A laboratory fully devoted to Meniere's disease

I am a newbie and am posting all over the place at the moment. I come from Melbourne Australia. You may already be aware of this but I thought I would share anyhow that a laboratory, the first of its kind in the world has been set up "fully devoted to research into Ménière’s disease with funds raised by Ménière’s Research Fund Incorporated, and located in The Brain & Mind Research Institute" (at the University of Sydney). Here is the link to Dr Daniel Brown's profile page. He is heading up this research.

http://www.medfac.usyd.edu.au/people/academics/profiles/danielbrown.php

When I contacted Dr Brown last year to find out where he would publish his results he immediately replied with the following info:

From Dr Brown

No cure yet, I'm currently working on diagnostic measurements in humans (which we still need so that we can confirm that you have MD and so we can monitor it's progress). You'll find that there are TONNES of Meniere's websites, with lots and lots of good advice, support and information. I don't yet have my own website, but I'm working on it.
Unfortunately, there is no one treatment that works for all, and no one treatment that is an actual cure... yet.

If you get involved with "Meniere's Australia" you can keep up to date with my research progress. Understand though that researchers have been investigating Meniere's disease at some level for roughly 100 years. Having said that, ours is the first research laboratory in the world set-up solely for the purpose of researching Meniere's and finding a cure.

Kind regards,
Daniel Brown, PhD

 

Interesting. Thanks for sharing!

 

Soumds great Ally! You should refer him to our reserach lab here on our forum. Thanks for sharing!

 

God Bless Dr. Brown! TFS Ally!

 

Great - finally something is being done but if research has been ongoing for 100 years why have they not come up with something!

 

Well, glory be. I will contact Dr. Brown, I notice Phd, not MD, and report back on any discussions we have. Thanks for posting this information.

 

Thanks for sharing that Doc.

 

This is the kind of post and information that is so wonderful to see on this site. We need to be encouraging each other, looking for real positive work and solutions. Much work being done out there. If not for us....then at least for the next generation....Menieres treatment will be a better thing. Sid

 

Thanks again, ally, for bringing this to our attention. I have written Dr. Brown a message concerning his impending research on the cause of Meniere's. Here is what I wrote:


Dear Dr. Brown,

Recently, on www.menieres.org, I read a post by a Meniere's sufferer indicating that you will be conducting research to determine the actual cause of Meniere's symptoms, this in order to discover a cure. I applaud that undertaking.

In 2006, I had the classic symptoms commonly referred as Meniere's Disease, those very symptoms you list here on your site. I was told by a medical doctor that I had Meniere's Disease and that there was no known cause and no known cure. Fortunately for me I did not allow that answer to dissuade me from discovering and successfully treating my disorder. Shortly thereafter, to tell others of my success and to help them with their own, I began posting on Menieres.org. That was over three years ago.

Since posting my story, and my theory, and frankly taking a lot of heat over my contentions, people from all over the world began applying what I told them to their cases, began treating theirs in the same manner, and became free from their symptoms as well. The evidence is in my original post. Here is my concern , Dr. Brown. The cause of my symptoms, and that of all these people who have so far benefitted from my experience, has no medical origin. No, the cause was mechanical impingement of the brain stem, by a misalignment of the upper cervical vertebra, local to the attachment of the 8th cranial nerve, pressing on that region and impinging the nerve and nerve pathways in such a manner that proper communication to and from the inner ear is disrupted. Being incommunicado with the brain, the walls of endolymphatic sac no doubt hardened by atrophic action, no longer allowing endolymph to pass through into the brain cavity. During each cycle, the sac would fill up, finally to break open, at which time vertigo would occur upon the release of the excess fluid. Before I discovered the cause of my symptoms, that time frame being approximately six months after they began, these experiences would haunt me every 2-4 weeks, each time ending in 12-14 hours of vertigo. And the cause was a misalignment of the first vertebra, pressing on the brain stem. Nothing else explains this.

My concern is that, frankly, this cause leaves medical science with nothing much to do. That is because only a proficient upper cervical chiropractor, one trained in a specific method that only a few world-wide are qualified, can adjust this bone back into position. And in my case, and in the cases of people all over the world who tried what cured my Meniere's symptoms, the same occurred, symptoms were arrested, some immediately, some over a relatively short interval. You may read this posting, and the success stories on www.menieres.org, in the Database area of the website. It is a long post now read over 80,000 times. For your convenience, here is a shortcut to that page:

http://www.menieres.org/forum/index.php/topic,3080.0.html

You are a medical doctor, and I am sure a fine one. That being the case, though, what would happen to your research if it turned out that the cause you were looking for was not a medical cause at all, but a chiropractic cause? That is my concern with any medical studies or trials. But if you are truly looking for a cause and cure, and you refuse to look at all possibilities, medical and non-medical, then my experience, as a former sufferer, one who is completely cured of Meniere's, not just in remission, tells me that you will look forever and never discover a cause. It would be looking for a needle in a haystack in which there was not even a needle present. So I contact you today to not only help you toward your goal, but also to challenge you to look where the needles are, not where they are not. If you are truly interested in a possible cure, then you must not turn your back on any possible cause. And if after reading the cases I cite you either cannot, or do not move to explain them, then unfortunately you will have failed in your research before it began. To succeed in your stated goal, you must explain how I and all of these other people, from all over the world, can have cured our Meniere's, heretofore incurable, by undergoing a simple upper cervical chiropractic treatment perfected by the National Upper Cervical Chiropractic Association in America (NUCCA, see www.nucca.org). If you cannot explain that, your research will have failed. So Dr. Brown, as a former sufferer, that is how I see your first research goal. Before you get on to any other possible causes for Meniere's symptoms, you must first explain these cases of these real-life people. That is my challenge to you.

Know that I stand ready to aid you in your research in any way that I can. I am certain that, just at Menieres.org, there are more people than you might imagine who would welcome the opportunity to take part in trials that would open the door for this treatment to be tested. You have my email address and I would be glad to correspond or speak with you at any time you like. Please consider these remarks, made in good faith, from one who had the condition you seek to cure, who discovered a cause you seek to find, in not only himself but others around the world, and who successfully treated that cause directly.

Sincerely,

Henry G. Sullivan

 

He is doing research in collaboration with Alec Salt, a researcher with whom I am familiar. Many of you may recognize Salt's name as well since he is cited in MM.Org's Meniere's Disease Information Center.

Both these guys seem to be paying close attention to the fluid in the inner ear.

I am certainly glad there is an Aussie fund dedicated to this, but it doesn't sound like it is very large. Usually, with research that is well funded, there will be many principal investigators for each of multiple projects, even if they are studying only one disease. Still, this is better than nothing and encouraging. Too bad we don't have something equivalent to this in the USA--I mean one entity fully devoted to MM. Instead, we have lots of piecemeal efforts by investigators all over the place without any centralized coordinated effort to collaborate and analyze all the data being collected. Oh well, ain't a perfect world.

Thanks for posting this. Will be interesting to see what comes of it.

 

And in the manner of Henry Sullivan, here's what I wrote good Dr. Brown in Australia:

Dr. Brown,

I note with interest your participation in a Meniere’s research program or institute. I will make this very brief, willing to follow up with very detailed supportive materials should you request them.

In short, I have devised a Meniere’s treatment regimen that has brought significant or complete symptomatic relief to at least 87% of Meniere’s patients who have properly complied with my regimen. I have personal postings and emails from over 200 regimen users to support this claim. Should you wish, I can provide a giant document listing all of these.

My regimen now has a good number of users in the USA and around the world, bringing symptomatic relief where conventional therapies failed.

You are welcome to scrutinize the regimen, or utterly dismiss or disregard it. Either way, dozens of Meniere’s victims will continue to discover the regimen and undertake it and gain relief. You should at least be aware that this alternative approach to the disease has increasing numbers of adherents, including a number of American physicians who have learned of it from their patients, who for the first time have gained continuing symptomatic relief.

I have described the regimen at the posting below. You are welcome to peruse it. Be advised that I am a biologist (but not a physician) and can substantiate all that I claim in the posting.

Read and considerate it closely here:
http://www.menieresresources.org/Resources/HomePage?action=download&upname=ANewApproachToMenieresDisease-TheJohnOfOhioRegimenJan2010.pdf

For the multitudes of Meniere’s sufferers who would so gratefully benefit from any professional endorsement of the regimen, I thank you for your consideration of what I have found to be so very helpful with this horrible disease.

–John of Ohio

 

I am very impressed that the dr is working FIRST on a diagnostic procedure. If we don't know what IS menieres, how can we conduct trials to see if something cures menieres?

 

$22K for a research fellowship, a shame not more is spent on this!

 

by the way Ally, have u ever seen Mr Franze - he is my Melb based ENT.

 

Sadly, I suspect more is not being done in Meniere's research since there doesn't appear to be big $$$ for the pharmaceuticals.

Who ever heard of Aids before Rock Hudson? We need a famous person to bring this dreadful disease to the news media's attention.

Jacquie

 

THIS is where government money could appropriately spent, not in drug therapy trials. Government money should be to discover CAUSES of the symptoms, not eliminate risk for private drug comanies.

Good letter, John. I hate to sound like I jhave a chip on my shoulder with the medical folks. But every doctor I have shared this information with has merely said, "Whatever Works for you...". The he or she walks away. So do I have a chip on my shoulder? Maybe so. But I consciously try to offset any chip I have with sheer truth.

We'll see what happens. Again, great job.

 

Hank,

I, too, have to carefully consider my words and thoughts when communicating with medical people. I have a good number of friends and acquaintances who are physicians. They are all fine, well-educated, intelligent, usually very helpful people. The problem is not them personally, but the strange and archaic social system of medicine. It goes back two centuries or more, with certain now-ridiculous and unwarranted presumptions.

First, medical people themselves, and society in general (including many who visit this site) presume, even know, that physicians simply know it all and have all medical information in their brains, which is entirely up to date and contemporary, and most importantly, common folk simply can’t understand medical diseases and treatments. We’ve just got to leave all of this to the medical priesthood. We should all understand that snake oil is actually poisonous, and we’ve just got to trust our physicians to know, use, and practice what should be known, used, and practiced. It is inappropriate, even useless for those without medical degrees to play any part in medical diagnosis or treatment.

Any such involvement challenges the legally and culturally established medical priesthood. It cannot be countenanced by those who “are in the know.” We are merely ignorant and misguided pawns in all of this. If only we’d get out of the way and let conventional medicine treat us like it knows we should be, all would be well—for conventional medicine. The typical terminal office visit phrase so many with Meniere’s hear from their doctors, “We’ve done all we can for you, so learn to live with it.” would then finish the process. For the doctors, all would be well.

Ask any registered nurse about this phenomenon. Nurses often can see and discern subtle symptoms, indications, and signs that hard-pressed physicians haven’t the time or abilities to discern. But except in the best facilities, nurses are required to—like us—bite their tongues and wait for the good doctor to ask the nurse if she has any comment or suggestions.

And if she does, just what does that do for the vaunted position of the doctor? What if the nurse sees something pretty obvious that the doctor should attend to? And he’s (generally) a he, and the nurse (generally) a lesser she. How could you run a well-controlled and orderly practice when both nurses and patients would be encouraged to share ideas and observations? Authoritarian medicine can’t work like that. It threatens everything physicians are about.

The far greater majority of doctors are oldest children. A good number are only children. Virtually all of them were exemplary students in grade and high school. They were often held in inordinate regard by teachers and parents. From the very beginning, they were assured that they were special, with greater knowledge and capabilities than mere mortals. (“Brats,” some would say.) Then, they went through a decade or more of medical school, trained by the most brilliant professors on the planet. Who, then, could challenge their overarching knowledge and capability. Those who question any of this are in such error.

To get a professional perspective on this, read this abstract, from a medical article entitled:
“Arrogance among physicians.” http://www.ncbi.nlm.nih.gov/pubmed/11841975 I’m not making stuff up.

Fortunately, Dr. Brown, to whom we sent our messages, and who will oversee the Australian Meniere’s research project, is only a PhD, not a real medical doctor. Perhaps he will consider what we have sent him with a more open mind, searching for real answers, not confirmations of convention or tradition.

On another matter related to this project, I’m personally not so excited about trying to work up some universally accepted definition of Meniere’s, some academic list of Meniere’s criteria. It’s pretty obvious to us laymen who have the disease and have worked out personal (and now shared) treatments that the disease is simply diverse in symptoms and severity. If all of the bright medical minds who have been working with this disease for the last 50 years can’t yet agree on a definitive symptomology, it ain’t gonna happen with a few tens of thousands of dollars that will allow some medical academics to come up with what probably will be a “meta-analysis,” a mere compilation of Meniere’s symptoms from dozens of published medical articles. It’s likely to end up saying something like this.

“After statistically analyzing 437 peer-reviewed articles dealing with Meniere’s Disease in the last 40 years, it is now clear that this disease can now be definitively diagnosed and defined uniquely by the following symptoms:...”

That won’t help anyone but the doctors when they have to say, “We can’t know what you have. Learn to live with it.”

What all of us here want and need are real treatments, not diagnoses. The symptoms are exceedingly clear. It’s the stuff we tell the doctor about when we go in to him or her. “Doc, I’ve got big fullness in my left ear.” “Doc, I can’t hear out of my left ear, and start to spin very often, causing me to vomit.” And so forth....

You and I and the others here with alternative treatments have no concerns about what we are attacking is called; “Meniere’s disease,” “Meniere’s syndrome,” or any of the other named conditions that appear here. We just want to reduce or eliminate the symptoms that bedevil us. That’s what I would hope Dr. Brown (PhD) would focus on. We wish him the very best.

–John of Ohio

 

Hank and John--please make sure you post whatever response you get from Dr. Brown.

 

Without a doubt, Jim. That's what its all about.

 

Hoping for the best, it will be interesting to see how he responds, the good doc obviously has an interest in Menieres and I for one feel that is a great place to start. John, I agree with everything that you have so eloquently stated, I am an RN and I have seen more than my share in the House of God.