This Is MS Multiple Sclerosis Community: Knowledge & Support

Like many of you I have just received a copy of this and I am more than furious at the utterly careless and negligent contents of the reply. I could not stop myself making a few obvious notes.

This is the reply.

The Government is aware of Dr Paolo Zamboni’s findings. However, as this is the only piece of research on the link between CCSVI and MS that is currently available, it is important to approach such findings with caution until a further review of the research has been conducted.
A number of medical advisers to the MS Society have read the papers published by Dr Zamboni, and have heard him lecture on the subject. The advisers have provided the following statement about the alleged link between MS and CCSVI:
We are not convinced by the evidence that blockages to draining veins from the brain are specific to people with multiple sclerosis, or that this explains the cause of multiple sclerosis at any stage of the condition.
We are all agreed that people with multiple sclerosis are not likely to benefit by treatments that dilate blood vessels and consider these procedures to carry risks with no evidence for benefit.
The treatment for CCSVI is not available for patients with multiple sclerosis in the United Kingdom because there is no convincing evidence to suggest that it is safe or beneficial to people with MS.
The Government is determined to make the UK the best place in the world for health research, development and innovation and to invest its substantial health research budget in the best possible way.
The Government’s research strategy ‘Best Research for Best Health’ is resulting in an expansion of the Department’s research programmes and in significant new funding opportunities for health research. The National Institute for Health Research programmes support high quality research of relevance and in areas of high priority to patients and the NHS.

1. “as this is the only piece of research on the link between CCSVI and MS” - This is far from being the only piece of research. (Zamboni’s papers alone are not about the same piece of research.)

2. “to approach such findings with caution until a further review of the research has been conducted.” - Approach with caution!!!???.. until further reviews. Further reviews had already been published before this (GB’s) response appeared. So what does this mean?

3. ‘A number of medical advisers” - did this include phlebologists? Pharmas? Not just the MS society?

4. MS Society views of a link between MS and CCSVI!!!??? Enough said.

5. “people with multiple sclerosis are not likely to benefit by treatments that dilate blood vessels” - What about people with CCSVI?

6. The treatment for CCSVI is not available for patients with multiple sclerosis in the United Kingdom because there is no convincing evidence to suggest that it is safe or beneficial to people with MS. - CCSVI is not contested but treatment must be withheld??

7. This is a very shoddy and poorly researched response. It is in total dismissive, insulting and derisory. It shows no regard whatsoever for the health of the 10 thousand people who signed the petition and relies for its validity on the opinion of people who clearly show themselves ignorant of the dozens of relevant research papers. It also misses the point entirely that CCSVI exists, has a massive detrimental effect on health and has several well tested treatments none of which are available in the UK because no testing for the condition is available.
8. This response from GB is simply an attempt to ignore this petition. There is not even a sense that this research is something interesting that must be further researched. The impression given is that this is nonsense and beyond consideration. “We are all agreed...” implies there is not even room for honourable dissent. This is very far from good enough.

I could rant on a lot longer but I wont. Suffice it to say that something must be done. If GB was in front of me now I would certainly give him a black eye. I am not sure what else needs to be done. Maybe another petition asking GB to stop taking the piss and give us a proper answer.

Anyone got any sensible ideas?

i AGREE WITH EVERYTHING YOU HAVE SAID, EXACTLY WHAT WE ALL ARE THINKING.
TYPICAL OF GOVERNMENT.
I AM GOING TO POLAND ON 19TH OF APRIL FOR MY PROCEDURE. WHAT WE NEED TO DO IS HAVE EVERYONE THAT HAS BEEN LIBERATED DOCUMENT THE RESULTS. WE CAN THEN PRESENT ALL THE RESULTS.
IT WILL ALSO BE VERY IMPORTANT THAT ESSENTIAL HEALTH POST THEIR RESULTS WITH ALL THE TESTING THEY WILL BE DOING IN JULY AND AUGUST TO SHOW THAT MS SUFFERERS ARE LINKED WITH CCSVI

WE CAN ONLY KEEP THE PRESSURE ON AND TRY TO CONTACT NEWS MEDIA AS MUCH AS POSSIBLE. I AM TRYING TO CONTACT BBC TO SEE IF THEY WANT TO COVER MY PROCEDURE AS THERE IS A MEDICAL REPORTER CALLED MICHELLE ROBERTS WHO DID A GOOD ARTICLE ON CCSVI

Just ignore press like this, and keep informing people of CCSVI.

GBS DAYS ARE NUMBERED ANYWAY SO HE CAN JUST GO INTO OBSCURITY AND BE REMEMBERED AS OUR WORSE PM. WE ARE A WORLDWIDE FORCE AND OUR NUMBERS ARE GROWING. THEY REALLY JUST HAVE TO LOOK AT THE MRVS OF MS SUFFERERS THE EVIDENCE IS THERE TO SEE.

LIVA

Here is the head if the medical panel of the UK MS society. Inventor, award-winning neurologist and chief proponent of Campath-

http://www.neuroscience.cam.ac.uk/direc ... irCompston

His was the first voice out on Dr. Zamboni's research. Here is the official MS Society's response from last fall-



Dr. Compston wrote about the venous connection in his book, McAlpine's Multiple Sclerosis (page 35) and discounted it in one scant page....despite 140 years of research connecting the venous system to MS.

link

Here is the story of the 30 years developing Campath...a wonderful tale of the UK successful merging of scientific minds and biotech companies.
http://users.path.ox.ac.uk/~scobbold/ti ... MPHIST.HTM

http://www.msassociation.org/news_cente ... le.asp?a=3

Do some research. Hang in there-
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

THANK YOU SO MUCH FOR INFO CHEERLEADER. NAME SUITS AS YOU REALLY WORK TO KEEP US WHEREVER WE ARE FOCUSSED. I AM GETTING TREATMENT IN POLAND BUT WHEN I AM STRONGER I REALLY WANT TO FIGHT FOR THIS. AT THE MOMENT OUR GOVERNMENT IS FACING AN ELECTION SO IT WILL BE HARD TO GET IT TO LISTEN. MIND YOU THEIROUR A LOT OF US WITH FRIENDS AND FAMILY BACKING US AND WE VOTE. TOO BAD A PARTY DIDN'T JOIN THE BAND WAGON. YOU HAVE SUCH GRAT IDEAS AND IT IS GREAT YOU ARE PASSING ON YOUR VASTE KNOWLEDGE.

LIVA

That kind of negativity is totally unwarranted. I agree with you, it seems as if they've already closed the door on any possible future findings. As per cheer's email, the conflict of interest is palpable.

READING THE INFO IS FRIGHTENING. THE DRUG COMPATH HAD FAIRLY SERIOUS SIDE EFFECTS. YET THEY MARKETED IT GIVING IT GLOWING RESULTS. THE HEAD OF OUR SOCIETY IS A CAMBRIDGE NEURO WHO IS OBVIOUSLY SLEEPING WITH THE DRUG COMPANIES. WE REALLY HAVE TO BAND TOGETHER AND PROTEST. WE NEED AN ADVOCATE TO TAKE ALL OUR TESTING RESULTS AND IF ANY OF US HAVE TREATMENTS THOSE RESULTS TO 10 DOWNING STREET. I OMLY WISH MY UNCLE WHO WAS JIGH UP IN THE GOVERNMENT WORKING ON REFORMING THE NHS AND WORKED CLOSELY WITH THE WHO WAS STILL ALIVE. HE WILL BE ROLLING IN HIS GRAVE THIS IS SO WRONG. MAYBE WE SHOULD TRY TO GET ESTHER RANTZEN ON BOARD.

LIVA

Ah, brilliant!
I enjoyed that... Thanks

WE NEED SOMEONE LIE THAT TO FIGHT FOR US. I KNOW TOO BAD JEREMY KYLE IS SO BUSY. LOL I'D LOVE TO SEEM HIM LAMBASTE GORDON.

LIVA

I really doubt that Gordon Brown even wrote that. He probably just got it stuck under his nose to sign. In any case I don't think he is your worst GP, it's just that the media keeps telling us so. I don't think there's been a good leader since WWII.
Anyhow, it's the "advisors" you have to watch out for....little devils.
You really need to get a demonstration together....I think the visual impact of limping people with their little kids helping out, and wheelchairs, with a few happy people who had something done, might give them a thorn in their side.

I AGREE TO SOME EXTENT PM ARE FIGUE HEADS, THIS DAYS ROBOTS TO BE CORPORATIONS. MONEY IS POWER LOOK AT OIL COMPANIES WHY WITH ALL THE KNOWLEDGE AND SKILLS WE HAVE ACHIEVED OVER CENTURIES HASN'T A VIABLE SUSTITUTE FOR OIL BEEN DISCOVERED. WE MUST GET TOGETHER ON MASS AND FIGHT FOR OUR RIGHT TO CHOOSE WHAT TREATMENT WE WANT. IT IS JUST SO HARD BECAUSE WE ARE PHYSICALLY WEAK. IT IS SO INTERESTING THAT WHEN STUDIES ARE DONE IT IS WITH SUCH SMALL NUMBERS. IT IS AS IF THEY ARE TRYING TO PREVENT SHOWING THE HIGH PERCENTAGE OF HOW MANY MSERS HAVE CCSVI. SO IT MAKES IT SEEM MINISCULE. THE INTERNET IS STRONG AND A GREAT WAY TO GET LOTS OF EVIDENCE.

LIVA

I HAD AN OFF THE WALL IDEA. IF WE DID A BIG PROTEST WHAT ABOUT THE ONES WHO HAVE HAD THE TREATMENT WEARING TEESHIRTS WITH I HAVE BEEN LIBERATED ON THEM.

I should have known but I stupidly thought that there was some kind of humanity within the people in government; OBVIOUSLY NOT

I have been Liberated, 24th March, and although it is only one week since my procedure I, as well as all my family and friends, have noticed substantial improvements.

I now feel like I am beginning to get my life back but why would you want that, the government obviously want people pleading in the belief that it will fade away. They will be thinking, IT'S JUST A BUNCH OF MS PATIENTS SHOUTING ABOUT A NEW TREATMENT FOR THERE ILLNESS, THEY WILL QUIET DOWN SOON.

You are in for one hell of a shock, I was in Poland and the togetherness and determination of fellow MS'ers was something to behold. We will not be shot down like this.

_________________
<em>Badger
RRMS 2004</em>
Appt Katowice 23/24th March