General Chat

Well I hope patients who are desperate for a cure ask for an MRA before considering this treatment.

An MRA is absolutely essential to check the blood supply throughout the brain BEFORE contemplating such radical treatment.

Sue

I will keep an eye/ear out for anything interesting in the debate. I guess there must be a lot of political pressure being brought to bear (not just in Canada) for governments to investigate/fund this procedure, for it to be the subject of four hours in our HofC!

It would be good to think they might have found a cure, or at least some help towards a cure.
I suppose all cures of disease started as what seemed to be unbelievable at the time.

MSIF has launched a statement on CCSVI summarising key findings and current research and stating its commitment to making sure information on CCSVI is shared openly between its members worldwide:

“MSIF will continue to facilitate an open exchange of information amongst its members in relation to the research that is being undertaken. Several MS societies are promoting further research in CCSVI as a matter of urgency in order to evaluate the hypothesis of a link with MS, and what could be the short and long term benefits and risks of treatment.”

The statement also warns people with MS not to seek unproven treatments outside of clinical trials:

“The risks and benefits of procedures to treat CCSVI have not been established by properly controlled clinical trials. Unless and until strong supportive evidence is produced, and until the risks of treatment are thoroughly assessed, any procedures to mechanically correct the purported problem outside of a clinical trial are not recommended.”

What are the risks of treatment?

In March, Stanford Medical Center suspended surgery after two people developed serious complications. A death from a brain haemorrhage, whilst not directly linked to the surgery, led to concerns about adequate evaluation of risks. A second person required open heart surgery after a jugular vein stent dislodged.

Personally-I'd give it a miss until there's a lot more reseasch-the treatment is more freely available overseas.You have to bear in mind the "Rip Off" Stem Cell treatment where people paid thousands of pounds for something that would never work,all the clinics were shut asap.

I would be interested to hear what happens,thanks.

It will be interesting to see how this works out and will keep an open mind at the moment.

My mum was diagnosed at the age of 32 in 1946 (they called it disseminated sclerosis in those days) and she died at the age of 87 in 2001. She was wheelchair bound for over 30 years but was ever gracious and mostly uncomplaining.

She didn't suffer from pain as such, it was more like an acute weakness accompanied by some frustration! A very bright and intelligent lady who kept her intellect to the end and was an inspiration to all who crossed her path.

Hopefully.....one day.......a cure will be found.

Cx

Yes thats what i had read and to me it would make sense , i would be a guinea pig lol, im seeing my doctor a week tomorrow i want to know what to expect with what ive got im sure she cant answer that but will try, only thing is i have different types of pain its hard to work out which pain is which illness, hope it works for everyone suffering would be nice x

I would be very skeptical myself, but one never knows.

Basically, the treatment involves widening an artery to the brain. The doctor who developed it believes that people affected by MS have insufficient blood flow to the brain.


Here is an article from today's papers in Canada. As I understand it, the research teams are not testing the treatment, they are going to be studying MS patients to see how many really have the condition that the treatment is for, the blood flow problem.


http://www.nationalpost.com/
todays-paper/study+controversial+treatment/3145772/story.html

Canadian and American doctors are teaming up to conduct a $2.4-million, two-year research study to look at whether a controversial treatment for multiple sclerosis -- known as "liberation therapy"--is legitimate.

Seven funded teams -- four of which are Canadian -- will assess whether a syndrome known as chronic cerebrospinal venous insufficiency (CCSVI) has a role in MS.

The teams were selected by the Multiple Sclerosis Society of Canada and the U.S.-based NationalMSSociety.

"We're planning on doing diagnostic studies to confirm how common is this CCSVI phenomenon," said Dr. Anthony Traboulsee, who is heading up a group from the University of B.C., Vancouver Coastal Health Research Institute and the University of Saskatchewan.

The cross-border study follows the recent claims of Italian doctor Paulo Zamboni, who says that a relatively minor, cheap and safe treatment for CCSVI has had beneficial results with MS patients.

The therapy involves using an angioplasty-type treatment to clear the blockage of veins carrying blood from the brain. Dr. Zamboni's initial study found that 73% of patients who underwent the procedure reported a decrease in symptoms.

The findings have resulted in Canadian MS patients booking trips to Poland, Bulgaria and India to get the treatment.

The MS Society of Canada has said more research needs to be done before it can recommend the treatment.

The Canadian study will involve 200 people -- 100 with MS and 100 without -- to see if the CCSVI is a factor in MS.

Dr. Traboulsee said the study will not involve treatment of the condition.

Thanks janey, I'm not very good at understanding news papers and stuff, but i have read a few times that have got a cure but that's all i see not what it is or where it is, i kinda got my hopes up thinking it would really happen, or is this why people are traveling away for treatments , thanks xpuss xx

I don't know whether this will turn out to be interesting or not, but:

On Monday, June 14, our House of Commons will be holding a "take note debate on the subject of the measures being taken to address the treatment of multiple sclerosis".

Since I know there are some members here who are affected by MS, I thought I'd mention this.


What's a take-note debate?
A take-note debate is a motion before the House of Commons – using the words "that the House 'take note' of" – to ask members of the House for their views on an issue or aspect of public policy. No vote is taken during a take-note debate.


The reason is apparently that some people have been travelling from Canada to Europe for a controversial treatment based on a new theory about MS, and are calling for it to be made available (and covered by the health plan) in Canada.

This kind of debate consists of MPs making speeches of up to 10 minutes, and other MPs asking them questions for another 10 minutes, then on to the next MP.

As I understand it, this debate will begin at 7 pm when the House would ordinarily adjourn, and go on for a maximum of four hours. It can be listened to / watched on line, but obviously, this is bad timing for anyone in the UK -- 7 pm Ottawa time is midnight UK time.

The parliamentary webcast site does offer access to previous days' webcasts (although I've just tried one and haven't been able to get it to work). Also, Hansard is available on line the next day to read what was said.

If anyone is interested, just add a post to let me know and I'll post directions on Monday. This is the main page for ParlVu and the session can be accessed from there, but I will be able to post where to find the audio/video and transcript afterward.

http://parlvu.parl.gc.ca/ParlVu/UpcomingEvents.aspx?lang=en