CCSVI - Aussie Action!

[hwebb]

Recent correspondence with MSRC:

11 Dec 2009

Dear MSRC,

in your recent newsletter you mention that Australian Researchers are collaborating with Zamboni to further study the relationship between CCSVI and MS.

Could you please indicate the Australian research team is involved in this effort, as I'd like to participate in this research.

best regards, hwebb


14 Dec 2009

Dear hwebb


Thank you for your email regarding CCSVI. Please note that at this stage there is no clinical trial in Australia however the researchers in Western Australian are only undertaking a limited project collecting data from their current patients.


We will keep monitoring the situation and publish anything further via our website.


Also if and when they are able to include further patients for a clinical trial we would be happy to contact you directly.


I can also recommend that you visit the following link which provides an update on CCSVI and MS http://www.msif.org/en/news/msif_news/u ... ronic.html


Kind regards

Petricia Augustus

Administration and Communications Manager

MS Research Australia

PO Box 1246 Chatswood NSW 2057

293 Mowbray Road Chatswood NSW 2067

D: 02 9468 8339 F: 02 9411 7456

Email: paugustus@msra.org.au Web: www.msra.org.au

[friday_fc]

Thanks for posting you inquiry and their response hwebb.

I followed that link and then read the Q&A's from the UK MS society at the bottom of the page and have to say their responses and shut-down attitude PISSED ME ORRRFFFF.

They're quick to dismiss anything as 'not proven' or 'more research needed' - but continue to sleep with their pharmceutical buddies with NO decent results on the horizon for us while padding up their own administration's pockets. They should be tripping over themselves to get this research underway, but nooooooooo.

Much kudos and respect to MS Canada for being proactive and working FOR us and not for themselves, like MS australia does whilst calling their lawyers and powers-that-be to hold their hands and issue their stupid default statements.

[Salvatore24]

I'm really hoping this will take off in Australia quite soon. I've already emailed Dr. Simka, but I've read that he is almost booked until the end of 2010. I am only 22, but I can feel myself going downhill quite rapidly, almost by the day.

[warrenkole]

HI all,

I just got some more info regarding the beginnings of CCSVI research in WA.

/start

Thanks for your enquiry.

This is very new and not conclusive – so there will be additional research done in Australia to test the theories and findings.

Below is a copy of the statement from MSA / MSRA – as with all new findings in MS we need to be hopeful but cautious! The testing needs to be done by trained and certified Doppler technicians using high tech probes – to match the procedure used in Italy. WA has done some initial tests but are awaiting the matching probe to ensure accuracy. I believe several neurologists will be participating in the research so keep in touch with your neurologist and or the MS Society to see what opportunities are available.

I hope this helps please let me know if you need more info

Kind regards
MSWA

/end

[hwebb]

something really is happening in WA! So exciting. I have been trying to see if I could get Haacke's MRI protocol done somewhere (figured MRI may be more of a "black and white" result, and less dependent ont he skills of the analyst).

Sounds like doppler tests may be the testing regime for Australia (I guess it would be cheaper than MRI's).

hwebb

[CureOrBust]

Dr Dake suggested a CT scan from the top of my head to my Diaphragm. However, when I looked into it, it was said to provide the equivalent radiation exposure as 50-100 chest X-Rays.

If I am understanding it correctly, if you have severe twisting below your neckline, although Dr Haakes protocol should pick up the reflux caused, it will not give you a "pretty" picture of it.

I had the Dopplers performed, and they found a reflux in my IJV (ie 1 failure, not 2 out of 5 as expected by Zamboni's research). I also had an MRV of my head and upper neck. Although they found on one side my Jugular was smaller than the other, there were no obvious stenosis. I am now trying to get an MRV performed down to my diaphragm. As well as an SWI of my head.

[suze]

I have PPMS and see my neurologist in Perth annually.
When I last saw him in April this year, he gave me a print out of Claude Franceschi, "The unsolved puzzle of multiple sclerosis and venous function". Papers by P Zamboni are listed as two of the references. I didn't discuss CCSVI with him but he's obviously watching it all carefully.

Years ago I asked him about MS being autoimmune, and his answer was "well it could be, but we actually don't have any evidence that it is".
There are good neurologists that will use hard evidence to form their opinions. I guess we just have to hope there are enough of them.

[reg613]

Brainteaser....
way to go. It helps that this doctor is fresh from hearing Dr.Simka- speaking with peers is always more convincing for the docs.

The thing that really pushed it over the edge for Dr. Dake was that no one has ever looked at the jugular veins in relation to brain health before. No one. That simple fact astounded him. How could we know about the venous system for the liver, kidneys, heart- and understand how problems with drainage affect those very important organs....AND HAVE NEVER STUDIED VENOUS RETURN OF THE BRAIN? And yes, being a part of something so revolutionary excited him enough to put his very successful cardiothoracic career on hold....to work with MS patients exclusively for the last six months.

I hope your vascular doc sparks to this. I honestly don't think I "sold" CCSVI to Dr. Dake as much as it "found" him....and for that part, I also recommend prayer.
let us know how it goes-
cheer

The reason why no one has studied the venous system to the brain before is because THEY HAVE! and it was buried!

Prior to WW2 they were judiciously on the trail of the venous connection and not in a hot and bothered way with the "bling" and gabbing of today's style of medical business. Doctors were actually seeing to getting MS out of the way. The main obstacle had been Freud and his "hysteria" for this and "hysteria" for that.

It's almost as if WW2 was started to prevent MS from being fixed (joke?) With no more MS there would be no future organ transplants or stem cell therapy. MS is a great cover for the thousands of people needlessly murdered in hospitals for their organs. These doctors kill on one hand, and then do this useless contrived research to give the impression that they care about the brain injured and the brain damaged. Not.....!

MS, as long as the treatment was buried (like toothpaste that really does stop cavities, and a light bulb that does burn forever) was a situation with tons of potential. Best of all, it was a mechanical problem that affected mostly people in the Northern hemisphere or in other words, the polite, complacent crowd who never get their britches in a knot and have that stiff upper lip to tolerating everything.

Well, the stiff upper lip has been the cause, literally and figuratively of MS.

In Northern hemispheres people are always stiffening themselves up against the cold. All that hunching up 6 months a year isn't good for the jugulars. Throw in some routine forceps deliveries of babies and sports concussions to prime the candidates and you've got a fantastic reason to start a "research industry for an illness that will never be allowed a cure" until they say so.

The first thing people should do (and hell, this is only my intuition talking here along with well-directed googling) is STOP giving to the MS Societies. You are helping create and perpetuate MS! No research is needed. Consequences of MS like numbness and disability need no research either. The MS societies are just about decor and infantile niceties.

This illness has been nurtured for 50 years as a great industry. Imagine the billions of dollars made in all aspects of it because nice people believed that doctors care. Behind your back they are saying "Ah, they enjoy having it... All the medications make them feel special." They say this is their product to you. THIS is what they are researching! How excited you get. How you bond over it. How you socialize and compare notes. They research how no one ever gets angry and you keep going.

I figure the Zamboni thing might be intentional. The same way Christiaan Barnard was the goofball they got to suddenly and dramatically throw organ transplant on the map. After Barnard went and "over-zealously" transplanted a heart, the more sedate fathers of medicine came into the picture and said, "Ah look what you've gone and done, now we have to keep going..."

Zamboni has a similar appeal. I don't have a fully formed theory yet but I think it may have something to do with stem cell research probably reaching a plateau where they are about to make an announcement and don't need MS as much as a cover.

Remember stem cells come from harming babies, another thing that MS is meant to cover up.

Neurology is a sinister thing. Furture medicine has everything to do with replacement body parts. They have held the all the secret goings on at bay with pretending they care about MS.

[hwebb]

Hi Aussie action people,

just in case you missed it - I noticed that someone has started a new topic on Doppler ultrasound availability in Melbourne (it's in the CCSVI forum).

hwebb

[friday_fc]

Hi Aussie action people,

just in case you missed it - I noticed that someone has started a new topic on Doppler ultrasound availability in Melbourne (it's in the CCSVI forum).

hwebb

many thanks for that hweeb. checking it out next.

my next questions here were about how available these Doppler tests (in Sydney for example) were and how likely is it to get our neuros to refer us to a technician for investigation. I'm a pensioner (like some others) so would medicare cover that referral and if not, how much would it be approx?

[Sikosis]

Interesting ... I went to my Neurologist in Brisbane last week and I opened up with "well, I guess you probably know what I'm going to ask you about ?" thinking he would know about Dr Zamboni's Liberation Treatment, however, he didn't and when I mentioned it to him -- he began to scoff and was saying stuff like "oh yeah and how does he do that ?" I replied, well I'm no Doctor, so I don't know.

He then went on to talk about all the "crackpot" ideas out there and not to get my hopes up. Honestly, I wasn't get my hopes up about anything, I just want people to take things seriously. I want people with greater knowledge of the human body/brain to get involved, to start discussing it -- not just dismiss it as though it's snake oil.

This my first summer with MS and heat is such a killer. I had no idea how bad it was going to be.

[suze]

I think maybe we need to lift the profile of this development. Most people, including neurologists I suspect, haven't heard of it.
Perhaps we should send some links to Dr Norman Swan at The Health Report at Radio National (amongst others) I'm sure he would be very interested. He's known for exposing medical fraud, and is interested in new research etc.
http://www.abc.net.au/rn/healthreport/contact/

[mazza]

I did send a link to Norman Swan a few weeks ago but the more people do this the better. My neurologist is aware of Zamboni's work but was not prepared to help me follow this track. It could be a long slow process but let's all keep chipping away in whatever way we can.

[Brainteaser]

XX

[hwebb]

Hi Phil,

haven't heard (or is that "read") from you in a while. I hope you're progressing well?

hwebb