the world against ccsvier's

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
User avatar
sbr487
Family Elder
Posts: 865
Joined: Tue Nov 24, 2009 3:00 pm
Location: India
Contact:

Post by sbr487 » Mon Apr 19, 2010 7:28 pm

scorpion wrote:The data below, posted today on WebMd, breaks down what has been scientifically proven so far.

From WebMD:

In his first, small imaging study(Zamboni), all the MS patients had the blockages, while none of the healthy people did.

At the meeting, Zivadinov presented data on the first 500 participants in a new study, 289 of whom had MS. Results were less dramatic, with ultrasounds revealing blockages in 62% of MS patients, 26% of healthy participants, and 45% of people with other neurological disorders.

Miller tells WebMD that the conflicting results of the Zamboni and Zivadinov studies "raise a lot of questions."

Also, the findings do not prove cause and effect, as researchers can't say if the blocked veins cause MS or vice versa.

As for treatment, Zamboni has published a study of 65 patients who underwent an angioplasty procedure to open the blocked veins using a small balloon attached to a catheter inserted though a small incision in the groin. Most of the patients had fewer MS attacks, but the improvement was short-lived for about half.

Additionally, the study lacked any comparison group receiving placebo. Since MS often takes a remitting, relapsing course, it’s not known how many would have improved temporarily anyway, Miller says.
This is exactly the way an neuro would write an article and this is exactly the line of argument used by Dr. Stewart. Dr. Simka has already responded to these ... I have no argument with someone who has already made up his mind.

rssug, try to use a better way to argument next time. Do you have any objective argument to make or you are just going to use sprinkle random bullets?

User avatar
whyRwehere
Family Elder
Posts: 917
Joined: Mon Oct 03, 2005 2:00 pm
Contact:

Post by whyRwehere » Mon Apr 19, 2010 10:46 pm

Lyon,
Yes,I agree that foul language should not be used. It is simple to express our disgust or anger without having to offend everyone. In Cost. N's defence, I will just say, sometimes people who speak English as a second language, do not realise how offensive certain words are.
Why

User avatar
itsjustme
Family Member
Posts: 64
Joined: Wed Nov 08, 2006 3:00 pm
Location: Chicagoland
Contact:

Post by itsjustme » Tue Apr 20, 2010 5:36 am

scorpion wrote:I do not think Rebif is a company. Please share what part of the article you see as misinformation and what proof you have to offer showing otherwise. I would assume I will not get an answer but instead some kind of post saying to just ignore me. I do not want a huge argument just facts refuting the article from webmd. Please share.
Scorpion,
Well, you did say "please". So here you have it.

Ignorance. Plain and simple, ignorance. That's what I still have. I'm ignorant and trying to learn.

You see, this was a super short article and therefore by nature details of the whole story had to be selectively picked. There is just no room to include everything, like how the protocol Zivadinov used was different from Zamboni's which might explain the large statistical variation. Then I saw two sponsor ads for Pfizer and Rebif on the WebMD MS page. My conclusion: this article may be slanted.

I am ignorant. I did not know how much intertwining there was of doctors and pharmaceuticals. I thought this was information for information's sake. But I'm learning otherwise.

Case in point: on Friday I was watching the local news. Towards the end of the program were the day's health stories. The last story was about MS. I guess 81 MS patients were given Lipitor and after a year or so these people had fewer lesions. This information was presented at the 2010 AAN meeting in Toronto.

What? This is your take-away story from the AAN meeting? Lipitor? Not about some crack pot Italian with some controversial, bazaar, blocked vein theory? Lipitor?
The station then went to a commercial break...the first commercial was for, yep, you guessed it: Lipitor.

So let me get this straight. This station gets monies from Lipitor and then does a news story touting the benefits and then immediately airs a commercial for Lipitor? I know I'm light headed most of the time but you people are making my head spin.

User avatar
1eye
Family Elder
Posts: 3746
Joined: Wed Mar 17, 2010 3:00 pm
Location: Kanata, Ontario, Canada
Contact:

Post by 1eye » Tue Apr 20, 2010 6:32 am

Really, guys. If you are on here to proselytize or preach I think you need to be somewhere else. If you are a neurologist, aren't there sick people around somewhere you could diagnose? You're preaching to the choir of a different religion. Or of satan-worshippers if you prefer. But I don't think you'll save anyone any inconvenience, or money, by convincing them this surgery is unnecessary, dangerous, or too expensive.

See this month's MacLeans magazine, and read what those Canadians who have had it already are saying. If it were placebo effect, would someone who had just had it, say it was immoral to delay it, on behalf of others? She was thinking not about herself, but about another lucky soul there, who had just started on what looked like a surprisingly short trip back from a horrible imprisonment.

http://www2.macleans.ca/2010/04/19/the- ... %E2%80%99/

Give it a rest, please? There are more important things going on here (by and for MS patients) than flogging the bones of a horse that most MS patients have buried long ago. And stop trying to take advantage of the reduced cognitive powers of those that have MS. It will not work on me again. Nobody is afraid of la Liberazione and neither are the ones who control public and private purse-strings. The coach has left the station. If it were the milk run, and you didn't spare the whip, you might be able to get on, at the next town, but they're not coming back for you. It's non-stop, now. I'm not going to Kuwait.

Now if only I can get closer to the front of the line, by telling them I am a former patient of a certain neurologist...

My brain hurts.



Aspirin. It thins your blood...

User avatar
sou
Family Elder
Posts: 582
Joined: Sat Dec 20, 2008 3:00 pm
Contact:

Post by sou » Tue Apr 20, 2010 6:53 am

Let 's remember of a problem of our fundamental communication tool: language. Words are plain sound or drawings. It is the meaning we give them that makes them "meaningful" inside this world of facts, not things.

So, I want to make some questions about the meaning. What do you exactly mean when you say that CCSVI has to be proven to be the cause of MS? What would a good proof be for you?

Ancient Egyptians used a kind of geometry that helped them measure their fields. It did not have theorems or axioms. It was no science. But it worked well for its purpose. I remember when solving geometry problems of the kind" prove that the length of line a equals the length of line b. A proof could be:

a) the use of theorems and axioms or
b) a simple measurement and comparison of the length

a is science, b is not. But for practical reasons, just likes the Egyptians did, b can work equally well. If you asked them, they would respond that measurement proves the equality. So proof is a matter of meaning.

Personally, I found 3 blocked veins and opened them only after my vasc. surgeon insisted that they should not be blocked and that opening them is safe. Can I prove that I feel better? No! Do I feel better? Yes! It is a very personal choice.

Egyptians or Westerns? I would say: "Whatever the right tool for the job is."

sou

robbie
Family Elder
Posts: 1297
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Post by robbie » Tue Apr 20, 2010 7:04 am

Can I prove that I feel better? No! Do I feel better? Yes!
that is a good saying sou.
Had ms for 28 yrs,
8.5 EDSS
SPMS, 54 yrs old
Taking it day by day

User avatar
AMcG
Family Elder
Posts: 224
Joined: Thu Dec 31, 2009 3:00 pm
Location: UK
Contact:

Post by AMcG » Tue Apr 20, 2010 7:48 am

I do like what you say sou. But there is nothing unscientific about direct observation and measurement. Quite the opposite. I was taught it was the BASIS of scientific method.

User avatar
1eye
Family Elder
Posts: 3746
Joined: Wed Mar 17, 2010 3:00 pm
Location: Kanata, Ontario, Canada
Contact:

proof

Post by 1eye » Tue Apr 20, 2010 8:55 am

"I don't know, a proof is a proof. What kind of a proof? It's a proof. A proof is a proof. And when you have a good proof, it's because it's proven."

-Jean Cretien (former) Prime Minister of Canada, philosopher extraordinaire.[/b]

User avatar
Gordon
Family Elder
Posts: 296
Joined: Wed Jan 06, 2010 3:00 pm

Good afternoon to all

Post by Gordon » Tue Apr 20, 2010 9:39 am

United we stand - Divided we fall.

10 billion a year in revenue is a lot to fight for.

Why has the USA been so terribly quite. Shamefully so. Even Michele Obama is scared of these SOBS.

Gord

User avatar
msrelly
Getting to Know You...
Posts: 23
Joined: Mon Mar 15, 2010 3:00 pm

Post by msrelly » Tue Apr 20, 2010 10:22 am

This is an exciting time in MS research—let’s not put the cart before the horse, but let’s do things properly so that the most people can benefit. That means properly-done research that can be validated. Then, once that happens, the floodgates will open!

Full disclosure, I have loved ones and friends with MS and I want to see a cure. I have seen venous insufficiency first hand – I know it exists, I just don’t know what it means. I am also a strong supporter of the MS Society of Canada. Let’s all take a deep breath and do this right, okay?

Many posters on this site and others are talking about conspiracies etc. May I respectfully poke some holes in a few of the common arguments? (my comments below are not meant to be criticisms, but I know that tone and inflection don't come across clearly in a post, I just want to go on the record saying I don't believe that the neuro and MSS are trying to quash CCSVI))

Argument #1 - Neurologists don’t want CCSVI to be true, because then they’ll “lose business”. If MS was cured tomorrow, Neuros would still have plenty of work with Parkinsons, stroke, alzheimers etc. Even if venoplasty alleviates some of the symptoms of MS, it still remains a disease of the neurological system (brain, spinal cord).

Argument #2 - The pharmaceutical industry doesn’t want CCSVI to be true, because then they’ll lose business. Maybe they will lose some business, but again, MS therapies are but a very small part of their empire. Besides, guess who makes the stents and balloons for venoplasty: medical device firms that are often part of a parent company that also owns pharma cos. Everybody wins!!

Argument #3 - Medical researchers will lose pharmaceutical funding if they choose to pursue the CCSVI avenue—Only a portion of research funds at big academic hospitals comes from big pharma. Much of the money comes from University Foundations, Cdn Institute of Health Research, philanthropic donors, government.

Argument #4 - The MS Society is beholden to pharmaceutical companies and doesn’t want to anger them. In Canada, only 2% of the MS Society’s funding comes from pharma co’s, and of that funding, the pharmas may not advise the MS Society how to spend it.

Argument #5 – the MS Society doesn’t want a cure because it will put them all out of a job. Great!! That’s what we want, and that’s what the MS Society wants too. The MS Society in Canada is largely a grass-roots organization run in large part by volunteers, its not a big bureaucracy filled with highly paid execs.

Argument #6 – we should withhold donations to the MS Society because they aren’t giving enough money to CCSVI research. The MS Society spends about 80% of the money it raises: half of that goes to research, the other half goes to funding “on the ground” programs. Like helping people get supercheap physio or massage therapy, like helping them build a wheelchair ramp, like helping them with legal and tax advice, like funding self-help groups. If donations stop, so do all of those valuable programs, and that hurts the people with MS.

Argument #7 - the MS Society should direct all of its research funding toward CCSVI NOW!! There are many scientists and researchers out there who depend on MS Society funding for their research which is not CCSVI related. Without this funding, they would not be able to stay in Canada, expand their understanding of the cause of MS, share their info with other scientists around the world, research other avenues. Let's take Diabetes as an example: we know what causes it, we know how to treat it, yet billions of dollars are still spent researching it. MS is just the same, even if we find the silver bullet, there will still be avenues of research we need to pursue.

User avatar
fernando
Family Elder
Posts: 228
Joined: Wed Jul 15, 2009 2:00 pm
Location: Argentina
Contact:

Post by fernando » Tue Apr 20, 2010 10:45 am

Msreally,

For me it is much simpler. New ideas that confront the status quo are not well received even if they "sound right". We all have heard from top neuros regarding CCSVI the words "hoax", "no merit", "already old and tried", "venoplasty i's risky", "there were two deaths", etc.

The need of more research is granted, but we can't forget that there are turf wars in science, also.

User avatar
scorpion
Family Elder
Posts: 1323
Joined: Wed Nov 05, 2008 3:00 pm

Post by scorpion » Tue Apr 20, 2010 12:18 pm

Once again Costumentional I am sorry you are so upset with my post.
1. Is the information I posted not accurate?? I posted it because new people coming to this board need to see where things truly stand. What I post is my perception of where things stand with CCSVI, that is all.

2. I have never encouraged anyone not to have the treatment. If I have would that person please come forward. Nor have I posted anything telling people that CCSVI is bogus. If I have please site the specific post.

3. Fear???? You lost me on that one. I think it would be more scarey to meet the dude on this site who believes people should "burn in hell" for making negative staements about CCSVI.

4. I do not think you should be scared to get Zamboni's procedure. It sounds relatively safe but from what I understand there is some questions about the safety of the stent porcedure.

5. I am not telling people what to do one way or the other. I am just disagreeing that there is some huge conspiracy against CCSVI(although I know new ideas are not always readily accepted by the mainstream). For some reason, unlike any of the other message boards on ThisIsMS, SOME of the people who post here are EXTREMLY sensitive to anything remotely questioning the validity of Zamboni's research(see your two posts).

6. Your final suggestion is interesting but not quite realistic. If I could perform that trick I would charge people money to watch so I could reduce some of the debts for medical expenses I have incurred over the years!

User avatar
zap
Family Elder
Posts: 326
Joined: Mon Apr 20, 2009 2:00 pm
Contact:

Post by zap » Tue Apr 20, 2010 12:35 pm

ms society spokesperson wrote:Argument #1 - Neurologists don’t want CCSVI to be true, because then they’ll “lose business”. If MS was cured tomorrow, Neuros would still have plenty of work with Parkinsons, stroke, alzheimers etc. Even if venoplasty alleviates some of the symptoms of MS, it still remains a disease of the neurological system (brain, spinal cord).
There are many neuros who specialize entirely in MS. The most vocal opponents of CCSVI tend to be among them. There is no doubt that if a venous solution is found there would be some scrambling for those with extremely lucrative careers consisting of "managing" dozens or even hundreds of MS patients by doing brief bi-annual meaningless check-ups and MRIs and prescribing worthless immunomodulating drugs ...

Argument #2 - The pharmaceutical industry doesn’t want CCSVI to be true, because then they’ll lose business. Maybe they will lose some business, but again, MS therapies are but a very small part of their empire. Besides, guess who makes the stents and balloons for venoplasty: medical device firms that are often part of a parent company that also owns pharma cos. Everybody wins!!
If you think a one-time stent compares to the profits from daily drugs that are started at earliest diagnosis onward, well ... come on now.

http://www.visiongain.com/Report/454/Gl ... -2010-2025

User avatar
ikulo
Family Elder
Posts: 444
Joined: Tue Aug 04, 2009 2:00 pm
Location: colorado

Post by ikulo » Tue Apr 20, 2010 1:06 pm

I agree about getting proper research started, but your assumptions do have some errors in them.
msrelly wrote:
Argument #1 - Neurologists don’t want CCSVI to be true, because then they’ll “lose business”. If MS was cured tomorrow, Neuros would still have plenty of work with Parkinsons, stroke, alzheimers etc. Even if venoplasty alleviates some of the symptoms of MS, it still remains a disease of the neurological system (brain, spinal cord).
The bread and butter of many (though of course not all) neuros (including mine) is MS. It would be difficult, if not impossible, for a MS specialist who has spent 20-30 years researching MS to begin work with Parkinsons. Whether the threat of losing one's job would make one more inclined to conceal that threat is likely.
Argument #2 - The pharmaceutical industry doesn’t want CCSVI to be true, because then they’ll lose business. Maybe they will lose some business, but again, MS therapies are but a very small part of their empire. Besides, guess who makes the stents and balloons for venoplasty: medical device firms that are often part of a parent company that also owns pharma cos. Everybody wins!!
Biogen makes $3 Billion a year off MS therapies (Avonex and Tysabri). Without MS they would lost 75% of their income. (source: annual report available on Edgar). No one disputes that medical device firms would stand to make money, but that does resolve the fact that CCSVI would crush MS drug makers.
Argument #3 - Medical researchers will lose pharmaceutical funding if they choose to pursue the CCSVI avenue—Only a portion of research funds at big academic hospitals comes from big pharma. Much of the money comes from University Foundations, Cdn Institute of Health Research, philanthropic donors, government.
Biogen's annual report states: "In 2009, 2008 and 2007, our research and development costs totaled $1,283.1 million, $1,072.1 million and $925.2 million, respectively." That's $1 Billion in 2008. In contrast, The National Institute of Health spent $169 Million on MS research. (source: http://report.nih.gov/rcdc/categories/P ... 0Sclerosis).
Argument #4 - The MS Society is beholden to pharmaceutical companies and doesn’t want to anger them. In Canada, only 2% of the MS Society’s funding comes from pharma co’s, and of that funding, the pharmas may not advise the MS Society how to spend it.

Argument #5 – the MS Society doesn’t want a cure because it will put them all out of a job. Great!! That’s what we want, and that’s what the MS Society wants too. The MS Society in Canada is largely a grass-roots organization run in large part by volunteers, its not a big bureaucracy filled with highly paid execs.
I would address both of these arguments with the list of NMSS clinical advisory board members: <shortened url> They are all neuros. Cross reference with argument #1.
Argument #6 & Argument #7
I totally agree.

Lyon
Family Elder
Posts: 6061
Joined: Wed May 03, 2006 2:00 pm
Contact:

Post by Lyon » Tue Apr 20, 2010 1:13 pm

.
Last edited by Lyon on Mon Nov 21, 2011 4:20 pm, edited 1 time in total.

Post Reply
  • Similar Topics
    Replies
    Views
    Last post