This Is MS Multiple Sclerosis Knowledge & Support Community

GIAN WHAT A WONDERFULLY TO THE POINT LETTER. UNFORTUNATELY IT WOULD GO IN FILE G. PROTESTS ARE REALLY THE ONLY WAY FORWARD AND RECRUITING AS MANY VASCULAR SURGEONS, CARDIOLOGISTS TO JOIN THE GREAT SUGGESTION OF SQUEAKY CAT THE MULTIPLE STENOSIS SOCIETY. THERE IS AN INTERVENTIONAL RADIOLOGIST IN CANADA TRYING TO RAISE FUNDING FOR A LARGE SCALE STUDY THIS MIGHT BE A GOOD PATH TO TAKE.

LIVA

I was also angry but not surprised at the response so I sent the following reply:

"With regard your comments concerning research I would point out that
Buffallo University in the US is at this moment conducting research and so
far report the results encouraging. It would seem that the government has taken a very negative stance without being aware of all the facts.

I would rather the government take a positive pro-active stance and enquire as to what could be done to instigate research of this potentially
beneficial treatment. I would also point out that testing for CCSVI is
available in the UK.

It does not encourage trust if this government does not avail itself of all
facts before responding in such a negative fashion.

I look forward to your early response and to the general election."

Why don't we all reply to the gov response. Seems the gov looked into CCSVI as closely as they looked into the WMD's in Iraq.

Linda

Seldom have I encountered a group of people as eloquent, companionate, brave and intelligent as the people I have met on this forum. Sir Winston Churchill also said “Never, never, never give up”. It is time to launch a GLOBAL PETITION! We are 3.5 million strong. Let’s raise havoc and hell. Let’s march on the bastion of vested order and vested interests. It is our lives we are talking about!

Is there’s anyone who knows how to setup an online petition? If so, please drop me a message, we have no time to lose.

http://www.care2.com/

This site has a massive community and would be very willing to shout along with you.

They have a petition section that quickly generates responses.

PETITIONS AND LETTERS WILL NOT WORK AND WILL PROBABLY JUST BE BINNED. READ CHEERLEADERS POST IN THIS THREAD IT REALLY OPENED MY EYES. THE HEAD OF THE MS PANEL IS A EMINENT CAMBRIDE NEUROLOGIST IN LEAGUE WITH PHARMAS. HE IS WHO THE GOVERNMENT GOES TO ON CCSVI MATTERS. HE WAS THE FIRST TO PUT DOWN THE WHOLE IDEA OF THE ZAMBONI TREATMENT. WE NEED VASCULAR SURGEONS IN THE MS SOCIETY. WE HAVE TO PROTEST OR FIND A WAY LIKE AN INTERVENTIONAL RADIOLOGIST IN CANADA IS TRYING TO RAISE MONEY FOR A LARGE SCALE CCSVI STUDY. THE NUMBERS WILL SHOW CONCLUSIVELY THE PROOF WE NEED. THE MORE VASCULAR SURGEONS AND DOCTORS WE CAN GET INVOLVED THE BETTER. THE TRACKING SITE ON THIS SITE IS ALSO BECOMING MORE SATURATED WITH THE PROOF. THEY ARE NOT LISTENING TO US BECAUSE THEY ARE AFRAID WE ARE RIGHT. IT ALL BOILS DOWN TO MONEY. WE HAVE SO MANY SYMPTOMS AND CAN USE SO MANY DRUGS THEY DON'T WANT US TO BE CURED. HARSH BY I THINK IT IS THE TRUTH. WHY ELSE ARE NO UNIVERSITY STUDIES BEING DONE IN THIS COUNTRY.

LIVA

Liva, you are right, but I believe it is not a either or, but and and. The louder we get the more traction is added to the process of changing the status quo. A petition is not the holy grail, but could mean another brick in the wall. Asher

I JUST SERIOUSLY FEEL A PETITION MAY MAKE US FEEL IKE WE ARE DOING SOMETHING BUT IT WILL BE REJECTED AGAIN. WE NEED UNDENIABLE PROOF AND EVIDENCE. I READ SOMEWHERE ON HERE A PERSON WHO HAD TREATMENT DONE IN ILLONOIS. FOR FIVE DAYS THEY FELT GREAT ON THE SIX ALL THEIR SYMPTON CAME BACK. THEY HAD ANOTHER DOPPLER IT SHOWED THE VEIN HAD CLOSED UP AGAIN. SO THAT IS WHY SYMPTOMS CAME BACK. THEY WERE NOT STENTED HENCE IT CLOSING UP. THEY ARE NOW WAITING TO BE RETREATED WITH STENT. IF THIS ISN'T PROOF CCSVI CAUSES MS WHAT IS.

LIVA

You are right Liva, but how do we get heard and how do we mobilize the med. community?

SOMEHOW WE HAVE TO GET VASCULAR SURGEONS ON BOARD. MAYBE EVEN CARDIOLOGISTS SINCE THEY HAVE DONE ANGIOPLASTY ON ARTERIES FOR YEARS SO THIS PROCEDURE WOULD NOT SEEM SO STRANGE TO THEM. PERHAPS RADIOLOGISTS AS WELL AND DOCTORS WHO SEEM NOT TO SIDE WITH PHARMA NEUROS I HAVE ONLY SEEN MY DOCTOR FOR YEARS AS I DID NOT WANT STEROID TREATMENT NOR CHEMO. GEE AND THEY CALL ZAMBONI TREATMENT RISKY. WE JUST HAVE TO TRY TO STEER MS SUFFERERS AWAY FROM NEUROLOGISTS. I WOULD KIND OF COMPARE IT TO USING A PSYCHOLOGIST OVER A PSYCHIATRIST. THE LATTER BELIEVE THAT PILLS RATHER THAN COUNSELLING ARE THE ANSWER. I AM JUST THINKING OFF MY HEAD. I REALLY THINK WE NEED TO SOME HOW FUND A PRIVATELY DONE LARGE SCALE STUDY. I AM GETTING MY TREATMENT SOON BECAUSE I AM REALLY PROGRESSING FAST BUT IF I WASN'T THINK IF A BUNCH OF PEOPLE TOOK THE MONEY THEY WILL SPEND TO TRAVEL SOMEWHERE AND ALL IN THE 100S PUT IT TOGETHER AND GOT RDIOLOGISTS AND VASCULAR SURGEONS, NURSES AND DID A HUGE STUDY. MAYBE HOLD SOME FUND RAISING EVENTS AND GET CELEBRITIES INVOLVED. MAYBE I AM COMPLETELY OUT OF THE BALL PARK.

LIVA

Love your idea of funding a study. Worth a new thread. Spinning off ideas is GOOD, and a resulting call for action is is GREAT. I'm of to my IBT

But the petition clearly did work, it helped to raise much needed awareness about the vascular connection to ms and even got a response.

A film about a prisoner who wrote a letter every week to get a library in the prison for inmates, ended up writing a letter every day and he got the library

THAT WAS THE SHAWSHANK RDEMPTION A CLASSIC. I HAD A REALLY GOOD THOUGHT THOUGH. ESSENTIAL HEALTH COULD BE THE GODSEND. THEY COULD PUT THEMSELVES UP IN THE FORFRONT. THE LARGE SCALE STUDY COULD START HERE. WITH ENOUGH FUNDING THEY COULD DO THOUSANDS. THEY SEEM TO HAVE SUCH A GOOD FULL APPROACH TO MS IN ALL ANGLES. IF WE COULD GET MONIED PEOPLE INVOLVED THEY COULD REALLY HAVE A GLOBAL AFFECT. THE RESULTS AND EVIDENCE COLLECTED COULD BE AWESOME. IT IS JUST AN IDEA.

LIVA

Asher wrote:Love your idea of funding a study. Worth a new thread. Spinning off ideas is GOOD, and a resulting call for action is is GREAT. I'm of to my IBT

Funding a study has been the stumbling block in my research for 17 years.

Varicose veins or chronic venous insufficieny is surgially treated and destined to failure as the venous load is shifted to other veins causing more problems, requiring more surgery. Great for profit in the sick business.

Varicose veins respond to IBT, proven photographically with Alun and others.
http://www.thisisms.com/ftopic-voteresu ... erasc.html

The poll also shows a correlation with CCSVI ms and Chronic Venous Insufficiency or varicose veins etc.

IBT alters the pressures inside the veins bringing them back to normal. My argument is that it can do the same for CCSVI, which is a name borrowed from venous insufficiency in the legs after all.

Rather than fix the narrowing why not address the postural connection that causes the narrowing instead?

I AGREE IBT HELPS BUT IT DOESN'T STOP THIS. THE RESULTS OF THE TREATMENT ARE INCREDIBLE AND IT REALLY NEEDS TO BE PUT IN THE FOREFRONT. I NOW IT IS HARD TO GET FUNDING BUT WE ARE NOT JUST ORDINARY PEOPLE. MS SUFFERERS ARE ARARE BUNCH OF VERY HARDY STRONG PEOPLE. WITH WHAT WE DEAL WITH ON A DAILY BASIS MOST PEOPLE COULD NOT HANDLE. THIS IS JUST A STUMBLING BLOCK. WE ARE A VERY DETERMINED BUNCH. WE WON;T BE QUIET OR SUPPRESSED. WE HAVE TO GET A LARGE SCALE STUDY. I THINK MOST US BELIEVE THIS TREATMENT IS THE ANSWER. I KNOW I AM COMPLETELY CONVICED THAT IS WHY I AM GOING TO POLAND IN A FEW WEEKS.

LIVA

Whyarewehere, you are right Gordon did not write the answer... In fact I don't think any one wrote an answer to the petition at all, because it is the same answer, in some parts word for word, that people who have written to the Health Department through their MPs have received. So it is a cut and paste job from information that is at least 6 month old...