Denied CCSVI table at MS Walks

[zanne10000]

Hi all:

I wanted to share a disturbing development from our corner of the country. I contacted our local chapter office at the beginning of the month to inquire about having a CCSVI table at the MS Walk. I was told it would be okay, but like any MS drug company, it would cost $3000 (laughing hard now) to have it at the start area and $1500 (laughing not as much, since it's not as expensive, lol) at the 2 mile turn around park area.

I wrote back, that I was a private citizen with MS, not a deep-pockets drug company and there was no way I could afford $1500, let alone $3000 to disseminate info that they should be providing for their clients! I was told that they have set these amounts to keep their overhead at a certain amount, blah blah blah.

I wrote back that I was very disappointed since this was going to be my 5th MS Walk and my 2nd year doing the MS Bike ride and left it at that.

There's more to this story, but I'm waiting for the okay to post that part-- suffice it to say that now THE WORD has come down from on high (National office) that no CCSVI tables will be allowed at all!

If anyone would like to see my verbatim email exhange with the local chapter, let me know, and I'll post it.

Pretty lame. The NMSS is "sponsoring research" that will take two years, but in the mean time, they sure as hell don't want anyone to learn about CCSVI!

[Cece]

yes, please post.

There is a difference between a drug table and an alternative treatment table when promoting the alternative treatment does not profit you personally.

[leetz]

but I must say....NOT SUPRISED IN THE LEAST!

[bluesky63]

I would be wondering if the fee applies to anyone who has a table, no matter what the message, whether a company or an individual. I would be interested in learning about the history of how this has been treated. This would help understand if anything is being singled out.

[zanne10000]

Sorry for the formatting issues! I deleted the NMSS person's name (don't know why I feel like I need to protect them!)

You'll need to start reading at the bottom of my post and work your way up!
_____________________
Suzanne,
Thank you so much for participating in both our Walk MS and Bike MS events. Your dedication (5 years) is impressive!

To answer your question - our sponsorship guidelines were established to provide a variety of community sponsors the opportunity to support the underwriting costs we incur to put on such a great event. These guidelines have allowed our Chapter to maintain a very low fundraising ratio of 18%, which means that every dollar raised by a walker goes that much further to fund research, programs and services. At this time, we are not able to extend a discount on a community sponsorship as I'm sure that you can understand that if we do for one, we must do for all the sponsors that have already pledged their contribution.

The Society has a dedicated web page for CCSVI with regularly updated information. Just last week, a 6 month report on the CCSVI research we're funding has been posted to this page. Traditionally, reports of this nature are released on an annual basis, so you can see that the Society is taking a very serious stance on the issue by disseminating information as fast and ethically as possible.

Thank you again for your interest in community sponsorship. We hope to see you at the Walk and please do visit our Chapter website (www.msnorthwest.org) for regularly updated information on programs and teleconferences that include research updates on CCSVI.

Thank you,
(name deleted by me)
___________________________________
From: Suzanne Perkins [mailto:zanne10000@yahoo.com]
Sent: Monday, February 07, 2011 9:47 AM
To:
Cc:
Subject: RE: Table re: CCSVI at Seattle MS Walk

Hi xxxxxxx:
Thank you for your response. As a private citizen with MS (not a deep-pockets drug company!), is there any way the MS Society could cut me a break? I can't afford to pay even $1500 out of my own pocket to disseminate information which the MS Society should be doing anyway. I really think it's important for the MS Society to take a stronger stance on this. I know that you're doing the research studies, but in the meantime, I'm sure you're aware that thousands of people have already been tested and treated for this with amazing results.

This will be the fifth year I'm participating in the MS Walk and the second year to do the MS Bike. Last year, I raised a lot of money for the Society. I really think it would behoove the Society to make an exception in this case.

Thank you for your consideration,
Suzanne


--- On Sun, 2/6/11, xxxxxxx wrote:

From:
Subject: RE: Table re: CCSVI at Seattle MS Walk
To: "Suzanne Perkins" <zanne10000@yahoo.com>
Date: Sunday, February 6, 2011, 9:52 PM

Hi Suzanne,
I’m sorry for not getting back to you sooner- our email was out almost all of Friday. Thank you for sending your question my way.

Yes, you would be welcome to have a CCSVI booth at the Walk. Just the same as the MS drug companies that are at the Walk and provide information on their products/treatments you would be in a sponsor booth. Booth spaces at the Seattle Walk MS are $3,000 inside the stadium or $1,500 for a booth at Gas Works Park . If you were interested in being at more than one Walk site, then it is often a better deal to come on as Pioneer Sponsor, which is at the $5,000 level but lets you be at the two sites of your choice. Our non-metro area walks are $1,000 each for booth space. I know this might not be exactly what you were thinking of, so please do let me know if you have any questions.

I am out of the office with jury duty tomorrow and possibly Tuesday but I will be checking my email throughout and will respond to your emails as quickly as I can.

Thank you,

(name deleted by me)
________________________
From: Suzanne Perkins [mailto:zanne10000@yahoo.com]
Sent: Friday, February 04, 2011 1:02 PM
To:
Subject: Table re: CCSVI at Seattle MS Walk

Hi xxxxxx:
I had posted on the FB page that I'd like to see a table at the Seattle MS Walk with information about CCSVI. I know the MS Society's stance on this, but I don't think it's right to deny people the opportunity to learn more about this, esp. when this might be their only chance.

Would this even be "allowed" and if so, what would it take to make it happen?

Thank you,
Suzanne

[thornyrose76]

Take a lawn chair, plunk it down at the finish line, have a seat and hold a sign up that says in big bold lettering CCSVI! What are they gonna do arrest you ? (It would probably be worth it!)

[thornyrose76]

...free too!

[AlmostClever]

Maybe Ms. NMSS had just come off a long string of requests from people wanting to do snake oil and bee sting therapy tables and she'd just had enough?

I think it'd be neat if Pacific Interventionalists or Passport Medical ponied up the moolah for a table at a NMSS walk or ride.

Do you think the NMSS would actually let them have a table?

[Ruthless67]

Here's my long winded 5 cents worth.

National Multiple Sclerosis Society Greater Northwest Chapter

The sixth annual continuing medical conference, MS Care: Therapies, Trends and Treatments, will be held on Saturday, May 14, 2011 at the Pan Pacific Hotel in Seattle, WA. This is the premiere MS-focused conference in the region, attracting an audience of neurologists, physiatrists and nurse practitioners involved in the search for answers to the complex questions of multiple sclerosis.

Does anyone know how to get a list of the speakers and the Title of their topics?

National Multiple Sclerosis Society Greater Northwest Chapter

Keynote speaker: Dean M. Wingerchuk, MD (Mayo Clinic, Arizona)
This year we are excited to welcome recognized MS experts presenting on topics including risk and benefit assessment of MS therapies, managing relapses, managing fatigue, oral MS therapies, stem cell research and medical marijuana. In addition, participants are invited to submit cases for panel discussion during the program.
Our ultimate goal in educating and partnering with healthcare professionals is to enhance the access and quality of care available to people living with MS.

I’m just curious to know if CCSVI is a topic? If it is, how is it being presented? Is it presented to include both the risk and benefit assessment of this procedure? Is the delivery of the information presented in an impartial way?

If CCSVI is not a topic, then the question is, Why Not? I mean, come on, especially when you read that medical marijuana is one of the topics to be discussed.

National Multiple Sclerosis Society Greater Northwest Chapter

Just last week, a 6 month report on the CCSVI research we're funding has been posted to this page (Nat‘l MS Soc of Greater Northwest Chapter). Traditionally, reports of this nature are released on an annual basis, so you can see that the Society is taking a very serious stance on the issue by disseminating information as fast and ethically as possible.

What part of ethical (principled , fair, moral) is it when all areas of current MS related research is not openly debated in a forum such as The Sixth Annual Continuing Medical Conference, MS Care: Therapies, Trends and Treatments?

And as for "disseminating information as fast " "as possible"; I have been following the CCSVI research for 2 years now but the research has been going on longer than that. So why hasn't the NMS Society been disseminating any CCSVI information until now?

So on a personal level. As a person diagnosed with Multiple Sclerosis I want to read, hear and watch media on all current MS research.

One of the first things that Dr. Zamboni said of CCSVI was to implore others to go forward and Research, Research, Research his findings. So that’s what I want RESEARCH, RESEARCH, and still more RESEARCH.

[thornyrose76]

Maybe Ms. NMSS had just come off a long string of requests from people wanting to do snake oil and bee sting therapy tables and she'd just had enough?

I think it'd be neat if Pacific Interventionalists or Passport Medical ponied up the moolah for a table at a NMSS walk or ride.

Do you think the NMSS would actually let them have a table?

Gosh, you never know!

[blossom]

i might be missing something here but i doubt that any of the so called snake oil treatments have treated near the amount of people that have been treated for ccsvi and many more are awaiting treatment. and, i doubt that snake oil is becoming available in as many well known hospitals as ccsvi is nor would snake oil be being researched and treated by the reputable doctors ccsvi is recruiting.

seems to me the ones that have been and still are peddling snake oil are the drug co.'s. their snake oil has been pretty profitable for them and their associates. but, has there honestly been any real gain for us the victims? the drug co's dig into their little chump change to pay for a booth or table. us, the victims who are supposed to have a voice through the ms society don''t have that kind of money and even though "ccsvi has went from a spark to a forest fire" the ms society still is playing dead to this.

disgusting. yep, i'd do as cece said. i'd take the lawn chair, but i'd jazz it up and get the info. out as much as possible. can you get a big helium balloon with ccsvi research needed on it? or something in that order.

if they give you any crap----have your attorney on speed dial.

got a bull horn? i'm guessing you are in usa. they say we have free speech here. --- speed dial---attorney!!

but, be a lady, we're kinda being treated like the hippies in the late sixties.
they are trying to write us off as radicle, uneducated trouble makers. bet they think some of us have a doobee or a brownie now and then. hell we couldn't possibly have good sence.----------------WRONG!!!!!!!!!!!!!!!!!!!!!!!

[blossom]

oops, thornyrose thought of the lawnchair. sorry. my mistake. i do like the comfy lawnchair idea.

[Cece]

National Multiple Sclerosis Society Greater Northwest Chapter

Just last week, a 6 month report on the CCSVI research we're funding has been posted to this page (Nat‘l MS Soc of Greater Northwest Chapter). Traditionally, reports of this nature are released on an annual basis, so you can see that the Society is taking a very serious stance on the issue by disseminating information as fast and ethically as possible.

What part of ethical (principled , fair, moral) is it when all areas of current MS related research is not openly debated in a forum such as The Sixth Annual Continuing Medical Conference, MS Care: Therapies, Trends and Treatments?

When the MS Society mentions ethical, I believe we are the ones being branded as unethical for misleading vulnerable people into expensive worthless surgical procedures.

I disagree entirely with that point of view, but I think it is the point of view that they have had.

I am very curious about the word coming down from the NMSS that no CCSVI tables would be allowed. I also hope that CCSVI research continues to siphon off money that would've been donated to the MS Society. It is a disgrace that after all these years and all this money the answer that is CCSVI did not come from them nor was it well received by them.

[NotFound]

I second (third, forth) the lawn chair idea!

Also, have somebody nearby with a camcorder, not necessarily a professional, but you know, YouTube is at times more popular than CBS news

[jimmylegs]

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