Home Conference 2002 Site Map INFORMATION Links Background Info symptoms Merle's story

 

HOW THE ME/FM COUNTRY NETWORK STARTED. 

I was diagnosed with Myalgic Encephalomyelitis in 1986 by Professor Denis Wakefield I put an ad in the Northern Star the local newspaper for anyone with M.E to ring me. I received over 12 phone calls from people in Lismore and Ballina. We had our first meeting at the Carroll Centre at St Vincent's Hospital Lismore and started the Lismore M.E support group. A few years later I was diagnosed with Fibromyalgia. The office of this support group was in our home at 17 Peate St Lismore and quite a lot of our activities carried out there. As our numbers grew our local politician the late Bill Rixon, who was also our one of our patrons helped us to become an Incorporated Association. The members of the Lismore M.E support group established the first M.E/FM Country Network in Australia. For over 18 years this small band of people provided a service to many local, regional people including many people Australia wide afflicted with this illness, their carers and families.

The Lismore support group was one of the support groups of the ME/CFS Society of New South Wales. Lismore is situated over 600 miles north of Sydney where the ME/CFS Society social worker is based.

In 1991 the Lismore support group organised the first two day International M.E Conference to be held in a rural city. This was followed by numerous  M.E/CFS/FM seminars/conferences from Tweed Heads to Coffs Harbour with many International research speakers on Myalgic Encephalomyelitis and Fibromyalgia.

We carried out ongoing surveys from 1987 to 2002 into the prevalence and problems sufferers had associated with this illness. Including surveys with carers and school students, plus the medical profession as to their acceptance of ME. 

The Lismore support group applied for funding for a social worker. Thus in 1992 this group received the first Federal Funding for a social worker in rural NSW. Due to the  rapid growth of  people affected with this illness, the management committee felt that people needed a rural voice. Therefore the Northern Rivers ME/CFS/FM Support Association was established and became an incorporated organisation in 1993. Creating a separate body from the ME/CFS Society of NSW. 

At this point in time there was no National ME/FM organisation in Australia, and after many discussions with our Patron Bill Rixon MP and Patroness The Hon Janelle Saffin MLC  and interested parties, the ME/FM Country Network, Australia was launched in 1996 as a sub group of the Northern Rivers ME/CFS/FM Support Association. This being the first registered National ME/FM organisation in Australia that published a quarterly newsletter for their members, this always included the financial statements. This was always available to others, with a small copying charge and postage where applicable.

In 1993 we invited Dr Les Simpson, research biologist,  from New Zealand to Lismore to speak about the shapes of the red blood cells and the consequence lack of oxygen to the brain. Following Les's initial visit to Lismore we sent many blood samples to him in New Zealand for a red blood cell analysis. And in conjunction with Southern Cross University carried out trials into the benefit of evening primrose oil  as a management for people suffering from M.E/CFS.

Through the Area Assistance Scheme and Northern Rivers Area Health Service this Association received a small funding grant for five years. This assisted with funding a couple of conferences including the production of the quarterly newsletter, which was exchanged with other M.E/CFS/FM groups in the UK, Ireland, USA, Canada, New Zealand and South Africa.

Although we submitted many applications for further funding we never received any. Due to my illness, no funding and corrupt actions from Lismore City Council, this Lismore based M.E/CFS Country Network closed down At the Association's AGM  in February 2004 a new management committee was elected, this group only have meetings at Tweed Heads.

It is a sad situation that we now do not have a national ME/CFS/FM Association in Australia that publishes a newsletter for members. At present I am writing a book about my experience with M.E/FM and the work done by the Lismore Northern Rivers M.E/CFS/FM Association and Country Network.

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NSW Legislative Council Hansard

 

Speakers: The Hon Janelle Saffin   Speech Type: ADJ; Adjournment

 

MYALGIC ENCEPHALOMYELITIS NETWORK


The Hon. JANELLE SAFFIN [4.17 p.m.]: I wish to place on record a plea for assistance and recognition from the M.E/FMS Country Network Australia. It is clearly articulated in a letter forwarded to me by that organisation. I am the patroness of the network and Bill Rixon, the honourable member for Lismore in the other place, is the patron. He and I have had a long and rewarding involvement with the organisation, providing support, advocacy and advice of a strategic and legal nature. The chairperson of the organisation, Mrs Merle Fullerton, a very active and highly regarded community member and Lismore resident, is the recipient of the Premier’s community service award, which she received at an international ME conference dinner. The award was present by the master of ceremonies at that function, the Hon. Dr B. P. V. Pezzutti, on behalf of former Premier Nick Greiner. I extend to Mrs Fullerton my commendation for her unfailing work in bringing to the attention of members of Parliament and public servants the nature of the illness, Myalgic encephalomyelitis, and the frequently devastating effects of the illness on sufferers and their families. The letter, which is dated 3 May, stated:

Dear Janelle

I [am] writing to you as an advocate for our members who are afflicted with the devastating condition ME, Myalgic Encephalomyelitis, more commonly known as CFS, Chronic Fatigue Syndrome, and Fibromyalgia. I was first diagnosed with ME in 1983 and later with Fibromyalgia. My condition is gradually worsening, making it harder for me to carry out the support and advocacy work I do for others.

Since you are an influential Government Representative who can demand a great deal of attention to specific issues, I urge you to consider carefully the information contained in the ME/CFS Charter 1998. This is where you come in, as a public servant and representative of your constituents. I implore you to use your power to help us by making representations on behalf of your constituents to make representation to the Premier regarding this serious situation these people find themselves facing.


May 11 to 16 was designated as International ME/CFS Awareness Week, during which the organisation sought to increase the public’s understanding and awareness of the disease by asking people to wear a blue ribbon. Honourable members may not be aware that this disease is striking a growing number of people around the world. The letter continued:

It is estimated that approximately 3 million people are affected in Australia. This is one of the chronic conditions doctors are faced with each day with no known cause or treatment. Our running costs have increased by approximately $16000 last year. We have been appreciative of a yearly donation from Area Assistance scheme of $5000. At present this keeps us going for 3/4 of the year. We are desperately in need of physical and financial help with administration.

Unfortunately, governments have been slow to respond to our plea for more funds to be made available for administration and research.

If a cause and cure are to be found for ME/CFS in the near future, government, medical institutions and the public in general must be fully aware of the devastation and despair this debilitating illness can cause, not only to the person affected but their family as well. Deaths from complications go unrecorded.

My concern, frustration, and anger stem from the reprehensible lack of recognition, and thereby support, from Official Government Ministers to the plight of people with ME/CFS. This devastating, painful and disabling disease effectively stops the sufferer from living or participating in life to any normal standard. In simple terms a sufferer is sometimes bedridden, often for years, and cannot function in any regular fashion without direct assistance. They are in constant and agonising pain, physical and neurological

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symptoms effectively isolate a person with ME/CFS resulting in silent suffering as they are incapable of communicating their pain to a wider community.

We require and deserve rightful recognition, ACTION AND FUNDS, to carry on with this work.

People with ME/CFS/FM and related disorders have been discriminated against for decades. It is now time to rectify this appalling situation by seeing that the accompanying ME/CFS Charter 1998 is tabled or acknowledged in State Parliament.


I seek leave to table the ME/CFS charter.

Leave granted.

 

M.E/FM CHARTER 2000

(This was the first M.E/FM Charter 2000 to be produced by a ME/CFS/FM Association/Society in Australia. It was adopted by the former "Lismore" management committee of the Northern Rivers ME/CFS/FM Association and read in the NSW Parliament by the former Patron Janelle Saffin MLC, This was never accepted by parliament and is urgently needed)

MYALGIC ENCEPHALOMYELITIS (M.E) ( Chronic Fatigue Syndrome CFS) FIBROMYALGIA (FM)
Our mission is to provide support for people affected by M.E/FM.

  1. Promote research into the cause and treatment of these conditions
  2. Equal rights of access in all Aspects of Medical Care

  3. The need for this Charter:
    To change the use of the name from CFS back to Myalgic Encephalomyelitis
    To gain better recognition as a physical disorder, with better diagnosis and treatment
    Better acceptance by the public at large
    To this end, communication and co-operation between the professionals is the grand vision.

The Charter.

  1. All States, Territories and Commonwealth Governments of Australia to recognise the fundamental rights and needs of people with ( M.E) Myalgic Encephalomyelitis (also known as CFS) and (FM) Fibromyalgia

  2. The name Chronic Fatigue Syndrome (CFS) be replaced with Myalgic Encephalomyelitis (M.E) which is recognised by the World Health Organisation

  3. The revised version of the Clinical Practice Guidelines for CFS, by Drs Lloyd, Hickie and Loblay, (first published in MJA 1997) needs to be peer reviewed and to be acceptable to treating doctors/clinicians with a sound knowledge of M.E/CFS/FM including consumer advocate groups, before being published in a medical journal .

  4. Medical and health professionals include the organic physical abnormalities of M.E/FM in their respective Colleges training curriculum.

  5. A National database be established to register/record the severity/deaths from ME/FM similar to the register for AIDS. This register should assist in promoting awareness and help to encourage further research.

  6. All aspects of medical care including diagnostic/pathology tests as required by their physician, to be covered by Medicare/Medical Benefits.

  7. Children of all ages with M.E/FM to be treated with dignity, respect and humanity.

  8. Equal rights to services for patients with M.E/CFS/FM, families and carers as those with any other chronic illnesses.

  9. Equal rights to employment/education/income support for people with M.E/CFS/FM.

STATISTICS

To date there is no global monitoring of the disease, no global documentation of its natural course, and little global recognition of the burden of illness to the individual, families or the community. The true story of M.E/CFS has been ignored

This Charter is endorsed by BRAME, Blue Ribbon for the Awareness of Myalgic Encephalomyelitis (UK).

National CFIDS Foundation, (USA). Chronic Syndrome Support Association (USA)

Lifeline Northern Rivers, Lismore. Just to name a few.

The M.E/FM Charter 2000, including letters from sufferers saying how this illness has affected their lives, was sent to NSW & Commonwealth Politicians asking for it to be tabled in State and Federal Parliament .

 

 

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