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ME/CFS SOUTH AUSTRALIA INC

Registered Charity 3104

Email:
sacfs@sacfs.asn.au

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PO Box 322,
Modbury North,
South Australia 5092

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ME/CFS South Australia 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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Society seminar presentation

Saturday 5 June 2010

ME/CFS Australia (SA) IncThe Society's recent seminar held on Saturday 8 May [see earlier news item for full details] focused on Multiple Chemical Sensitivity.

One of the speakers, Peter Evans, has kindly provided a copy of his talk:

Multiple Chemical Sensitivity: a public health concern

Today's Presentation on MCS

  • What is Multiple Chemical Sensitivity
  • The work of the SA Task Force on MCS
  • Progress on MCS in Australia

What is MCS?

  • Reports of unusual sensitivities to low levels of chemicals first appeared in medical literature in the 1950s. Then called "the petrochemical problem" by medical researchers.
  • Media reports on the problem since the 1970s referred to different names including "total allergy syndrome" and "allergic to the 20th century."
  • 1987: The term Multiple Chemical Sensitivity was first used by medical researcher Cullen in a publication on occupational medicine.
  • 1999 MCS is defined by an international group of researchers as:
    [1] a chronic condition
    [2] with symptoms that recur reproducibly
    [3] in multiple organ systems
    [4] in response to low levels of exposure
    [5] to multiple unrelated chemicals and
    [6] improve or resolve when incitants are removed.

Symptoms of MCS

  • Symptoms include:
    – Fatigue
    – Musculoskeletal pain
    – Gastrointestinal problems
    – Memory and concentration loss
  • There is significant overlap between MCS, CFS and fibromyalgia.
  • Between 30% and 60% of people with CFS and fibromyalgia also qualify for a diagnosis of MCS.

MCS and other chronic illnesses

  • Symptoms of MCS also overlap with numerous other chronic medical conditions including:
    – infectious diseases
    – autoimmune disorders
    – coronary heart disease
    – kidney disease
    – lung disease (including asthma)
    – psychiatric/neurological conditions

Treatment for MCS

  • There is no known cure for MCS.
  • Many people report fluctuations in the severity of their illness. Some may improve over time.
  • The most effective treatment for MCS is avoidance of chemicals, medications and foods that trigger symptoms.
  • Treatments focus on alleviating individual symptoms and can include medications and nutritional supplements.

What causes MCS?

  • The exact cause of MCS remains unclear but is likely to be a combination of environmental and genetic factors.
  • MCS appears to occur in two phases:
    – The first phase follows exposure to an initiating chemical most commonly pesticides, solvents, petrochemicals, harsh cleaning agents, new building materials.
    – In the second phase sensitivities broaden over time to include numerous unrelated chemicals. Some of the most problematic products include perfumes, pesticides, tobacco smoke, vehicle exhaust, cleaning agents, new building materials.
  • There are over a dozen proposed mechanisms to explain MCS most of which present a physical rather than a psychological cause.

How many people have MCS?

  • National and international data suggest that between 1% and 6% of the population have been diagnosed with MCS.
  • Around 2% of the population cannot work due to MCS.
  • Up to 30% of the population report unusual sensitivities to common chemicals. These people may be at risk of developing MCS.
    Work of the SA Task Force on MCS
  • The Task Force began operating in 2001 with the aims of
    1) raising awareness of the serious public health problems associated with many common chemicals and
    2) ending the widespread discrimination facing people with MCS.
  • Based on an activist model.
  • Public health rallies recognising MCS held at state parliament, local government offices, the Department of Health, and Office of Chemical Safety.
  • Numerous meetings with politicians and bureaucrats.
  • Liaising with community groups with similar environmental and public health interests.
  • Working with disability and community services to implement MCS related disability access and occupational health and safety policies.
  • Lobbying national agencies such as the Human Rights and Equal Opportunity Commission for the development of comprehensive disability access guidelines on MCS.
  • Assisting people with MCS to lodge disability discrimination complaints.

State Progress on MCS

In 2005 a Parliamentary Inquiry into MCS made numerous recommendations including:

  • Monitor the prevalence of MCS.
  • Produce and distribute MCS educational materials.
  • Establish an interdepartmental committee, the MCS Reference Group, to guide debate and provide updates on MCS.
  • Establish herbicide no-spray registers with local councils to assist residents with MCS.
  • National research into MCS.
  • Review of the adequacy of national chemical regulation with respect to MCS.
  • Develop hospital guidelines for patients with MCS.
  • Assist people with MCS with disability access to health and community services.
  • Apart from establishing the MCS Reference Group, none of the recommendations have been fully implemented by the state government.
  • MCS Hospital Protocol is complete but not published.
  • No-Spray Registers are still in the policy development phase.
  • No comprehensive disability access guidelines have been produced for health and community services.
  • Limited MCS related guidelines exist with respect to access to government buildings.
  • Mention of MCS as a special needs group was included in the state government's review of health care services.
  • The Department of Primary Industries' Chemical Trespass Unit is aware of MCS related issues and responds quickly to complaints relating to neighbours' use of pesticides affecting people with MCS.
  • The state government's fruit fly eradication program keeps a register of people with MCS who are notified of any fruit fly outbreaks requiring the use of pesticides in the metropolitan area.

National Progress on MCS

  • Australia's national chemical regulators, the Office of Chemical Safety and the National Industrial Chemical Notification and Assessment Scheme, have almost completed a review of MCS medical literature with the aim of identifying future research needs.
  • Community groups have criticised the report for being biased towards psychological explanations of MCS.
  • In the last few years MCS has been recognised as a legitimate disability under state and federal equal opportunity laws (see HREOC website).
  • A national review of building code legislation for disability access to buildings refused to include considerations for MCS citing lack of research and poor scientific understanding of MCS as the reasons. The review's authors referred to disability discrimination legislation as a possible remedy.

Conclusion

  • Vested interests in industry opposed to MCS combined with a lack of medical interest and research is inhibiting developments.
  • There are obvious comparisons between MCS and the global warming scenario.
  • Very slow progress is being made on MCS mainly due to the large and growing numbers of people disaffected by the illness.
  • Australia remains decades behind other industrialised Western nations with respect to its public health and disability access policies on MCS.
  • People with MCS who feel they are being discriminated against with regard to access to goods and services can consider lodging a complaint under state or federal equal opportunity laws.

The report can be download here:

PDF

Multiple Chemical Sensitivity: a public health concern (PDF, 248KB)

Two relevant documents can be download here as well:

PDF

Government of South Australia – Department of Health:
Multiple Chemical Sensitivity: Guidelines for Hospitals
(PDF, 92KB)

PDF

US Department of Health & Human Services – Centers for Disease Control:
Indoor Environmental Quality Policy
(PDF, 103KB)

 


 

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