ME patients forgotten in government decision-making

book with blank pages

by Sasha Nimmo

Myalgic Encephalomyelitis (ME) affects between 96,700 and 241,800 Australians (0.4%-1% of the population) and there is no treatment or cure. Why aren’t medical research or services funded fairly, equivalent to other diseases?

Recently, Myalgic Encephalomyelitis (and chronic fatigue syndrome) were excluded from the Australian Institute of Health and Welfare’s (AIHW) Australian Burden of Disease report, which only comes out every decade.

AIHW’s role is “to provide reliable, regular and relevant information and statistics on Australia’s health and welfare. Governments and the community use our reports and data in discussing, debating, and making policy decisions on health, housing and community services matters”.

If ME is not included in government reports, then patients are not even considered when it comes to making decisions about research and services, so no money is allocated.

The AIHW offered up contradictory explanations for excluding ME and chronic fatigue syndrome: that no data was available for it to be included, but that they were included in ‘other neurological’.

“The list of diseases/conditions for Australian Burden of Disease 2011 was based on a set of criteria for inclusion that was applied consistently across all disease groups. Unfortunately, there were no recent robust data on the prevalence of CFS/ME that satisfied the criteria for diseases to be included in this study. The Australian Burden of Disease Study 2003 estimates for CFS/ME relied on epidemiological studies that are now out-dated,” Miriam Lum On, Australian Burden of Disease Unit, Australian Institute of Health and Welfare said.

The AIHW also said,”chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is captured within ‘other neurological conditions’ in this study” without explaining how they calculated figures for inclusion.

Overestimating recovery

Parliament was told that 75% of Australians with ME and CFS recover. The real figure is closer to 5%.

That is a difference of up to 170,000 people in Australia but the House of Representatives  Health Committee’s report on Chronic Disease Prevention and Management in Primary Health Care states ‘around 25 per cent [are] so profoundly affected by the condition they don’t recover’.

Why would the government allocate funding for medical research and treatment if it is told that most patients recover without it?

“The information that appears in the Health Committee report to which you refer was sourced from the Emerge Australia website and was correctly quoted and accurate as of the time of the publication of the report.  Taking this into consideration, it was decided that the report did not warrant any change,” Stephanie Mikac, Secretary, Standing Committee on Health said.

The 2012 International Consensus Criteria primer for medical practitioners says “recovery is rare”.  It will continue to be so if ME continues to be ignored.

If you would like raise these issues you can contact the AIHW or the chair of the Standing Health Committee, Trent Zimmerman, health.reps@aph.gov.au.

Also, you may wish to write the National Health and Medical Research Council and your local member or senator.

9 thoughts on “ME patients forgotten in government decision-making

  1. Reblogged this on andrewpaulkleinblog and commented:

    Date: October 10, 2016
    Author: ME news Australia
    0 Comments
    by Sasha Nimmo

    Myalgic Encephalomyelitis (ME) affects between 96,700 and 241,800 Australians (0.4%-1% of the population) and there is no treatment or cure. Why aren’t medical research or services funded fairly, equivalent to other diseases?

    Recently, Myalgic Encephalomyelitis (and chronic fatigue syndrome) were excluded from the Australian Institute of Health and Welfare’s (AIHW) Australian Burden of Disease report, which only comes out every decade.

    AIHW’s role is “to provide reliable, regular and relevant information and statistics on Australia’s health and welfare. Governments and the community use our reports and data in discussing, debating, and making policy decisions on health, housing and community services matters”.

    If ME is not included in government reports, then patients are not even considered when it comes to making decisions about research and services, so no money is allocated.

    The AIHW offered up contradictory explanations for excluding ME and chronic fatigue syndrome: that no data was available for it to be included, but that they were included in ‘other neurological’.

    “The list of diseases/conditions for Australian Burden of Disease 2011 was based on a set of criteria for inclusion that was applied consistently across all disease groups. Unfortunately, there were no recent robust data on the prevalence of CFS/ME that satisfied the criteria for diseases to be included in this study. The Australian Burden of Disease Study 2003 estimates for CFS/ME relied on epidemiological studies that are now out-dated,” Miriam Lum On, Australian Burden of Disease Unit, Australian Institute of Health and Welfare said.

    The AIHW also said,”chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is captured within ‘other neurological conditions’ in this study” without explaining how they calculated figures for inclusion.

    Overestimating recovery

    Parliament was told that 75% of Australians with ME and CFS recover. The real figure is closer to 5%.

    That is a difference of up to 170,000 people in Australia but the House of Representatives Health Committee’s report on Chronic Disease Prevention and Management in Primary Health Care states ‘around 25 per cent [are] so profoundly affected by the condition they don’t recover’.

  2. So far this year, counting only people I have known, there have been 18 deaths. Some of these were Australians.

    I’ve been severely diabled by M.E. for over 33 years. (when is the recovery supposed to happen?)

    My GP considers me to be his sickest patient. At the rate I’ve been going downhill the past year or so the only surprise is I haven’t already added to this year’s body count. Yet I cannot get services nor supports and there is no specialist my doctor can refer me to

    When I found out the Dept considered my disease so insignificant it gets less funding than hayfever was a real kick in the guts.

    1. Julia, I don’t know what to say. In 33 years you must have seen a lot of reports. I was disheartened yesterday to read an NHMRC report from 1998 where they’d cited CFS as an example of a non-urgent problem, despite the death of Alison Hunter in 1996 and huge number affected.

  3. Sasha, unfortunately things are unlikely to change. Not trying to be negative, but I know the system. To promote change, you not only need advocacy and political support, you also need relevant facts and figures.

    You need things like accurate incidence rates, mortality rates, accurate recovery rates and economic costs. The last one is incredibly important, especially in times of economic constraint.

    These figures have to be local, and not based on overseas studies. It has to relevant to Australia. Overseas research can be used as a foundation for promoting a need to explore these figures, but it will be pointed out that overseas experiences may not be same as those experienced in Australia, You need to establish things factually, and it has to be directly relevant to the Australian experience.

    I would also suggest a need for demographic figures as well. Helps to diffuse tenuous psychiatric assertions about socieconomic status and gender issues. Which is rife in #mecfs and #fm literature.

    Also there is an opportunity cost argument at play here as well. If you allocate funds and resources to #mecfs, it can’t be allocated elsewhere. If there is no recognized diagnosis or treatment, it may be argued that funds and resources are better allocated elsewhere, towards illnesses and conditions that are treatable.

    From an economics viewpoint, a high recovery rate is preferred to a low recovery rate. Why? Simple, patients can return to the work-force and can contribute economically to the economy. Governments of all persuasions, love that type of equation.

    It really is a complex issue, but the cold reality is, only facts and figures usually change policy – especially at a minister or cabinet level, when they have to argue the case to their colleagues.

    As a person with #pwme, I wish it wasn’t so, but it is. To change this, requires a nuanced and multi-pronged advocacy strategy and often takes years to achieve.

    I am little pessimistic about any dramatic changes happening in this space. Sure, a little lip service, and the usual ‘Yes, Minister’ strategies, but little change. What provides hope is that someone like Prof Davis unlocks questions surrounding #mecfs aetiology and pathology, which leads to potential and real treatments. Then it will be GAME ON, and they will start to listen.

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