Thursday, 13 September 2012

HISTORY MADE! The FULL HANSARD TRANSCRIPTS from the Australian Parliament debate on Meniere’s Disease

If you haven’t already SEEN THE VIDEO, you can check it out here HISTORY MADE! Meniere's Disease & Meniere's Australia recognised by Australian Parliament along with some of my highlights from the speeches.

According to Ms Jill Hall MP, she  does "not expect that there will be further debate". The motions will probably be voted on in the next House of Reps sitting week starting Tuesday 9th October 2012

If you live in Australia, SEARCH for the Senator &/or Member in your electorate, email them ASAP and let them know you support the motion on Meniere’s Disease put forward by the Hon Mr Bruce Billson. Together we can BE HEARD!

Federation Chamber
Meniere's Disease
Monday, 10 September 2012

Meniere's Disease

Debate resumed on the motion by Mr Billson:
That this House notes:
(1) the work of Meniere's Australia in developing and improving services in Australia for people living with the distressing consequences of Meniere's disease and other unseen Vestibular Disorders;
(2) that vertigo, dizziness, balance problems, hearing loss and tinnitus are common symptoms of Meniere's disease which lead to sudden debilitating attacks, loss of employment, social isolation and loss of confidence and personal capabilities in everyday living activities;
(3) that the exact number of people affected by Vestibular Disorders is not known as the conditions are under-diagnosed and under-reported;
(4) that the research from the United States of America indicates that up to five per cent of the population may be living with one or more vestibular conditions which translates to one million Australians; and
(5) that with more support, Meniere's Australia Support Groups would be able to provide much needed counselling, practical advice, information and peer support to both individuals and their families and carers.

MrBILLSON (Dunkley) (19:58): Meniere's disease is a condition that really is an enormous imposition on many Australians, and I am pleased that the House has afforded some time this evening to talk about the condition and what we can do about it and the support that is available. The motion that stands in my name recognises the work of Meniere's Australia, a fantastic group of people. Their efforts in developing and improving services to Australians living with the condition—which can, as I mentioned earlier, be extraordinarily distressing—are to be commended. Their work with Meniere's disease and other vestibular disorders is to be recognised tonight in this debate.

The motion also recognises that vertigo, dizziness, balance problems, hearing loss, and tinnitus are common symptoms of Meniere's disease, which leads to sudden debilitating attacks that can cause loss of employment, social isolation and loss of confidence, particularly for people concerned that the condition limits their mobility and capacity to get out of the home and also impacts on their personal capabilities of leading an active and independent everyday life.

The motion also recognises the exact number of people that live with vestibular disorders. Meniere's disease is not well known and the conditions are underdiagnosed and underreported. It touches on some research from the United States that indicates up to five per cent of the population may be living with one or more vestibular conditions, which in our case would translate to around one million Australians.

The motion also points out the simple, and I hope obvious, fact to the parliament that Meniere's Australia support groups could do a whole lot more with a bit of additional support in the counselling they provide, the practical advice they offer to families and those suffering with vestibular conditions, and the information and peer support network could extend further. For those that are listening, particularly philanthropic organisations or even those operating in the hearing loss area, some support for Meniere's Australia would be a terrific measure.

Meniere's disease is a condition in which there is excess fluid in the inner ear. The excess fluid disturbs the ear's balance and hearing mechanisms and produces a range of symptoms, some of which I touched on earlier. It is quite a frightening condition in that the attacks usually centre around vertigo. I had the misfortune of an inner ear infection a few months ago and Meniere's Australia representatives reminded me that I had a first-hand sense of what many of their members were experiencing quite regularly. It is very disturbing when one's mobility is completely compromised and you are not even sure whether you can lie still in bed with any great grace. You can imagine the enormous impact this must have on the quality of life of people who suffer from this condition and these quite debilitating symptoms regularly.

The attacks of vertigo usually occur in clusters with varying periods of remission. It might be matter of days or some years between attacks. The attacks can occur without warning and you cannot predict how severe the vertigo will be or how long it will last. Tinnitus, distorted hearing, pressure in the ear and a feeling of fullness in the ear due to the fluid build-up often occur in conjunction with vertigo. In the early stages of the condition, hearing returns to normal levels following an attack but the disease progresses measurably and permanent hearing loss occurs. Estimates vary but around 90 per cent of people with Meniere's have the disease in only one ear when first diagnosed. However, around 50 per cent of these may go on to develop the disease in both ears.

According to the ABS population health survey in 2005, Meniere's disease affects one in every 600 Australians. It appears that Meniere's is diagnosed, if it is diagnosed at all, around the late 30s to early 50s. It is uncommon for children to be diagnosed with the condition. Unfortunately this period, this window in people's lives, when diagnosis is most likely occurs coincides with some of the busiest times in their lives in careers and families.

There is no known medical cure for Meniere's. The condition can be managed to some degree through medication, diet, stress reduction, exercise programs, natural therapies and, as a last resort, perhaps surgery. This is where Meniere's Australia's work becomes so important in providing information to sufferers and their families about how to manage the condition, how to sustain the best quality of life and how to engage in their community and with their work and families, mindful that there is no medical cure for the condition. There are treatment options for acute attacks of vertigo as well as options for managing the symptoms that are experienced and possibly some steps that might reduce the severity and frequency of further attacks.

Although it is not life-threatening, the disease can be life destroying. There is a great deal of fear and uncertainty which may accompany the symptoms and a sufferer may appear perfectly well and then be unable to stand up straight or unable to hear properly or be coping with severe and uncontrollable ringing or roaring noises in their ears. This can result in enormous problems for their employment, resulting in financial hardships and difficulty with family and friends. So, whilst the condition may be able to be alleviated and managed, it is, sadly, normally a progressive condition that is irreversible. As I said, the causes as well as treatments remain unknown. The anxiety it provokes can be extraordinarily debilitating and create of itself a sense of stress, suffering and helplessness. This is why organisations like Meniere's Australia are so crucial to steer sufferers and their families through what can be an extraordinarily horrendous time for them and a time of enormous adjustment.

Meniere's disease falls between the cracks in the current health care system. Sensory hearing loss is identified as one of the worst consequences of Meniere's disease, and I was happy to be talking with the Australian Hearing Service, which has a terrific outlet located in my electorate in Frankston, about the overlap between the treatments and services they provide and conditions such as Meniere's which may not immediately appear to be a hearing condition, but that is where some of the most profound symptoms arise. However, there is the chronic illness component with the vertigo attacks and the vestibular impairment that is not addressed well by these current health system arrangements.

When we looked at a 2007 report known as Listen here!: The economic impact and cost of hearing loss in Australia, the economic consequences through lost productivity and direct cost was enormous: about $6.7 billion a year lost to the Australian economy because of hearing loss conditions, and Meniere's is very much a part of that. It is well documented that the real cost might be as high as $11.75 billion, which in 2007 was 1.4 per cent of GDP, according to research by Access Economics. This is an enormously significant impact on an individual's life and their families but the consequences for the nation, in my view, warrant it getting greater attention in our health strategies.

We need to know how many people actually have this condition—that is the first impediment in tackling it: in not knowing what the incidence and prevalence of different conditions around Meniere's and the hearing loss that results actually is. I mention that 2005 survey that shows that there is one in 600 or 606, as the case may be, is what the ABS puts it at. But there are potential data collection points right throughout the health system, when patients present with symptoms of hearing loss, vertigo and tinnitus at ear, nose and throat and neurologist clinics and hospitals across Australia. Some effort to capture that would help to inform policymakers about what is the best thing that we can do.

While all this is going on and there is a lack of coordinated effort in terms of the health system generally, the Meniere's Support Group and Meniere's Australia are simply getting on with the work. In their own survey of their members in 2006, they captured the spread of diagnostic age between 30 and 50, and 54 per cent of those that were members were diagnosed while they were still actively in the workforce—so you can see that economic consequence. Twenty-one per cent of the members reported that they had to take paid leave because of their Meniere's condition and 16 per cent said they had reduced working hours.

Tonight's motion is to add strength to the arm of Meniere's Australia. I am a little bit parochial. Its information resource centre happens to be located in Dunkley at very modest offices as they look use new technology to share their learnings about how to cope with the condition and maintain a quality of life. Natasha Harrington-Benton is the director of Meniere's UK and she was in our country recently to do presentations in both Melbourne and Sydney with Professor Steve O'Leary and Professor Bill Gibson, hoping to internationalise the work and the insights, and to make sure that there is more peer support and resources available. Neither the group here in Australia, nor in the UK, get government funding. It is a bit of a shout out to the philanthropic community to get behind Meniere's Australia. I also want to tip my hat to John Cook and the very dedicated team at the resource centre; and also to Lynn Polson OAM. Her work for Meniere's Australia—and John's—is to be commended. (Time expired)

MsHALL (Shortland—Government Whip) (20:08): It is with great pleasure that I rise to speak on this motion and I congratulate the member for bringing it before the House. Meniere's disease is one of those diseases that people know very little about and it can actually take a person's life away from them. I want to dedicate the first part of my speech to what Meniere's disease is. There are the classic symptoms of vertigo, dizziness, alliance problems, hearing loss, tinnitus—they are all very common features of Meniere's disease leading to the sudden debilitating attacks where people really cannot function. It also leads to loss of employment, social isolation, loss of confidence and personal capabilities in everyday life. I have three acquaintances who have suffered from Meniere's disease.

They have had all the symptoms: the vertigo, the nausea and the vomiting. People do not realise how bad that can be. People cannot lift their head off their pillow because their Meniere's disease is so bad. Symptoms include the vertigo, the dizziness, the fluctuating hearing loss, the tinnitus, the feeling of pressure or fullness in the ear, and the excess fluid disturbing balance and the hearing mechanism. It produces all those symptoms. When you are suffering from those symptoms and you could have a severe attack at any moment, it is really debilitating.

It often takes a while to diagnose that a person is actually suffering from Meniere's disease. One person I saw having a very severe attack looked like they were having a seizure. They had exactly the same sorts of symptoms. The person had lost control of their body and they were unable to function, but it was Meniere's disease. In the earlier stages it is really hard to predict how often a person will have an attack. It is hard to diagnose and the periods of remission change from time to time—they will lessen, they will disappear and then they will return. I have been told that vertigo creates a sensation of spinning. The whole room you are in starts spinning around you, and it can last from 10 minutes to several hours.

The woman that I saw having a Meniere's attack rarely leaves her house now. Her life has totally been taken from her. She does not drive and she is reliant on her partner for the basic support within her house. Regarding the room spinning, if she has an attack she manages to get to a wall of the room and then walks along the wall to gain some sort of stability. It is a horrible feeling. There is nausea, seasickness, dizziness and the feeling that you are going to fall, so she has the security of the wall. It is terrible. It can even lead to loss of bowel control and your basic functions. The fact that you cannot predict when you are going to have an attack is a really debilitating side-effect of being a sufferer of Meniere's. There is the unsteadiness when you are moving rapidly—and that can happen even when you are not having an attack—the tinnitus and the distortion of hearing.

The brother-in-law of one of my staff members suffers from Meniere's disease. He described it to my staff member as though somebody is kneading his brain. That is the feeling. He was in a very responsible job and he had to give up work, so he is now unemployed. I do not think that we can emphasise enough the debilitating effect of it. Meniere's disease is one of the silent diseases that not many people are aware of, including the debilitating nature of it.

In my research I found that Meniere's disease has three stages. Stage 1 is when the vertigo is in a form where you get dizzy. By the time you present for your diagnostic test, your ears have returned to normal.

That leads to it being very difficult to diagnose a person like the one I was talking about, the woman who is so debilitated by it. It took a very long time before they could diagnose the problem. Half the people that are affected with it at this stage go into remission. Stage 2 is where it is easier to diagnose Meniere's disease. The attacks of vertigo continue, the tinnitus increases, the feeling of pressure or fullness in the ear may worsen and hearing fluctuates but never quite returns to normal levels, so it is always there.

The important fact is that it is a chronic, lifelong disease, it is a very debilitating disease, and there is absolutely no cure for it. It is commonly found in adults that are in their 30s or older. The member for Dunkley mentioned 30 to 50, and that would probably be the age group that it is mostly found in. I am sure he has researched it well. It really causes underlying psychological problems. People lose their confidence, their self-esteem and their independence.

The other part of the motion that I would like to turn to now relates to Meniere's Australia and the work that they do. Support groups in our society—such as Meniere's Australia, the post-polio support group that I am closely involved in, asthma support groups and the Heart Foundation support groups—really do a marvellous job. Meniere's Australia is a not-for-profit non-government organisation which promotes the development of Australia-wide services and supports people that are living with Meniere's disease. Meniere's Australia was founded by the Meniere's support groups of New South Wales and Victoria. I know the member for Dunkley has already shared with us the fact that the office is in his electorate. It is affiliated with the Meniere's Research Fund, which is administered through the University of Sydney medical foundation. The mission of the Meniere's Research Fund is to raise funding to support research into Meniere's disease and to finance the expansion of the Meniere's disease research laboratory. The fund currently holds $1.5 million, sourced from donations, community fundraising and funding grants. It has a target of raising $2.5 million, but $2.5 million would just be scratching the surface.

I have been advised that the government recognises, and the minister has told me that she recognises, the importance of Meniere's Australia. She knows that their work helps people along and gives them the support they need when they are suffering from Meniere's disease. All these support groups—and Meniere's Australia is no different—need to have the work that they do acknowledged. I know that sufferers of Meniere's disease rely on Meniere's Australia. I congratulate them on the fine work that they do, and I think that research into this disease is well and truly needed. (Time expired)

MrCRAIG KELLY (Hughes) (20:18): I am pleased to second the motion moved by my good friend the very handsome member for Dunkley. I welcome the opportunity to discuss an issue that is important to many families across our nation and to participate in this debate in expanding both our parliament's knowledge and the knowledge of those listening in at home on a disease that affects approximately one in 600 Australians. Meniere's disease is a disorder of the inner ear, associated with a change in the volume of fluid inside a portion of the inner ear called the labyrinth. It causes episodes of vertigo and tinnitus, which is a constant buzzing or humming noise in one's ear; a feeling of fullness or pressure in the ear; and fluctuating, progressive low-frequency hearing loss.

Meniere's disease was named after a French physician, Prosper Meniere, who first identified the cause of this disorder back in 1861. It is a disease that can develop at any age but it is more likely to happen in adults aged between 40 and 60 years of age. Also there is no definitive test for Meniere's; it is only diagnosed when all other causes have been ruled out.

A diagnosis of Meniere's is not promising. Although Meniere's will not directly kill you, it is likely to make your life miserable in a way that few other diseases can. A Meniere's episode generally involves severe vertigo, imbalance, nausea and vomiting with the average attack lasting for two to four hours. After a severe attack, most people find that they are extremely exhausted and then need to sleep for several hours.

The condition affects people differently: it can range in intensity from being a mild annoyance to a chronic, lifelong disability. It is important to appreciate how devastating the impact of the symptoms can be, and the natural deteriorating progression this can have on individuals suffering from the disease. Those who have experienced it describe it as frustrating, disabling, and disheartening—something they say, you could wish only upon your worst enemies.

Currently, there is no known medical cure for Meniere's; however, the condition can be managed to some degree through medication, diet, stress reduction, exercise programs, natural therapies and, as a last resort, surgery. It is a progressive disease which worsens, more slowly in some and more quickly in others. Some patients experience periods of remission for no apparent reason. Some remissions may continue for many years; even decades. Other remissions are sadly short-lived. Although the attacks of vertigo may decline with time, the hearing loss and tinnitus generally persist.

Many people suffering from Meniere's disease lead productive, near normal lives; while others face greater challenges in coping. I can think of only a few situations more stressful and draining on one's mental condition than the combination of a droning, ringing noise inside your ear and not knowing when you may lose control of your body, suffering an attack of vertigo, nausea and vomiting. It is no surprise that those suffering from this disease in many severe cases may end up losing their jobs and will spend their lives on disability. However, thankfully the statistics show that the majority, perhaps between 60 and 80 per cent of sufferers, will not need permanent disability and will recover with or without medical treatment.

Many theories exist about what happens to cause Meniere's disease but no definite answers are available. Some researchers think that Meniere's disease is the result of constrictions in blood vessels, similar to those that cause migraine headaches, and others think is brought on by allergies. This demonstrates the importance of medical research and that is why this motion is important to recognise the great work being done by the broader community to provide awareness, much needed counselling, practical advice and information to peer groups, individuals, families and their carers.

Ultimately, it is medical research that has the potential to ease the pain, suffering and hardship of those suffering from Meniere's disease.    That is why in this place we need to declare a war on waste and inefficiency. We need to declare war on those who seek to divert our scarce and precious resources into inefficient methods of production, for we have seen that this waste and inefficiency has an opportunity cost, and one of those opportunity costs is reduction in the spending on medical research to reduce the pain, suffering and hardship of those affected by diseases such as Meniere's. (Time expired)

MrNEUMANN (Blair) (20:23): For some people their favourite Alfred Hitchcock movie is Rear Window but mine is Vertigo and that is because I am a James Stewart fan for a start and I thought that Kim Novak was pretty hot. One of the things we would say today about the character played by James Stewart—Scotty, if I remember rightly—who is a former police detective who becomes a private eye and suffers from vertigo is that he had Meniere's disease.

We know a lot more about it these days than they did in 1954, when the novel was written, and when the movie was produced and filmed, in 1958. Medical science has developed a lot since that time, and there has been much development in this area.

Sadly, the character in the movie is affected in such a graphic way and shows all the symptoms on Meniere's disease—the vertigo, the dizziness, the nausea. All those symptoms are displayed clearly in the Jimmy Stewart character. I think the novelist was describing someone who had Meniere's disease, and Alfred Hitchcock did a terrific job in that.

The government has provided advice through the competitive funding rounds, the research base and the hearing loss prevention program and the National Health and Medical Research Council medical research grants. But there is a lot more to be done. We have provided assistance and advice to the Office of Hearing Services with information about what steps can be undertaken and what funding sources are available from state and territory governments as well as some private sources.

This is a chronic incurable condition of the inner ear and it produces a range of debilitating side effects, ergo Scottie in Vertigo. It can affect hearing and balance to a varying degree and there are different stages, as the member for Shortland said. It is characterised by a period of vertigo. All of us who have played sport and had a hard knock or felt unwell would have experienced vertigo. Imagine how debilitating it would be to have that on a daily basis. Then there is the low-pitched tinnitus. My wife has had tinnitus for quite some time and I know how it has impacted on her. But there is hearing loss as well. This is a terrible condition which affects people. All the symptoms that previous speakers have talked about really show the impact it has on people's lives—from mild annoyance to chronic lifelong disability.

I am sure there are many people with Meniere's disease amongst the 800,000 people on disability pensions in this country. Sadly, it is not diagnosed as freely and effectively as it should be. Meniere's Australia is a not-for-profit organisation and, like so many in our electorates across the states and territories, they do great work in advising and informing people of the condition and assisting the understanding and appreciation of what these people suffer from. Many years ago there would have been tremendous misunderstanding about this condition. People would have been accused of faking it. People would have said, 'What's wrong with you?' This is a real condition that affects a lot of people.

Meniere's Australia provide for health professionals and individuals who experience these problems. They seek funding opportunities and they provide information and resources to doctors and allied health professionals who deal with the people who suffer from this condition. One of the most constructive things a person can do if diagnosed with this condition is to learn as much about it as possible. These supports groups are extremely valuable. I would urge anyone in my electorate who suffers from these conditions to seek medical advice. This disease affects about 190 per 100,000. Gender studies indicate that women are more likely than men to suffer from this condition. There is no definitive test for Meniere's disease. It can only be diagnosed when all other things are excluded. I was recently talking to Dr David Careless, a physician in my electorate, in relation to another disease and he told me there are many diseases like this where you only work out what the condition is after doing all the tests. He said it has been his sad duty on many occasions to tell a patient that they have chronic fatigue, fibromyalgia or some other condition. It is only after doing all the tests that they understand. Information is critical.

There are things that can be done—environmental changes, dietary changes and exercise—but nothing solves the problem. There is a lot more we can do to ease the stress and anxiety. I commend the member for Dunkley for this motion and I commend Meniere's Australia for the work they do in helping people across the country.

MrMcCORMACK (Riverina) (20:29): One in six Australians has a hearing loss. With the ageing of our population, hearing loss is projected to increase and affect one in four by 2050. Hearing loss can result if there is a problem at any point in the hearing pathway—in the outer, middle or inner ear, or in the complex auditory nerve pathway to the brain. Many people who experience hearing loss can feel isolated and frustrated.

However, there can be a lot of different avenues that it can take for someone with regular hearing loss, such as congenital hearing loss that has been present since birth, or acquired hearing loss that occurred later on. Yet there is a disease known as Meniere’s disease, which can see sufferers slip through the cracks of the healthcare system and not receive the treatment they so desperately need or deserve.

Meniere’s disease is a debilitating progressive condition of the inner ear—or, put simply, it is a condition in which there is an excess of fluid in the inner ear. Meniere’s disease can produce symptoms such as vertigo, a form of dizziness where your surroundings appear to spin, or tinnitus, an abnormal ringing noise inside the ear, or fluctuating hearing loss or a feeling of pressure or fullness in the ear due to a fluid build-up.

A great deal of fear and uncertainty can accompany these symptoms. A sufferer may appear well but may be unable to stand up straight, unable to hear properly or be coping with severe and uncontrollable ringing, humming or roaring noises. These types of issues are associated with the disease and can make people feel isolated, frustrated, embarrassed and even difficult to cope with.

There are different estimates of the number of Australians with Meniere’s disease. According to research from the United States of America up to five per cent of the population in that country may be living with one or more vestibular conditions such as Meniere’s disease. Hearing Australia's best estimate is that there are 40,000 people with Meniere’s disease, with new cases of about 4,000 people annually. According to Meniere’s Australia, a not-for-profit organisation, hearing loss with Meniere’s disease can fluctuate according to the stage of the disease.

Dietary and lifestyle changes are important in managing the personal impact of Meniere’s disease. There is increasing evidence that further loss of hearing can be prevented by receiving the right information. So there needs to be a greater understanding by health professionals so that they can quickly diagnose a problem, and they need to work with individuals in the mental health sector as issues within the inner ear can cause stress, anxiety and depression. One of the biggest issues with Meniere’s disease is that it can go undiagnosed. So, anybody with the sort of symptoms that I and other speakers have mentioned should seek the necessary medical help and service.

Many sufferers of Meniere’s disease and other vestibular disorders can experience social isolation and loss of confidence, which can result in problems with their employment and their relationships and it can possibly catapult them into financial hardships and difficulties with their families and personal lives.
According to Listen Hear! The economic impact and cost of hearing loss in Australia, identified productivity loss related directly to hearing impairment accounts for more than half of the total financial costs, or some $6.7 billion a year. It is well documented that hearing loss represents a real financial cost to Australia of $11.75 billion per annum, or 1.4 per cent of gross domestic product, according to the research study by Access Economics.

Meniere’s Australia was unable to identify any particular support groups within the Riverina electorate. However, a spokeswoman for MA did say that one of the biggest issues they had with getting support for Meniere’s disease sufferers was having someone well enough to hold the forums or support groups.

Many sufferers of Meniere’s disease find out about their condition after it is too late to turn back. Once their vertigo or tinnitus has reached the extreme, many feel they are no longer capable of functioning. It is one of the reasons Meniere’s Australia was established. In 2007 it was registered with the objective of working to improve the diagnosis, treatment and management of this debilitating disease.

There is unfortunately no treatment for Meniere’s disease, but many things can be done to assist sufferers in the early stages. One of Meniere’s Australia's biggest challenges is making the community more aware of the issue, because with more support Meniere’s Australia's support groups would be able to provide much-needed counselling, practical advice, information and peer support to individuals, their families and their carers.

I commend the member for Dunkley for bringing this important private member's business matter for discussion in the parliament. This debate helps to raise awareness about Meniere’s disease and the umbrella group that is doing important work to combat the disease. It shows the member for Dunkley's care and concern for this little known condition. I commend the motion to the House.

 MrSTEPHEN JONES (Throsby) (20:34): Although the disease which we discuss today was first discovered by the French physician Prosper Meniere in 1861, I dare say it has been discussed and the name has been used in this chamber more in the last 30 minutes than it has been in the last 30 years. I follow the honourable member in thanking the member for Dunkley for bringing this important issue before the chamber so that we can discuss it and hopefully add to the sum of understanding about a condition which is probably more prevalent on the Australian community than many might think.

Around about 40,000 Australians are thought to suffer from some degree of Meniere's disease. Most people will not have heard of it until they have a family member or friend who is affected. No doubt there are people working in this building who are affected by it, even people who are listening to this debate today or reading it afterwards in the Hansard. I know of constituents who suffer from Meniere's disease because I have had contact from them directly. Indeed, I have a staff member who suffers from the disease and I have watched how it has from time to time debilitated her and severely impacted on her enjoyment of life and her capacity to work over the time that I have known her.

It seems that those who have this syndrome are affected in vastly different ways. As has been mentioned already, Meniere's is a syndrome in which excess fluid disturbs the balance of the inner ear and hearing mechanisms and produces a range of symptoms. Some of these symptoms include vertigo, tinnitus, fluctuating hearing loss and a feeling of pressure or fullness, like the ear is full of water. Sometimes it is like the feeling you get after having a swim in a swimming pool. Experiencing these symptoms can be debilitating, demoralising and very distressing.

For those with Meniere's, the random onset of these symptoms is extremely frustrating. One minute you are fine and functioning normally then the next minute you are suffering from vertigo, where you lose all sense of balance and are kept virtually immobile. To move even slightly causes the room around you to spin, causing a disturbing sense of disorientation. Vertigo attacks like this can last for hours and sometimes days and can even be accompanied by vomiting as your body responds to the lack of balance. For those witnessing attacks of vertigo, it can be hard to understand what is actually happening to the person in front of them. The symptoms are hard to understand and explain, even for those who are suffering them. The words, 'I'm sorry—I feel dizzy now and have to lie down,' can interrupt business meetings, running daily errands or social outings.

Because the symptoms are so broad and non-specific, Meniere's is often misdiagnosed. The relatively low profile of Meniere's means that it can be hard to get the correct diagnosis and treatment. It has three stages: stage 1 is the lowest impact and stage 3 the worst. Some sufferers do not progress beyond stage 1, where the symptoms pass more quickly and where people can stay in remission for months and sometimes even years. They are the lucky ones. For people in stage 1, managing the triggers for Meniere's is all important. Dietary changes can lessen the long-term effects of Meniere's disease. For example, because Meniere's is caused by an excess of fluid in the inner ear, for many reducing salt intake can lessen the symptoms of the disease. That is hard, because salt is prevalent in just about everything we eat.

For those in stage 3, Meniere's is almost completely debilitating. In stage 3, Meniere's will force drastic changes to how life is lived every day. Some people are no longer able to go out of the home unaccompanied. They may have to give up driving and their independence. For some people whose Meniere's is triggered by bright lights, they cannot enter a shopping centre or supermarket. I have a constituent in my electorate who has stage 3 Meniere's and managing the disease completely dominates her life. Her frequent incapacity affects relationships with family and friends and caused her to abandon her employment. She has been jeered at as she staggered along the road, trying to get to a safe resting place, by passers-by who mistakenly thought that she was drunk. It is an unfortunate consequence of the public awareness of this health issue being very low. Meniere's is a difficult and challenging syndrome, and once again I thank the member for Dunkley for raising the matter in the House today. (Time expired)

Debate adjourned.

Link to the Hansard transcripts



    House of Reps motion on Meniere's disease & Meniere's Australia due to be voted on now. Watch it live...{346ACE26-7C89-4E56-B866-8DAD5437D4AD}&accept=true

  2. UPDATE Depending on amendments to this bill it might not be for an hour or so. Stay tuned!

  3. BREAKING NEWS! “The I’s have it” The motion on Meniere’s Disease put forth by Mr Billson has been agreed to by the Parliament of Australia.

  4. But did they move to actually DO anything useful? Recognition might be a tiny step forward but it won't help one person who suffers as we sometimes do
    Cheers Val

    1. Hi Val,

      Thanks for taking the time to comment.

      You're absolutely right. It is a small step forward, but it's a step. At the very least it gave me the opportunity to post the Hansard transcript so that the words of Australia's decision makers can be viewed for the world to see.

      The more we spread the word about vestibular disorders, the more people will learn about these conditions.

      Hopefully now that Meniere's Australia has some allies in parliament it will be better placed to gain funding to support people with vestibular disorders like Meniere's disease.

      With regard to helping individual sufferers, there are people like myself who write about their experiences with Meniere's disease. Collectively we add gravity to the awareness of this condition. As Mahatma Gandhi said, "Be the change you want to see in the world".

      Every step is useful.

      Wishing you good health,