This Is MS Multiple Sclerosis Community: Knowledge & Support

The latest refinements of science are linked with the cruelties of the stone age....

This is one of those cases in which the imagination (DR Freeman) is baffled by the FACTS


Silverbirch

First of all, I cannot tell you how much I have come to appreciate this board and the community it represents. I have done a lot of independent research and tried to serve as my own advocate, because unfortunately I did not find one in the medical community willing to do so.

I don't doubt for a second that this is about money. Prestige. Think of it- neuros who built a career on a theory are about to have their recurring revenue slashed by a simple procedure. Pharmas are about to lose billions in recurring revenue in the same manner. It's daunting.

And of course, the MS Society has no reason to exist without the disease.

So yes, there are a lot of things working against the promotion of CCSVI. Additionally, we are a relatively small community in comparison to other diseases, such as cancer or diabetes, so we actually lose out in media coverage. In fact, I have not seen one mainstream US media outlet speak to CCSVI, but they have all dedicated a ton of time to ways you can save on your family vacation this year. Sad.

I will say, however, that I have seen miracles from this community, particular the one on this board, because we communicate to each other. We support each other and we share information. We are using social media, demonstrations and one-on-one information sharing to get the word out. I have personally told dozens of people and are amazed that they had heard nothing about it before- even when they are MSers themselves.

Our ability to counter the impending attack is to head it off and head it off large. I am talking BIG.

In my professional life, I work in sales. I am very good at it; more importantly, I am very organized and good at getting attention. I noticed HappyPoet's eloquence, Johnson's directness and Cheerleader's attention to detail, just to name a few. I think we have the makings as a community to really change things.

The MS Society has a voice. We need a society, set up as a non-profit, that can solicit media responses to articles such as these, hold press conferences, gain celebrity support. Look at what the Tea Party did for themselves- it isn't that hard if you have the talent and the will to get it started.

If there is interest, I will happily do the legwork to see what it would take to get one underway. Ideally, none of us involved in the non-profit would take a salary for our work- that would ensure that potential donors understood that THIS society was made of patients, for patients, and for the elimination of this disease and the advocacy of this treatment.

Any thoughts?

Hi BooBear,

Many of us "old timers" on TIMS thought the same thing last year and we formed the CCSVI Alliance. It was incorporated in February, is awaiting nonprofit status but we can legally accept donations, and our site ccsvi.org, is being built. Our welcome letter is up.

There's a thread about it here:
http://www.thisisms.com/ftopicp-108408- ... nce#108408

You can volunteer to help. Send an email to info@ccsvi.org. I'm in sales too, and being methodical and enthusiastic goes a very long way.

Michelle

Thank you! I am happy to volunteer and will reach out accordingly.

This is wonderful!

Lets email mssociety (tinfo@mssociety.ca) to fire him to take away his voting advantage due to conflict of interest.

If someone is doing unbiased research, how can they say what would be the outcome (thats what Freedman is saying). Khan also said that several articles are underway that prove CCSVI incorrect. Either these guys are incompetent or desperation is clouding their thinking ability to make such mistakes ...

May 13, 2010

Dr. Freedman, if you take him at his word, expects a CCSVI study (probably to report before the end of the year), that will disprove what Dr. Zamboni is saying. He will try. but I have no doubt that under the scrutiny of his peers (plus *us* rabble), he will fail. Then maybe television and newspapers and magazines might stop quoting him, and giving his opinions an airing on radio and TV. You people that insult him and call him names, if you don't criticize any of his published work, what have you got, besides hot air? Attacks only make people very defensive. That defensive stance ends up being very counter-productive, no matter what he might have said. It ain't worth the paper it's printed on. Has his appearance on CTV or CBC radio been peer-reviewed?

I'm not saying no one should express displeasure. Sure they should. But there are enforcers on this forum. They could perhaps filter ad-hominem, slippery slope and other fallibilities, plus angry name-calling, by restricting them to one topic. Not this one, but a more general one.

Anyway, if you are very confident, Paulo Z. should be easily vindicated by real science, which now cannot rest until CCSVI/'MS' is proven by many peers. Some would argue that it already has been.

However, following Dr. Freedman's logic, we must prove there is no doubt. Well, after a while, that gets too expensive. I think the best thing Paulo Zamboni could do is to quantify and clarify the content of his teachings in diagnosis and testing for CCSVI. Dr. MacDonald claims that because he himself went to Italy and learned from Zamboni, the difference between how he did it before and after, is like day and night.

It cannot be rocket science, but might be better than the job done by a person who is forbidden, by their professional organization, and by lawyers, to do any more testing of CCSVI, and would rather be home watching a game. So quantify it, describe its diagnosis and treatment in a formal procedural description, and let that be the gold standard for diagnosis and treatment of all CCSVI, whether it has an association with MS or not.

The data are likely to be much more consistent between testers. He has to make this disease process's existence as unassailable as auto-immunity was. That means, unfortunately, he'll have to give all his trade secrets (if any) away, at least as far as CCSVI is concerned. It would allow others to know how to diagnose and treat without going to Ferrara. Same with any modifications to Doppler machines, etcetera. If this stuff is to become science-standard knowledge, it must all be transparent. If it requires that he or Dr. MacDonald or someone write a book, well somebody's gotta do it. Maybe some enterprising student of his should do it before the opponents of this treatment do.

I think they exist, that they are very powerful, and blatant in their opposition. "If all patients are given the therapy, no one will go in a trial." This statement was made as testimony before a Parliamentary committee, by an 'MS' Society spokesman. Well that in itself can be reworded to say that (however unfortunate it may be for the industrial base around CCSVI/'MS') these people would all be, for other intents and purposes, CURED! While that is obviously not true (it may be a while before all vein haemodynamics, iron deposits, scarring and autoimmunity are fully elucidated), it sounds good to *me*.

Lets all get treated, and deprive science of one of it's favorite mysteries. We'll be like the dinosaurs; no one will ever know how they died. Nor will it be very important for average people to know, so if we find new evidence, we can always change our minds any time. In the end, it will probably be funded indefinitely. Just not by bike rides or walks.

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

1eye

Very well said xxx

How many times Ive written bad things to post and then deleted it.

A bit of eitiquette .

Silverbirch

jug, this goes waaaay back to the first post and i am not entering the debate in any way here, just wanted to say that without reading the article, just your freedman excerpt, it looks to me like he might be talking null hypotheses and power/certainty.. stats stuff. i could be wrong. but it's what i have to do with my data in this one thing i'm working on.

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Jimmy--you are absolutely right about null hypothesis, (and come on in any time.) As a moderator and level-headed elder, you are always appreciated. You're right about the stats...if there was just one CCSVI paper, Freedman would be too. The problem is, there's been much more correlation going on, and much more research. It's not just one paper and one guy's hypothesis any longer. Freedman is mis-characterizing the research. Whether he knows about the additional research or not--the neuros seem to be using the "lone, crazy researcher with one paper" angle to mischaracterize the stats.

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

I always get angry when I read "Zamboni and his staff". First, it's Dr. Zamboni. And Dr. Salvi, Dr. Galeotti and others aren't just his staff. Let alone Dr. Zivadinov, Dr. Weinstock-Guttman and many many others. They are well trained experts and researchers, too. Or am I getting the word staff wrong?

_________________
"There is only one good, knowledge, and one evil, ignorance." Socrates

Has anybody seen today's Dr Who episode, "Amy's choice"?

Dream 1:
Zamboni is a charlatan, his theory is trash, MS is autoimmune. Dr Freedman saves the world from this quacker!

Dream 2:
20 people where I live have found severe flow problem in the neck. I have had 3 stenoses that shouldn't be there according to Dr Freedman, so have the other 20. A huge definite 100% so far here. Why did we all have flow problems and stenoses? Ah, I forgot. My radiologist is looking the veins of people without MS visiting him for carotid arteries' triplex, just in case somebody has flow problems in their IJVs. Guess what: 0%. None so far and he has checked more than 30. But, of course! Coincidence! What is more common than throwing 10 dice 20 times and all of them roll a 5?

Dr Freedman, which of these 2 dreams is the reality?

I used to feel a little bad that some scientists could lose their jobs because of the end of MS, but having "scientists" abusing science and patients the way Dr Freedman does makes me feel no sorry at all.

Finally, just a note about why we may be finding 100% here:
Greece and Italy are so close geografically and historically. It is said that Greeks and Italians are "Una faca, una raca" (trans. one face, one race) genetically the exact same race, living together since the pre-imperial Roman era.

sou

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Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

I just listened to Marky Baby on the radio again. I am not just mad at him. But you've got to start somewhere. I am tired of all the self-serving pretense at concern for us 'MS' victims. You are all right. Call him all the names you want. This foot-dragging has got to stop.

I am now on a hunger strike. I will be on it until both sides of our border have diagnosis and treatment available regardless of pre-existing conditions, for CCSVI. By the same means as the rest of the health-care system. Insurance, or pay-it-yourself.

On hunger strike now. May 15, 2010 9:22 PM

A former 'Dr. F.' patient who is no longer patient

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

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

In Dr. Sclafani's thread It is interesting to hear a "proponent of the scientific method" to present the BNAC stats as "50% CCSVI in pwMS and 1/3 (33.3%) in HC". Very scientific indeed.