This Is MS Multiple Sclerosis Community: Knowledge & Support

Joan, I don't feel duped, I was duped.

Sure, it's not about marketing for those directly affected but there's hell of a lot of shady marketing going on in the name of CCSVI. I hope down the line your efforts wont be crapped on by some who're fighting your corner, but I doubt it.

They tend to call themselves serial entrpreneurs and consultants nowadays, the type that fly with the wind if there a buck in it for them.

I hope CCSVI eventually proves a winner for everyone (patients), I've just found too many red flags in the Pro-ccsvi camp to feel confident this will be anything more than another society party.

It breaks my heart that my sisters biggest fear is not being able to get out of her bed one morning, with her young kids fending for themselves.

Im not one of your "Colin Rose" skeptics, it's just because we seem to have a lions share of professional idiots in the UK, but were only emulating USA's healthcare system, and getting there fast. It looks as though the wrong kind have already firmly planted their feet under the table & it's been that way for a while.

Susan's brother (since we are apparently on a first name basis)
This is your site, right?
http://www.multiplesclerosissurgery.com/contact-us.html
I'm not sure who you are angry at, or why. Also not sure who duped you.

I'm quite happy with my husband's health care in the US, I enjoy working with the doctors involved, and I am sorry that it is frustrating for you in the UK.

Also, why do you allow google ads (Essential Care and Pacific Interventionalists, etc.) on your site if you are not selling something?
confused,
cheer

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

Doesn't this site have similar ads?

What is it selling?

This is under google ads on the TIMS page---



My point is, this long rant by veebee against "selling CCSVI" is odd, since he is selling ad space on his site advertising CCSVI treatment.

Accepting google ads is a way to make money off of getting "hits" on your site. Calling your site MultipleSclerosisSurgery is a sure way to get traffic. Just seems off-

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

PM Sent Joan,

Your slightly off

The ads maintain the site. The ads are external advertizers and appear based on contents relevancy (ie google ads). I've refused several advertising deals because I thought the were inappropriate.

I dont sell links because I link out based on relevancy.

I don't collect email addresses which is a big telling sign of an online marketer.

The ads are based off centre because I didnt want them in the way. The money is usually a 250x300 slapped front ontop of content. It's far from a commercial site.

I've not taken a penny from it but If I did I wouldn't be ashamed to admit it. I don't monotize key pages. I will update at a later and tidy the site up at a later date but just cant face the crap im witnessing within CCSVI.

MultipleSclerosisSurgery.com was the first name that came to mind. Non industry people still consider this a surgical procedure. If nothing else, I now know how to spell MS. I picked up a recognisable domain. No pre-planning, it was based on what I would type in.

My CCSVI interest isn't for me. It doesn't help my health problem, it throws me to the wolves in other respects. I've no angle other than seeing my Sis on the mend. That angle wont change.

Im opposed to shady marketing, not marketing in general and I'm concerned my sis will suffer as a result.

Joan, you post some superb work but spotting dodgy marketers doesn't seem to be you're forte

"These ads help pay for the upkeep of our site. They are automatically served by Google and are not affiliated with This is MS."

Same applies. That was written into the template by the forum, they have a reason for claiming impartiality due to the nature of the forum.

Nothing to hide down that road and I'll freely answer any concerns.

i had the procedure. for me it didn't work. am i unhappy about it? sure i am. do i wish i would have been more aware that clots etc. could come into play? sure i do. do i wish i could have had it done in my own home town and follow up care would be there? sure i do.

am i sorry i had it done? i flip both ways on that. the state my body is in could i have waited? then i would not have known. have i gotten worse? yes i have. would i have been getting worse anyway? real good chance.
did it seem a good idea at the time? yes it did. am i sorry? sometimes.

if i was newly diagnosed would i have done it? no way. do i feel there is a lot of work to be done to get it right? i sure do. do i feel ccsvi has something to do with ms? i certainly do. do i think it is the answer for all of us? i'm proof it's not, at least at this time.

do i feel ccsvi should never have been brought to light and spread like wildfire? absolutely grateful it was for many many reasons. why do i feel this way? it got the way of looking at ms on a whole new path. just look at what it is doing. there are some of us able to get to Spain seeking ctos. some are getting chiro. help and many people have been helped when liberated. this is not putting ccsvi down. it got people looking at the whole picture. and it really is proof to me that there are many of us that have symptoms and they call it ms. ironically, this all has to do with the blood flow in many of us. ccsvi, "a cure all"? not hardly, but it is the start to for once something that has "real promise" and hope.

as far as a marketing conspiracy??? i don't know what the hell planet people are coming from with this. sure we live in a money making world. they gotta pay the light bill just like me. will there be some that take advantage? probably. hasn't there always been? sure, but that's what ccsvi alliance and other good folks are trying to keep from happening by doing the best possible to get this up and running right and the research and everything necessary so this will be very unlikely and people can get these treatments that i'm sure ccsvi research is going to bring to light even more so that people don't have to travel all over God's creation to get treated.

WITH ALL MY QUESTIONS I HAVE NEVER HAD THE THOUGHT EVEN ONCE, THAT SOMEONE LIKE DR. ZAMBONNI "WIFE WITH MS" DR. HUBBARD "SON WITH MS" CHEERLEADER "HUSBAND WITH MS" OR A DR. LIKE DR. SCLAFANI "READY TO RETIRE" DR. HAACKE "RESEARCHER" DR. DAKE "WILLING TO TAKE THE FIRST PLUNGE" AND MANY MORE. THIS IS SICK TO IMPLY IT TO BE A MARKETING MONEY MAKEING SCHEME. "THESE PEOPLE ARE NOT GOING TO TAKE THEIR LOVED ONES TO THE SLAUGHTER LIKE LAMBS. "

it would take many many yrs. of dr.'s doing ccsvi to make a pinch of the kind of money made by drug co.'s on one of their so far useless drugs. check out their marketing skills. open up your ms magazines for openers. and, talk about taking advantage of desparate people. a lot of people with very schrewed marketing skills and lot of power and money are spending every day more money to sell them than all the ccsvi procedures done so far.

what's it gonna be next? how about the chiro's like dr. flanagan that are already helping some of us with so called ms or the dr. in Spain that is also treating some that have symptoms called ms. what marketing underhanded trick scheme will they be accused of by some? what are they marketing besides their yrs. of training and skill and dedication to wanting to help people? none of these involve buying bottles and bottles or shot after shot at a drug store for the rest of you life where once they get their hooks in you the money keeps rolling in. their help comes from their training and the skill of their hands just like all the dr.'s involved in ccsvi. WHEN I WAS IN BUSINESS THIS WAS MY THOUGHT---YOU CAN ONLY MAKE A CERTAIN AMOUNT OF MONEY WITH DOING LABOR "IN THIS CASE SURGEON, IR, OR CHIROPRACTOR."---BUT THERE IS NO LID ON HOW MUCH MONEY YOU CAN MAKE BY SELLING A PRODUCT "IN THIS CASE DRUG CO.'S AND THE DR.'S THAT CHOOSE TO PUSH THEIR PRODUCT." -- SO, COMMON SENCE TELLS ME THAT THERE IS NO BIG CONSPIRACY GOING ON WHEN IT COMES TO CCSVI OR THE THINGS COMING TO LIGHT MORE DUE TO CCSVI!!

this is only a discussion--i remain--calm-cool--and collected. stress is bad for us!

Blossom, Zamboni & Hubbard are not marketers.

For the record, medical spam ranks up there with pornography.

I agree, CCSVI in no way started as a marketing gimic but that didnt last long when private concerns got a sniff. You'll always get the decent ones mingled in with the dead weights, that's how Tysabri, etc get their foothold.

For MS Society haters, there's more decent people around than ponces but the ponces appear to make the decisions that affect patient health.

"Conspiracy" is a buzz word. It doesn't account for actions that mimic a conspiracy. The medical profession is way beyond conspiracy, US healthcare is evidence of that, and proof money is a huge motivator.

It get's fishier by the day but the generic answer is always "haha look we have a conspiracy buff here"

This is probably one of the more dangerous info sites online:

http://www.quackwatch.com/

When the industry talk with forked tongues, it's perfectly natural to question intent. I dont consider the profession responsible enough to "do the right thing".

The sad fact is that patients are easy targets. They're exploited on a daily basis, again this is well documented. Charity? the same.

It's easy to pick out the good ones but it's the nasty buggers Im more concerned about. We have a minority of people abusing their position of authority, again well documented.

Zamboni did a very brave thing re-highlighting a problem with the vascular system. I've never had a problem with anything thats been written by Joan. Yes, Im concerned with the UK situation because some have given me good reason to doubt.

I'm surprised I'm not fully supportive of some but In my world I put the patient first. Im not sure what planet some of these scientists live on but it's not planet earth.

Blossom, I too shift back and forth with CCSVI but the blood flow belief remains, and if they can clear the problem, they can write their own cheques as far as Im concerned.

I truly hope we're on the same side but with crossed wires. Different experiencesl bring us to different conclusions. I hope to hell my instict is wrong for everyones sake.

Veronica,
it seems to me that you are part of the marketing problem you continue to describe. Perhaps this is inadvertent.
You said you build blogs and websites for a living, and created yours in January of this year.
You picked a name and keywords that get the top ranking on Google when anyone in the world types in "multiple sclerosis" CCSVI and surgery.
You are using Google Adsense.
google AdSense
Google pays for clicks on ads and the site, it also pays based on length of content.

It is very easy to get info using WhoIs.domaintools.com

For research-based content, no ads, and a registered 501 c3 non for profit, please visit--
www.ccsvi.org
cheer

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

Wow !!!!!

I'm not an overly religious person, but Thank the Lord for for people like blossom (your ask all the right questions, give all the right answers despite being an MS'er ) and cheerleader (your work can never be thanked enough).

That's all I wanted to say.

Is this thrue? Non for profit? No ads?

I dont think so.

You and your "Board of Directors" just found, as you say "Innovative Ways to Give":

"Raise Money for CCSVI Alliance when you Search or Shop online!"

"Raise a penny (or more!) for CCSVI Alliance every time you search the web. ************.com is a search engine powered by *****.com, the internet's first online shopping mall where a portion of each purchase is donated to your favorite cause. Over 700 of the web’s best stores participate in this free program, and up to 26% of each purchase benefits your cause!"

And treatment indirect ads/links are all over the site...

Q: why one of yours Vice Presidents "... owns about 430 other domains" ?
http://whois.domaintools.com/ccsvi.org

That's a reverse whois on a fairly common name. It is not telling us that this person is a unique individual. Just that 650 domains are owned by someone with this name. Possibly/probably 650 different people.

Isn't that what it is saying?

That's correct, L...the name of our vice president is fairly common. There are many other people with her name. She registered one domain site CCSVI Alliance. www.ccsvi.org We sell no ads on the site.

To get a 501 c3 non-profit charity status from the US government, there are many rigorous standards. None of the volunteers who work on our site draw a salary. The monies raised go to outreach and research.
http://www.irs.gov/charities/charitable ... 99,00.html

I hope people might see the difference between an official group which is organized and incorporated to encourage research and further inquiries into CCSVI, as opposed to a website written by a web designer to generated hits.

cheer

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

I am Michelle Brown, my gynecologist is Michelle Brown and my daughter has a friend named Michelle Brown, all within 2 miles of eachother. When my car breaks down and I call the 800 service #, there are 10 Michelle Browns with the same brand car in my county.

When I knew I wanted to form a nonprofit related to CCSVI in October of 2009, ccsvi.org was owned by a man in Ohio who registered it in Sept. 09. He owned hundreds of urls with the intent of selling them. I was very lucky that he believed me when I told him I had ms and was starting a nonprofit and what could I do to get his url. He very generously gave it to me. It was a priceless gift to the ccsvi community.

CCSVI.org has been funded by the most part by the board members. We've put in money and lots of sweat equity and we have jobs, families, and MS or loved ones with MS.

The "crumbs" we will get from Igive and Goodshop are a tiny fraction of what we needed to incorporate, be insured, build a website and keep it updated and running. Our overhead is minimal. The way we get donations from Igive and Goodshop/search is when people register to have the online retailers they buy from donate a percent of their purchase to the charity of the buyers' choice. It's a beautiful system where eveyone wins. We do not condone medical tourism, and we have no advertising, paid or unpaid, or sponsors on our site.

Our mission is to provide research-based information and to fund research. Until we have a qualified Scientific Advisory Board in place, no funds are disbursed through us. We include links to US government-approved nonprofit research funds on our site. The laws are very strict and every funding link and every fundraising opportunity requires legal scrutiny.

We have nothing financial to gain from CCSVI Alliance or CCSVI.org. We are a legitimate professional group with a strong mission and a board that lives, breathes and sleeps "paying it forward". Every one of us has either been treated for ccsvi or our loved ones have. We are passionate about what we do and we are doing it for others. We have not all had good results from our treatment, but we believe there is a corellation between ccsvi and ms and we want to help move the science along.

After meeting dozens of doctors involved in CCSVI research and treatment in the past year, I have not encountered one who is mercenary. They truly believe there is something real happening. I saw it with Dr. Sclafani, and no, he doesn't have a loved one with ms, and yes he could retire and live a comfortable life. But he's chosen to dedicate the rest of his career to ccsvi research and treatment. And he's doing it for the same reason we formed the Alliance, because we care about other people.

There's no hidden agenda, no multilevel marketing games, no ponzi schemes happening. I am sad that there are people who are so jaded and cynical that they can't believe that good exists just because. The founders/board of the Alliance feel good about our work. I hope the patient/caregiver/medical community we serve feels good about it too.

to bestadmom, cheerleader and all the others that are part of this joint effort,

i for one suffering from ms do really appreciate all your efforts and accomplishments and sacrifices.

the ms has numbed different parts of my body but it has not numbed my heart from which i truly want to thank you all from.

i can see where you came from, where you are now and where you are trying to get to. and anybody who can't see it should take a second look.

even if ccsvi isn't the answer for me and some others "at this point and time" your efforts helped us to at least get the chance to try and find out and the attention has opened up avenues to choices and thought that many of us before were just spinning our wheels.

so, it does prove to me there are some left in the world that it's not just about the almighty $$ that gets them motivated. it proves that there other motivations like helping and just doing the right thing. thanks again.

I am glad you find a "beautiful system where eveyone wins".

I don't count your "crumbs" or your overhead, neither yours neither VeeBee's, but the fact is that you admitted that you received it. Is it profit or non profit... I don't know, thats your secret - no public records of this.