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ME/CFS AUSTRALIA (SA) INC

Registered Charity 698

Email:
sacfs@sacfs.asn.au

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PO Box 28,
Hindmarsh,
South Australia 5007

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Hackney, SA, 5069


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ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.

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ME/CFS Australia (SA) Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.

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Australian National Register Of Environmental Sensitivities

Wednesday 20 May 2015

 

From Sharyn Martin (via email):

 

ANRES
 

Australian National Register of Environmental Sensitivities

The prevalence of Environmental Sensitivities is largely unknown in Australia.

ANRES (Australian National Register of Environmental Sensitivities) aims to provide the background evidence to highlight the need for recognition and assistance. Statistics are needed for reform, particularly at a political level.

This is not a government action but an independent initiative to gather data in the hope of influencing government decisions. Persons who register on this site will not be individually identified; their data will be kept private and secure.

If you have environmental sensitivities or are a carer of someone with environmental sensitivities please take the time to:

  • Firstly, become a member of ANRES – membership is free; and
     
  • Secondly, register your environmental sensitivities by following the link below or menu on the left of the page so you can contribute to the recognition of these medical disorders.

The register includes conditions such as Multiple Chemical Sensitivity, Chronic Fatigue Syndrome/ME, Lyme disease, electromagnetic hypersensitivity (EHS) and food intolerances. Many of these conditions co-exist. For example a person with MCS may also suffer CFS and food intolerances. It is important to collect this information to determine the overall impact on health and lifestyle.

You can assist by registering your support on the ANRES website: www.anres.org

Collecting numbers will not bring about immediate changes but it is the first step in gaining recognition of environmental sensitivities, which are largely invisible functional impairments or disabilities.

We need to create the will for action.

PDF Download ANRES Flyer (PDF, 35 KB)

Word Download ANRES Flyer (Word document DOCX, 209 KB)

 

The Formation of ANRES:
Australian National Register of Environmental Sensitivities

www.anres.org

Who We Are

  1. Dr Ian Buttfield, MBBS, MD, FRACP, PRACMA, retired Specialist Physician and member of the South Australian MCS taskforce Committee
     
  2. Dr Sharyn Martin, PhD, former active member of ASEHA and ASEHA webmaster, NSW
     
  3. Lucinda Curran, MA, BA, Building Biologist and Chinese medicine practitioner, VIC

What We Are Proposing

Australian National Register of Environmental Sensitivities (ANRES) aims to:

  1. Gather the actual numbers of Australians with environmental sensitivities (ES) and environmental illnesses - from MCS, to EHS, to CFS and other related conditions;
     
  2. Be a centralised site to collect information on the prevalence of environmental sensitivities in Australia.

ANRES will be a place where individuals with ES can register their support for change, simply by adding their name to the numbers. There will be no fees involved.

ANRES will be a place where support groups can register their support, linking in with other groups, which is beneficial as grant submissions carry more weight when they are endorsed by other organisations.

ANRES will be a place where medical practitioners can register their support for people with ES.

Why Has This Come About

Sharyn Martin was contacted by Dr Ian Buttfield, to say that the South Australian MCS Taskforce Committee could not continue due to government funding shortages. This committee made several significant achievements but many more issues need to be addressed.

Ian is currently lobbying a SA politician to call for the re-establishment of this committee in SA. To emphasise the need for this committee to be re-established, the numbers of Australians suffering from ES are needed to support this action.

The South Australian MCS Taskforce Committee is needed to promote an effective website to better educate medical practitioners and members of the community on this condition.

Many sufferers experience isolation and disability that largely goes unseen and/or unheard within the community.

The misunderstanding of this condition by medical practitioners and the community has meant that basic medical and social needs go unmet.

An ASHEHA survey of 50 people with MCS in 2011 found a significant degree of disability and isolation amongst the survey participants. The majority of people had suffered this condition for 20 years or more. A large percentage was unable to access the health services they needed due to chemical contamination of indoor air, inability to meet strict criteria or financial distress.

What ANRES Isn’t

We are not trying to form another organisation, support group or trying to run or co-ordinate anything.

We are simply creating a national register to add quantitative data to work towards getting ES recognised as a disability (or functional impairment) and facilitate moving forward with issues such as access to medical and disability services.

What ANRES Might Do

Political change requires numbers, hard facts and real figures. We hope to provide this.

When negotiating with the government and/or government departments, statistics on how many people are affected will be needed. The more facts we can provide, the easier it will be for effective changes to be made.

While this project was initiated in response to the situation with MCS, there is considerable overlap with other conditions such as CFS/ME, fibromyalgia and electromagnetic hypersensitivity (EHS), and so on. We think that collecting data on all ES conditions will give a clearer picture of the overall prevalence of environmental sensitivities in the community.

We intend that the data collected by ANRES would be made available to support any of the groups in making submissions to government and/or health departments.

The formation of a national register will illustrate the need for change with actual numbers.

Again, to be clear, we have no intention to encroach on any existing groups. We want to collect data with the goal of facilitating changes for ES. We want to support groups in their work. We want to support individuals in making connections and finding the right groups for them. We want to educate the public and inform the medical profession.

Persons who register on this site will not be individually identified, their data will be kept private and secure.

Support Groups: We hope that you will register your support for the project and share information about ANRES with your membership. Your presence on the ANRES website may assist individuals in finding the right support group for them.

Medical and Health Practitioners: Please show your support for this project by registering yourself and/or your practise. Please share the information about ANRES with your patients and colleagues and encourage them to register.

Please Help

We ask that you share information about ANRES with relevant groups and people and encourage everyone to register.

Yours sincerely,

Sharyn Martin and Lucinda Curran

PDF Download ANRES Project 2015 (PDF, 42 KB)

Word Download ANRES Project 2015 (Word document DOCX, 162 KB)

 

 


 

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