illness for cookbook doctors.  It is a disease for medical intellectuals with supple and open minds.  (English, 1991)”

 Dr Les Simpson PhD, Director Red Blood Research Limited, New Zealand. Discussed: (Unfortunately the Red Blood Research Limited has closed down due to lack of funding).

1) Muscle Phenomena. Muscle function in ME and CFS, people and "fatigue" and the physiology of fatigue and tiredness.

2. Circulatory Impairment. The report of altered blood rheology in ME (1986), the report of red cell shape changes in 1989, and how it relates to Costa's report of SPECT scans in ME. Changes which occur in red blood cells as a prelude to ME / CFS relapses.

3. Cerebral Dysfunction. Memory problems and the consequences of impaired blood flow in the hypothalamus. Dispelling the myth of Wessely's claim that "CFS and psychiatric disorder go together".

Seminar Aims:

bulletTo provide more awareness and recognition that the illness is a genuine physical condition and is much more than just feeling tired.
bulletTo bring the latest information on management and research to sufferers/carers/physician/allied health workers.
bulletObtain funding to establish an ME/CFS office with a Liaison Officer for patients and health professionals

Programme

 Sue Belsham, Director of Area Clinical Service Northern Rivers Area Health Service opened conference and read apologies and well wishes for conference. Northern Rivers Area Health Service did not renew our small  funding grant.

 Dr Les Simpson spoke on muscle function and the shape of red blood cells shape changes in capillary blood flow

Kathy Rose gave an excellent presentation of her daughter's perspective,  including Kathy's own personal perspective of life with ME/CFS. Kathy's story can be seen under "stories" heading.

Welcome Address by Aunty Fay Smith, Bundjalung Elder followed by Aboriginal Dancer: (Fay Smith passed away just after this conference our condolences went to her family.)

 Patron, The Hon Ian Causley MP  thanked Aunty Fay and Dancer and gave a short address.

Above: Professor Campbell Murdoch, Fay Smith and Les Simpson

 Trevor Stephenson, Wills, Power of Attorney & Guardianship. 

GLOSSARY OF TERMS. Brief extract from the Carers Newsletter.

 A person under guardianship: For a person to have a guardian appointed they must be over the age of 16 and have a significant disability which leaves them unable to make certain decisions in their life. This inability can affect the decisions a person needs to make in their personal life, such as where they live or what services they need. Not all people with disabilities require the appointment of a legal guardian, there are usually close friends or relatives who can assist a person with a disability. Where there is no one available to support the person or there are very difficult decisions to be made, a guardian may be appointed to make decisions on behalf of the person with the disability.

A Guardian:  A person who is appointed by a legal tribunal to make important personal decisions on behalf of an adult (over the age of 16) with a disability. You cannot be the legal guardian of a person over 16, regardless of whether you are a spouse/partner or relative unless appointed by the Guardianship Board or the Supreme Court.

  A Private Guardian:  Private guardians are ordinary community members who become the guardian of a person with a disability because of their close and usually long term relationship with that person. Private guardians are appointed by the Guardianship Board and are usually a spouse, partner, relative or friend; they are never a paid carer. Private guardians do not make formal decisions about a person's finances unless they are also appointed as the person's financial manager.

  The Guardianship Board: The Guardianship Board is a legal tribunal which makes decisions as to whether a person with a disability is in need of a guardian, who the guardian should be and what decisions can be made on behalf of that person. The Board is usually made up of three members -a presiding member, a professional member and a community member who may decide to appoint a private guardian or the Public Guardian for personal decisions, or a private financial manager or the Protective Commissioner for financial decisions.

 The Public Guardian: The Public Guardian is a government official, supported by a range of professional staff, who is appointed as the guardian of an adult over the age of 16 who has a disability, an incapacity to make certain personal decisions for themselves, is in need of a guardian and has no one available or suitable to become a private guardian. The Public Guardian does not make decisions about a person's finances.

 Power of Attorney: A person can appoint another person to act on their behalf in areas of property and financial management through a legal document called a Power of Attorney. A Power of Attorney does not enable a person to make medical or life decisions on behalf of another. Future legislation may change this.

 Person Responsible: The person responsible for someone with a disability and an incapacity to make decisions is not a paid carer, but a spouse, de facto spouse, carer or close relative or friend who has had a long term relationship with the person with the disability and is the most significant person in their lives. The person responsible is able to provide consent for the person who has an incapacity, for minor and major medical treatment if the person with the incapacity does not object.

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Evening Programme

Medical and Allied Health Professionals

 Dr Robert Weatherby Lecturer,  Sport Science Faculty Southern University Lismore, welcomed Professor Campbell Murdoch who gave the opening address followed by Dr Les Simpson. One doctor traveled all the way from Frazer Island in Queensland to attend. But after all the letters sent to medical and health Professionals on the far north coast region of NSW none attended. The one interested doctor who attended was warmly welcomed.

 

 

 

 

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