Denied CCSVI table at MS Walks

[bretzke]

What if CCSVI proponents formed a human barricade that blocked the walk route?

A narrow opening in the "barricade" would allow walkers to pass. The resulting back-up would symbolize venous stenosis. It would force media, participants and event organizers to pay attention. Radical way to get the word out.

It may be time for Canadians to consider civil disobedience. You guys are really getting shafted.

Brian

[AlmostClever]

What if CCSVI proponents formed a human barricade that blocked the walk route?

A narrow opening in the "barricade" would allow walkers to pass. The resulting back-up would symbolize venous stenosis. It would force media, participants and event organizers to pay attention. Radical way to get the word out.

It may be time for Canadians to consider civil disobedience. You guys are really getting shafted.

Brian

Some of you may go to jail, but it's a sacrifice I'm willing to make!

(just joking! lol!)

[thornyrose76]

Get those lawnchairs ready!!!

[zanne10000]

Hey all!

Thanks for the great ideas-- we ARE planning something, don't worry and a lot of your ideas are already planning to be incorporated.

I'm still waiting to get the okay from the person who received the response from the National office. I'd love to post it so you can see their reasoning. Basically, it was something about only treatments (i.e. DRUGS) that have been tested in a clinical trial and peer-reviewed can have representation at the Walks.

So again, it comes down to the fact that there aren't clinical trials data available on CCSVI (at least not ones that satisfy the NMSS).

[MrSuccess]

hi Zanne10000 -

maybe it's a good idea not to post email's that were intended to be personal . If you must ..... leave out the names of those involved .

We get it . You are disappointed with the NMSS response . Many here are.

If you have been following the development of CCSVI here on TIMS ....
you can clearly see how much has been gained by TIMS members by simply researching and posting relevant material.

I like the information table idea. What's stopping you from doing this ?

I really like that human stenosis demo

Can this be done in a thoughtful respectful manner ?




Mr. Success

[zanne10000]

Mr. Success:

You stated, "maybe it's a good idea not to post email's that were intended to be personal . If you must ..... leave out the names of those involved."

I'm not sure what you're getting at-- if you go back and look at my post, I said I deleted the person's name and I even deleted the person's email address in the To/From lines I think I caught them all!). The only email address on there is mine. I obviously didn't care if mine was on there.

Regarding the thinking that this email was intended to be personal- I get that- but I also take this issue very personally (pardon the pun) and I felt it important to let people know how exploitive the NMSS is being concerning this issue. I think it's utterly ridiculous for them to call us and ask for money, yet when we want to have a table at the Walks, they can charge us a huge amount of money, then back out of it and say no, you can't do it. If I threw a million at them (were I to have that much), I wonder if they might change their tune?

So, I stand by my post and sorry if you felt it inappropriate.

As I previously also stated, we are working on some sort of presence at the Walks, even though we can't have a table.

[garyak]

What if CCSVI proponents formed a human barricade that blocked the walk route?

A narrow opening in the "barricade" would allow walkers to pass. The resulting back-up would symbolize venous stenosis. It would force media, participants and event organizers to pay attention. Radical way to get the word out.

It may be time for Canadians to consider civil disobedience. You guys are really getting shafted.

Brian

just brilliant great idea

[MrSuccess]

z- do as you wish ... I'm just offering up a suggestion ..... that no matter how frustrated you are with the NMSS ...... they need time to adjust to this new wonderful discovery ...... CCSVI .

As you might be new here at TIMS ..... I'll repeat what I think is a very important thing to remember ...... and that is ...... the most important CCSVI conversations will take place between medical professionals

This is a slow process ...... but there is no other way.

And that process is well under way.



Mr. Success

[1eye]

Respectfully disagree. Sure it matters to many people that doctors get their asses in gear and start supporting this. And insurance companies, and politicians, and writers of medical textbooks, history books, the Nobel committee, etcetera. However, the most important conversation an individual patient may have is the one where they walk past a CCSVI table, and someone tells them about treatment, and they ask where, and they find out how to get it fixed.

Or with someone who heard about CCSVI and tells them the web address that catalyzes their treatment. I saw the ALS guy who went to Mexico for stem cells on 60 minutes tonight. This venoplasty treatment is not snake oil and many pw'MS' need to find that out, so they don't lump it in with real scams. I hate to impugn anybody's motives but it seems awfully fishy that neurologists care so much that they will get on the nearest lectern and preach to people not to get even tested let alone treated, by board-certified, expert specialists. People need to know that they can get treatment now, and they are not guinea pigs made conveniently available to researchers and grad students, or fodder for fund-raisers.

Today another person came over for tea that had not seen me since "before" (last August). Unprompted, she acted very surprised at the shape I was in. I walked a bit in my living room. She very sincerely complimented my by-ear piano playing. According to her (and I don't agree myself) I will be walking in a couple of years.

Cheerleader, if you are reading this, does Jeff have any recordings we could seek out, from 'post procedure?' That would eloquently say a lot.

Since my treatment I have been seeing a professional for help with anger management. 'MS' may have done a lot of things to me, but it never made me this mad. Canadians are said to have long fuses. Well our trusty Prime George Bush-Wannabe Minister Steven Harper broke open his election campaign during the Academy awards tonight, with an attack ad calling Michael Ignatieff un-Canadian. I was born in Detroit in an educator's family during the McCarthy era and I've seen that song-and-dance before. I've been here since I was 3 and a citizen since I reached draft age. The ruling party in this land is about to get the shock of their lives when a lot of 'MS' people and their friends, family, and associates give them democratic hell. The long fuse is not infinite. It's burning very short these days.

[MrSuccess]

hi 1eye - your blunt honesty is refreshing . Yes ..... the slow forward advance of CCSVI research ... is certainly frustrating .

First off .... I am not a shill for any MS Society . But .... please take note they [ the NMSS ] have published on their web-page .....
information that they will gather and produce results from their CCSVI investigative studies .....every 6 months

I think this is very good ..... in fact ..... tremendous .

As per doctors .... as only a short time ago there were none .....
we now read of many '' First Annual '' doctor conferences on CCSVI.

That is a stunning ..... and I say ...... dramatic leap forward for CCSVI research .

Insurance Company's : Bet the Farm ..... they are monitoring this more closely than you can imagine . As of now ..... they pay for the MS drugs .
What they fear ..... is paying for CCSVI treatment and for MS drugs ...... in effect .... doubling their MS costs .

When and IF ...... CCSVI eliminates the need for MS drugs ..... the Insurance Industry will jump in with both legs to support CCSVI .

In fact ..... they will demand pwMS undergo CCSVI treatment .... as it will be the lower cost to them . This is logical. Money talks.

Big Pharma and those making $$$$ on MS drugs :

I have no solution . The BIG question for them .... is how do we keep our bottom line ? CCSVI is keeping them awake at night .
Think I'm dreaming that ? Welcome to the real world kid's .
Again ..... money talks.

All things considered ...... everything will take it's Natural order.

For now ..... it has to be .... Doctor to Doctor to Doctor .................




Mr. Success

[bluesky63]

1eye, you have reached my heart. I am reading this thread with, as usual for me, sympathy for every point of view. I am friendly with my local MS society people and I know they mean well. And I am trying so hard to see their SLOOOOOOOW point of view, as Mr Success explains it. And yet, as a person who has actually experienced what a vital difference -- what even a seemingly small difference -- can make in a life, in a month, in a week, I --who am known for my patience and calm, for my rationality -- feel like exploding that these people seem to be so patronizing about what we believe -- we, the actual people with MS, we the actual people who raise the money that pays their salaries, we the actual people without whom their entire organization would not exist -- we come in to the office and they listen as though we simply don't "get it" and then turn around and explain to us, as though we needed correcting, what we must accept, instead of seeing us as vital consultants.

I know people personally who are slowly dying while this happens. My children's lives have gone by while this happens. If they had any idea how much it mattered, if it happened to them, if they lived ONE WEEK in my life or your life or some of the other people I know, they would feel our urgency.

I don't want another life-threatening drug that makes me feel too sick to be present for my children. I don't want a sandwich and a brochure while I listen to a condescending doctor. I don't want to tell my family and friends to donate to this big machine without our desires being taken seriously. Where is the mechanism for that?

I want to be awake and alive. And now I know firsthand it is not just a dream -- it is real, and they are in a position of power, and there is a whole structure of people, communication, and money to enable it.

If they had a mandate that 51 percent of their staff needed to have MS, instead of just being nonprofit employees -- the way that disability organizations mandate that 51 percent needs to be people with disabilities -- it might be different. "Nothing about us without us."

Rant over. Must have breakfast . . .

[AlmostClever]

If they had a mandate that 51 percent of their staff needed to have MS, instead of just being nonprofit employees -- the way that disability organizations mandate that 51 percent needs to be people with disabilities -- it might be different. "Nothing about us without us."

That is a great idea, Bluesky!

[bluesky63]

I think it's quite different than just having advisory board members who have an interest in MS.

OK, I also want to add to my previous comments now that I have had some soothing yogurt.

I absolutely appreciate all the great advocacy and benefits of the MS society. I think many of the people who work there are sincere, passionate people who care and who believe they are our best partners. But the whole MS society and MS medical treatment machine is kind of like a giant megaton train driving down the autoimmune track, and now here are people calling out to the drivers, change tracks! Quickly! But the drivers just can't maneuver this giant weighty train so easily, especially since no one is trained for any other machine.

Mr. Success, from what I have observed, some people get information from the internet and from other people who have MS. But for many, many people, the main source of information about MS and about how to manage it comes from their doctor and from the MS society. So if they never hear alternative ideas, they never have the chance to research anything independently.

To be completely blunt, if we wait for only doctor to doctor, I know people who will be dead! And if I had waited for doctor to doctor, I sincerely believe I would be one full EDSS point lower or worse this winter.

I had an appointment with Dr. Dake for the end of December 2009. I was at 7 EDSS. It was cancelled. That winter I went down to 8 EDSS. I had a procedure elsewhere summer 2010. I went back to 7. There are also issues that cannot be captured by EDSS. I am grateful beyond words.

I love life, and I want to be in it!

[bruce123]

what about hosting CCSVI walks and charging $3000 for the MS society and big pharma to set up booths :S

I think this is the point. It is not a CCSVI walk so if you want to set up a table you have to pay like everyone else. Tables are a great opportunity for companies or groups to access a captive audience. If the MSS let someone have a free table for CCSVI then there would be 10 acupuncturist who would demand a free table (nothing against acupuncture). Charging for a table just makes sense.

Of course any CCSVI information would have to be careful not to say anything bad about the MSS and it would have to stick to the treatment for CCSVI and not MS since the link has not been proven, regardless of how much we believe it.

Then again, if it turns out to be true that there is an MSS policy against a table promoting treatment for CCSVI, then maybe a protest is in order.

Bruce

[AlmostClever]

Bruce,

Good point.

Therein lies the problem: The BUSINESS of MS is BUSINESS!

Gotta pay to play.