This Is MS Multiple Sclerosis Community: Knowledge & Support

Saturday at 11 a.m. CCSVI will be discussed on the CBC radio show White Coat Black Art.

Below I have cut and pasted the post from the CBC Radio website.

I am infuriated by the statement that I have bolded. Have offered some feedback, and thought I would post in case anyone is interested in giving feedback.

Judging by this post from their site, I doubt the broadcast will be worth listening to!


Saturday September 11, 2010
WCBA Season Debut

I'm thrilled to say we're back with a new season of new episodes of White Coat, Black Art beginning with today's episode. And this season, we're on for the first time with a full-length season of shows. Today, a critical appraisal of the reaction - inside and outside the medical community - to the Zamboni procedure for patients with multiple sclerosis or MS. The treatment is also known as venous angioplasty to relieve chronic cerebro-spinal venous insufficiency (CCSVI).

Canada has one of the highest rates of MS in the world. Yet the Zamboni procedure is to all intents and purposes not available here, although a tiny number of procedures have been done. It's because most Canadian MS specialists and the MS Society of Canada dismiss the Zamboni procedure as unfounded and unproven. They're taking a wait-and-see attitude. Meanwhile, Canadians go overseas and pay out-of-pocket for the procedure.

This week, I talk with Dr. Paul Hebert, editor-in-chief of the Canadian Medical Association Journal, about why MS experts are so opposed to the procedure -- and what they have to lose if it does enter the medical mainstream. And, we take a close look at the media-led hype that may be giving patients false hope.

Tune in Saturday at 1100 am (1130 am in Newfoundland and parts of Labrador) or Monday September 13 at 1130 am (noon in Newfoundland and parts of Labrador).

Let us know what you think. Post a comment here or email me at whitecoat@cbc.ca. Or if you prefer the old-fashioned touch, our vox box number is 1-866-648-6714

It's posted now on their page:
http://www.cbc.ca/whitecoat/

Oh Oh. This is a very different overview of what will be on air than what was posted earlier this week. Considering that Dr. Paul Hebert (Editor-in-Chief of Canadian Medical Association Journal who co-authored an earlier editorial) is the featured guest, it is possible the CMA has influenced a change in Dr. Goldman's focus.

Once again, it seems the Canadian medical experts in CCSVI like Dr. McDonald and Dr Godley are excluded. Not a good sign.

I'll be tuning is as will many of my friends.

the author did a good job of pinching all the right nerves...
who knows, maybe cbc will rally our cause? one can hope..notice that the MS society was described as CCSVI dismissive
going to walk my sweet pooch, put the coffee on and pull up my chair..

this is good

it's long

Yes Blaze, your take is the same as mine.

PCakes, the author of the blurb I cut and pasted in my post is the doctor who does the show. He is basically stating that the whole CCSVI thing is a media hype and giving persons with MS false hope.
So it seems that CBC will not be rallying to our cause, but rather damaging our cause.

I listened to the show a while ago. The general message seemed to be that CCSVI is a media hype which desperate MS patients are buying into.

Listening now.. they are playing and bashing blurbs from other networks.. primarily CTV.. sigh.. it's as bad as Canadian politics.. seems the only way to get ahead is to attack the competition.
What happened to research and reporting of the facts.

Before I get jumped on, I am not saying the facts should only support ccsvi.. I just wish that any reference to published papers and research results would be read directly from said documents. Not someone's biased reflection.

aaaarrrgh .. the speaker has just implied that these 'glowing' anecdotal reports might only be coming from the treatment facilites!!! I am imagining Ginger's head exploding!!

"The procedure and science are 'way out there'"???!!! blood drainage from the brain is poorly researched. Well get on it guys and gals!!! Good thing plumbers don't ignore our home drains.. the analogy is clear!

Vascular radiologist quoted as saying. “most of our dialysis patients have blocked veins” “why no MS in them?”...I ask.. have their veins been blocked/compromised for 30 plus years?

Cognitive dissonance...sigh

i SUGGEST WE ALL POST A COMMENT AT THE WEB SITE...

It's just a radio show. The guy said that patients were going over the doctors' heads. To what authority does he think patients are appealling?

0. Rules of science, research, medicine, thumb?
1. Hospital Review Boards?
2. Legislatures?
3. The law?
4. Consciences of Interventional Radiologists?
5. Patients themselves and their families?
6. God? Simple human nature? Morality?

Let them live.

Look folks, look into your consciences.

Those people on those hospital beds, or beds at home, who have been told for all these years that they have 'MS', and that there is nothing that can be done for them: you may be near one, or even be one yourself.

Do they(you) deserve to die because they(you) cannot have venoplasty done?

Either they(you) are getting sicker, can't sit up, have a feeding tube, or not.

Either the problem they(you) have is auto-immune, diagnosed as 'MS', going to be the thing that ends up killing them(you), or not.

Time will tell. Let them live.

If a simple balloon dilation of some of their(your) neck and chest veins can save some of them(you) from some of the suffering, and possibly allow their(your) loved ones to enjoy the patients'/your short time on this planet, and possibly allow them(you) to enjoy a little more of what is left of their/(your) short time on this planet, should they(you) not be allowed to have it?

Let them live.

Even if the accident of their(your) last years has included a diagnosis that is in question and is currently thought of as 'MS'.

Even if the accident of their(your) birth or some other mistake during their(your) lives has resulted in them(you) having Canadian citizenship.

Even if they(you) happen to live in a community full of neurologists, with only one Interventional Radiologist willing to give this procedure to them(you) in a thousand mile radius.

Come on, folks, these people are your sisters, brothers, fathers, mothers, sons and daughters, uncles, cousins, aunts, friends.

Let them live.

I don't want to be any more petrified that a five-year-old girl whose father has fallen through this man-made crack in our (health care/legal/political/medical) system will continue on her father''s downward spiral. At her age, can she have done anything to deserve that?

I want people to know I care. Even though I never met them, don't know their names. I want them to live. Please let them live.

Please.

Let them live.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

make sure you listen to the whole thing. Near the end he pulls out the positive stories like the ulcer example. Really he does a lot of trickily positive blabbing inside his staunch religious rhetoric. The fact the show makes you feel bad for neuros who spent 30 years on a wrong theory...(70 years?) is a good sign..

when i hear someone say there's been many MS cures before , i think NOT This again ! the CBC has been such a disappointment from the beginning . i remember Peter Mansbride saying "and do YOU (the viewers) want to pay for it". i think they have a vested interest in keeping MS going .

I don't know if the CBC can have a vested interest in anything, but maybe that's a lot of people's problem: they don't know how to believe it. Maybe they just wouldn't know what to do about it if they did believe it. It's like somebody saying they know what causes cancer, only it's a smaller scale.

Yeah, yeah, we've all heard it so many times before. Don't believe everything you read on the Internet/see on TV/read in the paper/see in front of your own eyes. Hey wait, strike that last one. Oh, you have seen it? Oh, that's just an anecdote. Probably the placebo effect.

See we can't just beLIEVE it because then we'd have to think about so many more things, and what about Aunt Mabel, isn't she in the hospital with a feeding tube, and can't talk? You think this would help her? Gee, I haven't thought about her in ages...

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Denise, 99gabbycats Youtube postings are worth a watch by those that dismiss the procedure.

...or think the 'glowing' reports come only from treatment centres