Gordon Brown's Response to the UK petition

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby livabird » Wed Mar 31, 2010 10:41 pm

I AM SO PLEASED FOR VYOU BADGER I GO SOON. IF YOU READ THE STUFF CHEERLEADER POSTED IN THIS COUNTRY IT IS GOING TO BE A HARD BATTLE. PROTESTING SEEMS TO BE THE ONLY VIABLE OPTION. TOO BAD JOANNA LUMLEY DOESN'T HAVE SOMEONE CLOSE WITH MS. SHE IS A TRUE FIGHTER.

LIVA
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Postby Brightspot » Wed Mar 31, 2010 10:42 pm

AMcG
Thanks for posting the unfortunate and ill prepared UK govt. response and your analysis of it.
We are encountering similar obstacles in the way of govt. and medical community in Canada taking the lead from the MS Society. Keep up the fight. Keep patiently and persistently providing accurate information and demanding a coherent response.
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UPHILL BATTLE

Postby livabird » Wed Mar 31, 2010 11:34 pm

ALL,
I THINK WE ALL KNOW THAT IT WILL BE AN UPHILL BATTLE, PROBABLY AN UPMOUNTAIN BATTLE WOULD BE MORE LIKE IT.
WHAT WE HAVE TO REMEMBER IS THAT THE DOCTORS SITTING ON THE BOARD FOR THE MS SOCIETY, WHICH ALLEGEDLY HAD INPUT INTO THE OUTCOME OF THE PETITION ARE ALL "NEUROLOGISTS" AND SO FAR I HAVE NOT SEEN 1 NEUROLOGIST WILLING TO WORK WITH THE VASCULAR SURGEONS ON COMING UP WITH A SOLUTION FOR ALL THE MS SUFFERERS.

HOPEFULLY SOMEDAY WE CAN GET SOME VASCULAR SURGEONS TO BE PART OF THE MS SOCIETY AND MAYBE THEN THINGS WILL CHANGE

UNTIL THEN ALL WE CAN DO IS FIGHT TOGETHER TO TRY TO GET THE @£%$& BUREAUCRATS TO OPEN THEIR EYES AND FOR ONCE IN THEIR LIVES PUT THE HEALTH OF PEOPLE BEFORE THEIR OWN THICKNESS OF THEIR WALLETS
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Postby moochsid » Thu Apr 01, 2010 12:25 am

Ironically I read this a few minutes before my wife came back from the hospital bus fromEuromedic in Katowice and at first thought it a bad April Fool's joke.
Within a few hours her voice is stronger, she has sensation in her feet and some small improvements that I will wrote about on another thread.
Despite my obvious joy I still got very angry about the insulting tone of the response, particularly the rider about being committed to innovative research! But make no mistake don't make Gordon Brown the whipping boy here, ANY government is going to abrogate responsibility to that bunch of clowns called the MS society unless they are forced into action.
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Postby AndrewKFletcher » Thu Apr 01, 2010 12:34 am

Come on guys, did we really expect anything more from the UK Government?

I had that same response several times to many attempts to have IBT investigated further, always the same b.s. merry-go-round, passing the book appears to be a required skill for politicians.

By the way Churchill earned money from the war and was involved in his own expenses scandal: http://www.fpp.co.uk/History/Churchill/ ... venue.html
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Postby costumenastional » Thu Apr 01, 2010 2:20 am

What one should really expect i wonder...
I think that the more "advanced" a country is, the more it is ruled by lobbys. This is the cost of keeping the money flowing and the wealth concentrated. Always have been, always will.

Why should one care about what they say at the moment? They have the right to keep a distance since there is nothing proven the way modern medicine demands. From one point of view they are right. After all, they are not the ones suffering. Let's not forget that MS is one of the most complicated diseases around and while the Liberation seems to be helpful in many aspects, MS have many aspects more to reveal. Let s wait before we declare war.

I personally dont give a shit about official replies. I used to, but i started to think since thinking is not illegal yet. Like all of us i ll take it on my own because noone will save my life if i dont do whatever i can for myself. Should i wait until my country's public health system "approves" and cover my liberation expenses? I d do it if i had the time. So, no point shouting.
Get liberated one way or another and pray it will do the trick. If it works, it wont be so easy for them to act like that in a couple of years time.
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Postby sbr487 » Thu Apr 01, 2010 2:27 am

When CCSVI is proved to work and help MS patients, he will look like a big ASS, not that he is not one already ...
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Postby costumenastional » Thu Apr 01, 2010 2:35 am

Why would i care how Gordon Brown looks or will look in the future?
Why would i care how Papandreou looks in Greece? After all, they have a whole county to govern and while i understand how cruel this will sound, we are not the center of the world.

I only care about spreading the word and helping fellow ms patients to get tested and treated. If i manage to consider myself cured at somepoint, i will highjack a tv station and make my point. But this is not going to happen soon enough. Even if my symptoms fade away i will still continue to battle with the fear for some time. So, all i am saying is for each and every one of us to fight for our own selves and then for each other. Whatever there is to be achieved, it will only come through us. Sadly...
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Youtube Vlog your CCSVI Demands

Postby AndrewKFletcher » Thu Apr 01, 2010 3:01 am

You don't need to highjack a tv station. We have youtube now and it is far more powerful than any tv station.
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Postby costumenastional » Thu Apr 01, 2010 3:10 am

Hmm i dont know...
I somehow imagine myself on air in the news or something, holding hostages with an AK47 on hands, would make great ratings worldwide. Youtube is great but making them listen by force is way better.

Wishful thinking...
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Postby livabird » Thu Apr 01, 2010 3:26 am

IT IS TRUE IT ISN'T JUST GB IT WOULD WHOEVER WAS IN POWER. IT WOULD BE THE SAME. THERE IS TOO MUCH POWER IN BIG CORPORATIONS THEY SEEM TO RUN EVERYTHING. ALL THE MEDIA, INTERNET ARE GOOD BECAUSE IT IS SO GLOBAL/ THE PEOPLE NEED TO TAKE CONTROL OF THEIR LIVES. LIBERATION IS SO FITTING A NAME FOR IT. WE HAVE TO START A REVOLUTION. WE WILL BE HEARD. NO HOSTAGES THOUGH. LOL

LIVA

WE NEED TO BREAKDOWN THE MEDICAL COMMUNITY GET VASCULAR SURGEONS, RADIOLOGISTS, GPS ON OUR SIDE.
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Postby livabird » Thu Apr 01, 2010 3:37 am

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YEAH TIGER TIM IS SHOWING IMPROVEMENT. THIS IS GREAT HE IS SO HIGH PROFILE. I WAS WORRIED HE WOULDN'T AND THE POWERS THAT BE WOULD USE IT TO DISPROVE EVERYTHING. WE HAVE A CHAMPION FOR THE CAUSE.

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Reply to Gordon Brown

Postby GiCi » Thu Apr 01, 2010 5:10 am

Dear PM,
I have read the response of the government to the CCSVI petition and I must confess that I found it to be superficial and dismissive. Why?

1. The government has ask advice to a specific group of physicians, who dominate the MS societies and who have been treating for decades MS patients with all sorts of potentially dangerous drugs without having any proof regarding the etiology of the condition.
2. Zamboni in Italy and Zivadinov in Buffalo have demonstrated a strong correlation between MS and CCSVI, although of course correlation does not mean causality.
3. The liberation procedure, i.e. the balloon angioplasty of the jugular veins, has been performed by Zamboni with only minimal and infrequent complications. Zamboni has always professed his opposition to the usage of stents in the veins of the neck.
4. Dr Dake in Stanford started to treat patients and used stents and had two major complications including the migration of a stent into the right ventricle and his program has been halted.
5. Drug companies make a lot of money with the treatment of MS patients
6. The liberation procedure has the real potential of saving a lot of money for the NHS

I am afraid the neurologists will be soon proven to be wrong and the present goverment will regret its misjudgement of the petition. If I am right 80,000 Ms voters will not be too happy.

Yours faithfully

Gianfranco Campalani
Consultant Cardiac Surgeon
MS sufferer
Bilateral jugular vein obstruction
Two liberation procedures with immediate improvement
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Postby silverbirch » Thu Apr 01, 2010 5:12 am

Ahmeds new clinic Poland will be working closely with Neurolgist in their new clinic .

Hope fully the sheeps /puppets on a string we have over here as Neuro , Goverment will follow .

The days when we would leed as a Nation went with all the great leaders .
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Multiple Stenosis Society

Postby Squeakycat » Thu Apr 01, 2010 5:33 am

Perhaps it is time for people with MS in the UK to be represented at Number 10 by representatives of the new Multiple Stenosis Society to advance CCSVI research and treatment.
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