Aid4Amara YouTube Channel

Wednesday, 7 March 2012

Change for ME Australia

What I want to know is this. If you were suffering. If you were either in and out of hospital or simply so weak that you couldn't function, would you like to think that people would help you? You would wouldn't you?  

What if you didn't have the option of financial support from family. And if your illness for some bizarre reason, even though life threatening and more disabling than many known illnesses, didn't qualify you for government support. If you then were left in a severely disabled state, with no family support, no financial support, and no charity dedicated to helping you. And you couldn't access the medical care you needed and you were young. Young enough that the fifty years stretched in front of you looked like too hard a journey, when frankly the next fifty minutes was too hard.  What would you do?

We all like to think we are good people. We like to think we help. But do we really? How often do you see your sick or elderly family or friends? Is twice a year or even three times, enough?  What have you done to help them lately? Have you asked them if they are okay? Have you asked them what they need? Have you considered that everyone is thinking the same thing, that someone else is helping them?  That it is not really my job, not my responsibility. But if everyone is thinking that, who is left?

I am living with an illness that as many as 200,000 Australians have. And of that 200,000, there are up to 40,000 of us who are house or even bed bound. It makes me so furious I can barely breathe at the injustice of it. We are suffering. We are alone in our fight. And NOBODY is helping us. I couldn't stand by and watch this when I was healthy. And I sure as hell can stand by and watch it now as more and more of my community fall through the cracks, become suicidal and completely disempowered by government and the community's collective deafness to our plight.

We will not let that happen. And I want you to help us do the right thing. I want you to stand up for people who can barely stand up for themselves. This will be looked upon in coming decades as a shameful period in our health history. That people suffered as I do, as we do and nobody is doing anything. Yes there are great doctors doing research and yes there are brave doctors treating us. But they need support, they need help. It is too much, the weight of so many of us on the shoulders of so few. It is shameful. If I had a recognised illness, government would subsidise my treatment and a charity would provide me support.  I would have help with cleaning and cooking, with running errands, with doctors appointments.  There would be choices and options everywhere I looked.

Instead I have ME/CFS and my symptoms have become so acute that in moments I cannot remember who I am. My language has become so muddled that the name of simple things like chairs or tables elude me and in moments the best I can manage is nonsensical noises.  My pain can be so consuming that for days I am stuck in a dark room unable to move. And my weakness so great that my heart strains when I move.

Still when lucid, I cannot stop thinking about my community. My brave, beautiful, strong, courageous community. And I with another ME/CFS warrior started a page to make a positive change for people with ME/CFS. So that future generations do not suffer as we have. We are called Change for ME Australia.

Please watch this video:

And then follow us on Facebook  Change for ME Australia and Twitter Change4MEAu

One day soon.  We will see the positive change that you helped create.  Please join us today and be the change we need to make a more positive future for people with ME/CFS in Australia.


  1. It's crazy, the lack of support and options compared to other diseases. Makes my blood boil too Marzi. There desperately needs to be a supportive infrastructure for people with me/cfs.

    A visit to the doctor should include a discussion of treatment options and life changing strategies. Whereas sadly, you're lucky if they just believe in and have heard of the severity M.E.

    The time for change is now.

    Great post.

  2. You raise a good point Marzi, sadly one that has been around awhile and isn’t confined to just ME, BUT because of the nature of this very illness and the fact that the community at large are still so unaware or uneducated about this illness, and many of our doctors not trained to treat or respect the illness, and they lack the knowledge to do so…and I could on and on, we as an ill population suffer what is known as the “Bystander Effect” in a far proportion greater than would be seen in other illnesses or in other situations.

    I do believe this to be true from 17 years of watching the medical community and the wider community’s general lack of understanding of ME and their following lack of willingness therefore to medically, physically, emotionally, financially, and socially help people with this illness.

    The following is from:

    “The term Bystander Effect refers to the phenomenon in which the greater the number of people present, the less likely people are to help a person in distress. When an emergency situation occurs, observers are more likely to take action if there are few or no other witnesses.
    The most frequently cited example of the bystander effect is the brutal murder of a young woman named Catherine "Kitty" Genovese. On Friday, March 13, 1964, 28-year-old Genovese was returning home from work. As she approached her apartment entrance, she was attacked and stabbed by a man later identified as Winston Moseley.
    Despite Genovese’s repeated calls for help, none of the dozen or so people in the nearby apartment building who heard her cries called police to report the incident. The attack first began at 3:20 AM, but it was not until 3:50 AM that someone first contacted police.

    There are two major factors that contribute to the bystander effect. First, the presence of other people creates a diffusion of responsibility. Because there are other observers, individuals do not feel as much pressure to take action, since the responsibility to take action is thought to be shared among all of those present.
    The second reason is the need to behave in correct and socially acceptable ways. When other observers fail to react, individuals often take this as a signal that a response is not needed or not appropriate. Other researchers have found that onlookers are less likely to intervene if the situation is ambiguous(2). In the case of Kitty Genovese, many of the 38 witnesses reported that they believed that they were witnessing a "lover's quarrel," and did not realize that the young woman was actually being murdered.

    For more information on the bystander effect and cases including how ill or injured people have been ignored and died because of the bystander effect-

    Thanks for your post Marzi.
    Jodi xo.

  3. Brilliant post Marzi, and Jodi I totally agree but maybe for us it should be called the By-lay-downer effect hahah .. or the lay-by effect hahah

  4. Yes Lee Lee I could really run with that one:)....don't get me started:)
    I was actually brushing my teeth tonight reflecting back on this post and when my mum fell ill in 1995. She was a socialite in some ways, with a large marketing business and social cirlce, very friendly and outgoing person, very caring and kind, and was a retired nurse over over 20 years.
    I remember in the years that followed the onset of her illness watching her become more and more socailly isolated and all these business and social "friends" dwindled to none, zilch, nada, and now today we have left standing one friend, guess who she calls her friend? - her ever faithful hairdresser of 30 years, as obviously she still needs her hair cut, who she considers a friend also as they had kids around the same time also...

    I remember feeling anger to these other busy socialite "friends" who had abandoned her in her illness and what I would have liked to have said to them, how I felt like they sucked the goodness out of her and moved on with their lives while she lay bedridden wasting away and still is. Yet she was good enough for them when she was well and active and "fun".

    I really started looking at people and how they treated sick people/friends a long time ago as I was hurt for my mum. Deeply hurt at a core level. My brothers were also, as we'd lost time with our mum because she was a work horse type A personality, and were now losing time with her because of this wrethced illness.

    No one has ever visited her in over 10 years (besides us), and to be honest she's too sick now she wouldn't want them to. But they could have sent cards etc, or helped out in other ways. It was the "by stander" "lame-arse" effect, really just a sign of the selfish society we live in. People caught up in the hamster wheel and if you fall off, "ta-ta, so long". Some may have tried to understand but when there was no immediate diagnosis well....

    I don't like to people bash as I like to think that essentially humans are more good than bad, but I have noticed humans are also very good are at turning a blind eye to negative things that do not directly impact on them or their family....and I don't admire this mindset.

    The only way I have been able to make peace with this, as we now have 3 disabled family members in my immediate family, (and this is not in a malicious way or mindset), is to understand and realise that no one gets out of this alive. Full stop. So at some point, most people will have to face illness, whether it's their own or a loved one's, and as Marzi said, we all hope that others are there for us when that happens, when we fall ill. It will be in those times, as Thomas Moore aptly calls the "dark night of the souls", that these people will gain a greater understanding of the suffering associated with illness and how wrong it is (was) to not be there for others when they are suffering an illness if you are or were able to help at all. The smallest thing, as we all know (eg changing someone's bed linen once a week) can make someone's day/week and let them know they are not alone and someone does care.

  5. I don't begrudge cancer patients getting support at all, they deserve it. But I can't stand to think of all the people suffering without recognition and any support at all. It is inhumane. Thanks Marzi and Lee Lee xx


Thanks for reading. Please let me know what you think...