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Thanks ikulo for your infomative post with links to sources..a pleasure to read.

msrelly wrote: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!

I don't think this is being done right. I don't believe in conspiracies, or coincidences. I think there needs to be lots of research done. Just not before I get my veins dilated. On the causes of CCSVI, on reflux, on MS. On whatever. I have plenty of confidence that there will always be something to study. But don't keep me sick because some mouse somewhere doesn't get EAE, and more investigation is needed. Let me get my veins dilated.

I already know, as a lot of others do, I have narrowings in my jugulars. If you don't, or you do, think there is a connection, let me get my veins dilated.

What other choice do I have? I can't even help Pharma get rich because I am too far gone for drugs. A hunger strike? Self immolation? ...since this thing is being fought in the press... it would make a good video... ...for at least 15 minutes...

OK, blug, blug, blug, blug, blug.... good thing I left the lawn mower full, back in '01... where's my matches? OK, flash memory in place (huh. that's a good one, flash memory... ) OK, let's roll this thing... viral video, here I come...whooooosh.....

guess I won't be needing those veins dilated... crackle, crackle...

Scorpion, you dont have to be sorry. I think we can both handle a conversation that has gone bad.
And you dont owe me any kind of explanation.

But listen please.

I do not represent anyone other than myself. Certainly not all Greeks. People can disagree with my behavior and i suspect most of them do. This is not important for me. Not important at all.

The only thing that matters is for us to give our fight one way or another.
All the information regarding CCSVI is already out there for everyone to see. When you repost all the negativity for reasons i have yet to understand it might have huge impact on patients that are...how should i put this...lets just say less cabable of filtering medical info. I do not think you are up to this. Nor do i thing that you have any credentials.

I realize that i do the same towards the other direction though. But have in mind that as time goes by and people are getting liberated there are NEW testimonies, most of them good. That simple. Have in mind that "anecdotal" is a greek word. It doesnt mean something that has not gone through clinical trials Scorpion. And of course it doesnt mean something that is non existant. All in all, it is not a bad thing. In case of Zamboni's and other doctor's small trials i d take their anecdotal results anytime over the known data of drugs efficasy.
Anyway, testimonies by liberated patients are not anecdotal. They are official.
I keep my ears open to bad stories too. Life s a bich. Nothing will come without a cost. And let me tell you Scorpion. I will put my ass on the line, so you will know better sooner.

Can i ask you some questions?
Let's say that i am on the table, and the vascular surgeon tells me that the job can only be done with a stent. What should i tell him in your opinion? Should i say no because neurologists say no? Does this make any sense to you? I urge you for your reply. Please, tell me what to do. I mean, Simka said that stents are really not such a biggie. Is he lying? Are all the pharmaceuticals trying to protect me? I must know the truth Scorpion. What do you think?
This is no sarcasm. I really want to know. Do you really have the answers?
I never said that there is a conspiracy (even if there are some strong indications to support it). The fact is that i do not know it. So i keep my mouth shut in that aspect. Are you ABSOLUTELY SURE THERE IS NOT A CONSPIRACY?
Can you convince me with facts? Please, i really mean it. Tell me cause i d love to know that they put our lives above the billions of dollars that are in stake. This would mean that we live in an ideal world no?

Your intentions may be good. I realize that after all, just because it seems you have no connection with Lyon. If you must know, Lyon is not even an MS patient himself. He is just another little firestarter who is trying to address to me to get some kind of attention possibly.

I am only addressing via my personal e mail account to anyone that really matters and that i feel is getting out of control. And i want everyone to see. I would sent a really dirty mail even to Zamboni himself if he did what Stewart did. This is human lives we are talking.
And i know with certainty that some neurologists are not only expressing their scepticism (which would be healthy), not only they wont help for further CCSVI research (which they are NOT needed for, so who cares) but they WONT ALLOW CCSVI believers to speak on air. And this is unacceptable. At least by me.
I feel free to use whatever language i like in order to get to them and hopefuly make them shut up. I would only open my ears to these sirens ONLY if they had FACTS in their arsenal. But they dont. And if God is just, they will never have.
From where i stand, neurologists are useless. I d better give my money to the poor. But hey!!! I AM poor due to MS...

I WILL NEVER ADVICE TOWARDS THE CCSVI DIRECTION. I really feel there is something credible in this but this does not mean anything for others. And i deeply respect that. I can only hope that when i return from Bulgaria, i ll have only good things to tell you.

Take care. If you are indeed an MS patient i wish you all my best.

if and when CCSVI is accepted the neuros that specialize in MS will need another neurological disease to learn about and my thinking is they are to stubborn and lazy to learn about a different ailment. they have specialized in MS there whole lives and have made it there careers.

zap wrote: ...........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 ...

Wow, sounds like we share the same Neuro

Hey Costumenastional,

I am very humbled by your response and I will respond to your post after I get out of work as I think it will be quite lenghty. Lyon really is a good person(although I only know him because of this website). Although he does not have MS, he can certainly help us understand what it is like to have a spouse with MS; a perspective we do not have. Someone on this thread made the comment "we are all in this togethor". That is something we can ALL agree on!

Zap said :

ms society spokesperson wrote

:

Just for the record, I am not an MS society spokesperson



1eye wrote:

I don't think this is being done right. I don't believe in conspiracies, or coincidences. I think there needs to be lots of research done. Just not before I get my veins dilated. On the causes of CCSVI, on reflux, on MS. On whatever. I have plenty of confidence that there will always be something to study. But don't keep me sick because some mouse somewhere doesn't get EAE, and more investigation is needed. Let me get my veins dilated.

1eye - I'm absolutely not against anyone getting diagnosed or treated for CCSVI if they want to right now. I'm just urging people not to buy into a conspiracy theory. I know a few people who have been treated and are doing well. I hope to soon know A LOT of people who get treated, but I think the way for that to happen is to have convincing research so that the government will fund the treatment.

I also said I don't believe in coincidences. So I'm having a hard time believing in all the coincidental closing-down that has been going on. To have all that immediately follow each piece of good news heard from each north-american surgery that is doing or planning on doing la Liberation well 'looks like carelessness' is all I'm saying. *Somebody* has a plan. Maybe people who have had surgery in a new place should just keep it to themselves, and screw registries, etc., because as soon as it is read about on the Internet, it is shut down.

When will these caring doctors let somebody get their veins dilated? I already have 3 stents in my chest, so you can't tell me it is dangerous or risky or even arduous. It is dilation with a small balloon. A lot simpler than the angioplasty and stenting I had. You can't make me believe any crap about placebo, when the Cochrane group, as it has said for years, says again this year that in placebo controlled trials, placebo was found to have no use as a treatment. It's a myth! Voodoo. Junk science.

Why not call a spade a spade, and admit that all these trials use no treatment as a control? And that these people who are claiming to feel better, really feel better? You believed them when they said they felt bad, didn't you? Or how about MRIs? Was that the placebo effect that caused the reduction in new lesions? Or maybe no-see-bo effect that causes lesions in the first place?

I'm sorry, but skepticism has it's place, and it is not in this discussion of CCSVI surgery. It may be required in a discussion of coincidences. We should be talking about logistics, and instead we're rehashing the frickin placebo effect. I was born in the 20th century, but I feel like I have somehow landed in the 14th.

Ah, well, I have to go now. Blood getting close to 100 C again. later.

Chrystal wrote: ...As I've mentioned before, no one from the MSS - none of the key players - Pres., research or communication people or any other many present MSS staff member corrected this wrong statement or the many other wrong statements made throughout the webcast.

When I had the microphone, I addressed Wendy and the panel, and said that Dr. Zivadinov himself had stated that he hadn't used the same equipment or followed the same protocol as Dr. Zamboni and that could explain the differing results....

The fact is that Dr. Zivadinov himself said that he does used the Zamboni's protocol in "Combined Transcranial and Extracranial Venous Doppler Evaluation (CTEVD Study)"

(April 14, a live Web forum on CCSVI and what it could mean to people living with MS -
Dr. Paolo Zamboni, Director, Vascular Diseases Center, University of Ferrara, Italy
Dr. Robert Zivadinov, Associate Professor of Neurology, University of Buffalo, State University of NY
Dr. Andrew Common, Radiologist in Chief, St. Michaels Hospital, University of Toronto, Ontario, CA
Dr. Aaron Miller, Professor of Neurology & Director of the MS Center at Mount Sinai, NY, member of the AAN Board of
http://hosted.mediasite.com/mediasite/V ... ebb41a8ba6)

Zamboni was sitting next to him and he is also a coautor of CTEVD Study:

[P06.144] Combined Transcranial and Extracranial Venous Doppler Evaluation (CTEVD Study). Description of the Design and Interim Results of an Epidemiological Study of the Prevalence of Chronic Cerebrospinal Venous Insufficiency in MS and Related Diseases

Robert Zivadinov, Karen Marr, Murali Ramanathan, Buffalo, NY, Paolo Zamboni, Ferrera, Italy, Ralph R. H. B. Benedict, Buffalo, NY, Gary Cutter, Birmingham, AL, Cheryl Kennedy, Makki Elfadil, David Hojnacki, Frederick Munschauer, Justine Reuther, Christina Brooks, Kristin Hunt, Michelle Andrews, Bianca Weinstock-Guttman, Buffalo, NY

OBJECTIVE: To ascertain the prevalence of chronic cerebrospinal venous insufficiency (CCSVI) in a large cohort of patients with multiple sclerosis (MS), patients with other neurological diseases (OND) and in normal controls (NC), by using specific proposed Doppler criteria (Zamboni et al, JNNP, 2009). BACKGROUND: CCSVI is a complex vascular condition characterized by anomalies of the main extracranial cerebrospinal (CS) venous routes that interfere with the normal CS venous outflow. This condition was previously associated with clinically definite MS. DESIGN/METHODS: Cross-sectional study that will enroll consecutive 1700 subjects at one MS center including: 1000 adult patients with possible and definite MS (50 clinically isolated syndrome, 50 radiologically isolated syndrome, 500 relapsing-remitting, 300 secondary-progressive, 50 primary-progressive MS and 50 neuromyelitis optica). A comparative group will include 300 OND patients and 300 adult age- and sex-matched NC. Fifty pediatric patients (<18 yrs) with acquired demyelinating diseases (MS and acute disseminated encephalomyelitis) and 50 pediatric NC will be assessed. All participants will undergo clinical examination and a Doppler scan of the head and neck. All MS patients and a subcohort of NC and OND will undergo an MRI of the brain. A consecutive subgroup (MS, NC and OND) will have also an MRI of the veins of the neck to corroborate the Doppler diagnosis of CCSVI. The Doppler, and MRI evaluators are blinded to the subject status. The prevalence and severity of venous hemodynamic abnormalities identified in the different groups will be analyzed. Data will be unblinded at three predetermined time-points based on the number of subjects enrolled: at 500, 1000 and 1700 subjects respectively. RESULTS: As of 1 Nov 2009, 473 subjects signed informed consent. The initial interim analysis following the first 500 subjects is scheduled for December 2009. CONCLUSIONS/RELEVANCE: The interim results of the first 500 enrolled subjects will be presented.
Category - MS and Related Diseases - Clinical Science

Thursday, April 15, 2010 3:00 PM

Poster Session VI: Multiple Sclerosis and Related Diseases: Clinical Trials (3:00 PM-7:30 PM)

Best regards, M.

Hi Malden,

The Fact is - At the MSS April 7 webcast, the powers-that-be were referring to the 1st Buffalo Study results when talking about the difference between Zamboni's and Zivadinov's results. Zivadinov said in an interview shortly after the release of the 1st study's results, that he hadn't used the exact same equipment for that study, and that could explain the difference in results from Zamboni's results. Really, how could the same protocols be followed if same equipment was absent?? Anyway, Zivadinov said then that he would have more advanced equipment for his next study.

At the MSS April 7 webcast, no one was referring to the 2nd study results - no one was even acknowledging their results - not even in conversations with MSS after. The lady beside me and I each had a printed copy of the very results you have copied below with us on April 7, but no one wanted to acknowledge them on April 7. Even when we were speaking with an MSS staff member after the webcast, she kept repeating, the results haven't been released yet, that's happening on the 14th and didn't want to look at them even though we had them in our hands.

Dr. Murray's response to that question by Wendy was incorrect, as noted by many, many MSers who were watching the webcast. Many also sadly noted that was not the only incorrect answer given throughout the webcast.

Only the April 14 webcast (AAN), with Zamboni and Zivadinov present, referred to the 2nd study results.

Regards,
Chrystal

P.S.

Malden, had I been incorrect in my correction of that statement, do you not think that they would have immediately set me straight, just as the person who asked about pharmaceutical influence was immediately set straight?

Chrystal wrote:Hi Malden,

The Fact is - At the MSS April 7 webcast, the powers-that-be were referring to the 1st Buffalo Study results when talking about the difference ...

Hi Crystal,

I am little confused with this 7 april / 14 april differences in statesments, but seems that there is a lot of Politic in Science ;)

M.

Hi Malden, sorry if I've added to the confusion.

Imagine sitting there in the audience and hearing some of the incorrect statements, your head would have been spinning.

Speaking of "Politics of Science", did you read Dr. Lorne Brandes' article...
http://healthblog.ctv.ca/post/The-scien ... rosis.aspx The science and politics of CCSVI and Multiple Sclerosis February 12, 2010 08:55 by Dr. Lorne Brandes

April 7 was the MS Society of Canada's CCSVI Information Webcast which only had a neurologist, the MSSC President, and a Patient with MS on the panel. I wish (and voiced my wish, as did others) they'd had a vascular specialist to speak on this vascular condition. At this session, only Dr. Zivadinov's 1st study was being acknowledged and referred to...the one with results differing from Zamboni's and the reason explained by Zivadinov was that he had not used the exact same equipment as Zamboni....

April 14 was the NMSS & AAN Conference Webcast, at which Dr. Zamboni and Dr. Zivadinov...and other physicians spoke. Wonderful of them to have on their panel a vascular specialist addressing CCSVI, a vascular condition. At this session, Dr. Zivadinov's 2nd study results (which you posted in your previous message) were talked about.

The "politics" are taking far more energy out of me than I have to give. I'd better start saving my energy for steps that need to be taken to move our CCSVI case forward.

Take care and God Bless,
Chrystal