DrSclafani answers some questions

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Re: NY Times Article on Dr. Sclafani's procedure

Postby Cece » Tue Jun 22, 2010 1:21 pm

jfhcrgvr wrote:The link to the article on the procedure that helped to save a police officer's like did not work for me this morning. Can anyone tell me why? I would like to forward it to someone who may be able to help with funding.

I sent you a pm, I just checked and the link didn't work for me either just now although it did before. I can send you a google doc of the article plus his 35 page Curriculum Vitae (with all his previous research and honors and titles listed) that bestadmom sent me originally.

edited to add: if anyone else needs this, pm me your email and I'll send it...there's also a biosketch.
Last edited by Cece on Tue Jun 22, 2010 5:13 pm, edited 1 time in total.
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Postby KikiT » Tue Jun 22, 2010 1:44 pm

I was just having a short pity party...I was sooo close!!........am trying to hold on to.. things happen for a reason. When one door shuts...another opens...
OK..pity party over!

Dr.S , chin up!! Count me in for donation and fundraising!!...Tell us what you need, the MS Marines are ready for battle.
Any Generals?, PM me for any help needed. I am on LI.




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Postby girlgeek33 » Tue Jun 22, 2010 2:11 pm

Went to see 'get him to the greek' to get some stupid humor to counter the news. It was a bandaid but now it feels ripped off. I need to do something to work towards our Rock Star back in biz!
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Postby hope410 » Tue Jun 22, 2010 2:11 pm

Please do not despair, Dr. Sclafani.

Where there is a will, there is a way. And there is definitely the will. A tremendous and powerful collective will.

We will persevere, and succeed. I have no doubt that one way or another, this will work out and you will overcome this obstacle and succeed.

Please don't let this affect you personally. This can not take away from all that you have given to us and, no doubt, all that you will again. Just differently, that's all.

This WILL work out somehow, some way, I just feel it. With determined and resourceful and resolute minds behind you and with you, we'll problem-solve an even better solution to this challenge.
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Re: Partner/Satelite Clinic

Postby FlashHack » Tue Jun 22, 2010 2:19 pm

bmk1234 wrote:I'm no Dr. but in my simple mind, the best (and quickest) way to get up and running would be to partner with another DR. S we know...
Had a question for Dr. Siskin about something else and so I mentioned Dr. Sclafani's IRB rejection. Here's what Dr. Siskin replied:
Dr. Siskin wrote:I want you to know that I am in constant contact with Dr. Sclafani. In case you don't know, I trained with him years ago and consider him to be a friend. I am aware of what he is going through at the present time and it is my hope that we can find ways to collaborate. We're on it.
A ray of hope in the gloom...
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follow the money

Postby 1eye » Tue Jun 22, 2010 2:24 pm

I have said I don't advise anyone what drug not to take. Remember this when you read the following: I am not a doctor, and do not give anyone medical advice.

I now feel that the only way we can help ourselves is a full boycott of all DMDs. We have not done this to ourselves. We have been put into this position by greed.

These drugs don't do much anyway from what I can tell. For some there is a limit to how much you can take. Others poison you in their own ways.

CCSVI came at a very inconvenient time for DMD manufacturers, with the new (but still stellarly expensive) pills just approved. I know somebody who's on them. I will be telling her about a boycott.

We have all seen amounts of money talked about. Amounts like $10M that the MS Society of Canada wants from the taxpayer. $150 Million to treat everyone in Canada at $2000 each. $1.5 Billion to treat a population ten times ours, like the US, at $2000 each. Our government just spent a billion of our money on a meeting. Which we don't have to spend in the first place.

ALL of these figures are DWARFED by the revenues of the DMD manufacturers. $8 billion is an unimaginable amount of money, and that's PER YEAR.

Of course all possible roadblocks are being used. Now they are doing this to a man like Dr. Sclafani, who is one of the best hopes we have,

The MS Society is not on your side, either. Just today I saw that the hope is not only that Zamboni's theories will be disproved by the MS Society but that MS will be found to cause CCSVI, at an early age, by the childhood MS study. I am willing to contribute if anyone wants to take a child to Poland.

These studies are a joke, anyway. There is no way on earth that that amount will pay more than the sugar for their coffee. The MS Society is COUNTING ON that $10M to flesh them out. Write to your MP, Health Minister, and Prime Minister (if you are Canadian) and tell them NOT TO GIVE THAT MONEY TO THEM. And perhaps they want money from American taxpayers as well. A boycott of the MS Society as well, seems appropriate.

Lastly, do we really need any more neurology appointments? I sure don't. I think I am definitely in the 'adios' category from their point of view anyway. They leave my real care to others, and just tell me what I have known a long time without them. I don't need their prescription pads anymore. I'd rather die without Liberation, than give them or drug companies any more blood money. I guess they might be counting on that as well. These IRBs can be sued too. The law takes a long time, but it is mostly fair.

Dr.Sclafani, I have listened to you for several months, and I am grateful for all the information and all you have done for us. I feel as though a lot of very vulnerable people have been deliberately led by your IRB on a wild goose chase, never intending to allow your trial. The government of my country is ostensibly going to allow treatment with trials at the same time. I think there is a lot of power being wielded in high places and we shall soon see who owns our government.

You can still do it.
I'm sure we can come up with some Alliance equipment money or something. And rent space somewhere.

It might be time for some Vitamin C.
"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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Postby soapdiva884 » Tue Jun 22, 2010 2:47 pm

MaggieMae wrote:My husband is (I think because we called the first week in March) on the top of Dr. Sclafani's list. Why does this have to be so difficult? This is my husband's only hope because the Tysabri doesn't seem to be working anymore. We just came back from his neurologist appt and infusion and I was hoping for a positive outcome when I came to the forum today. I am so sad that I could cry.


Maggie, my boyfriend was 1 patient away from liberation with Dr. S when he was shut down.
I just had a good cry and told my boyfriend of the outcome of the IRB, he looks so wounded. I can not even describe the look in his eyes right now. My boyfriend deteriorates rapidly on a daily basis, I watch him lose his movement everyday.
I believe the IRB had NO intentions on approving this. This seemed to be a game they just played with Dr. S and everyone who was waiting to be liberated.
DR. SCLAFANI, WHAT IS IT WE CAN DO??? PLEASE ALLOW US TO START A FUND FOR YOU!!! PLEASE LET US HELP YOU AS MUCH AS WE CAN!!! This is just disheartening, but not impossible. Dr. S will prevail and good will come of this I just know it.
We are still here and on your side and waiting for you Dr. S---Billie and John in Upstate NY
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Postby MaggieMae » Tue Jun 22, 2010 2:58 pm

Soapdiva884,

I knew that my husband wasn't at the very top, but I think he was probably in the first 50 because of my conversation with Holly.

Anyway,thank you for responding to my post. I'm feeling very defeated right now. I can't image how Dr. Sclafani must feel.

I just watch my husband struggle each day, sometimes crawling up the stairs because he is so exhausted. This is his last hope.
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Postby soapdiva884 » Tue Jun 22, 2010 3:04 pm

MaggieMae wrote:Soapdiva884,

I knew that my husband wasn't at the very top, but I think he was probably in the first 50 because of my conversation with Holly.

Anyway,thank you for responding to my post. I'm feeling very defeated right now. I can't image how Dr. Sclafani must feel.

I just watch my husband struggle each day, sometimes crawling up the stairs because he is so exhausted. This is his last hope.


(((humongus hugs))) to you and your husband! :cry:
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Postby Moom9335 » Tue Jun 22, 2010 3:06 pm

We need one voice to have power. Where is the CCSVI Alliance? They can legally take our money, represent the CCSVI cause and create a strong voice that cannot be silenced or ignored. All our efforts amount to nothing if it is not coordinated and united.
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Re: follow the money

Postby Vivianne766 » Tue Jun 22, 2010 3:13 pm

1eye wrote:I have said I don't advise anyone what drug not to take. Remember this when you read the following: I am not a doctor, and do not give anyone medical advice.

I now feel that the only way we can help ourselves is a full boycott of all DMDs. We have not done this to ourselves. We have been put into this position by greed.

These drugs don't do much anyway from what I can tell. For some there is a limit to how much you can take. Others poison you in their own ways.

CCSVI came at a very inconvenient time for DMD manufacturers, with the new (but still stellarly expensive) pills just approved. I know somebody who's on them. I will be telling her about a boycott.
...
The MS Society is not on your side, either.
...

Lastly, do we really need any more neurology appointments? I sure don't. I think I am definitely in the 'adios' category from their point of view anyway. They leave my real care to others, and just tell me what I have known a long time without them.





Very well said. THANK YOU.
I also have been thinking about not taking the med' I'm on. (beta seron- every other day injection. Yuk ! )
I have not seen my neuro for a year and probably won't any time soon.
:x
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Postby soapdiva884 » Tue Jun 22, 2010 3:17 pm

arielmt wrote:
girlgeek33 wrote:
Cece wrote:
drsclafani wrote:3. THAT RANDOMIZED CONTROLLED STUDIES WERE ALREADY UNDERWAY IN BUFFALO. ANYONE KNOW ABOUT THAT?


It's a small study of 30 patients. First ten are getting the treatment as a safety/pilot twenty. Of the next twenty, half will get the treatment and half will get placebo. I don't know how 'underway' it currently is.

:cry: :cry: :cry: :cry:

I cannot believe this. But it'll be ok. You cannot keep a good doctor down.


People are starting to get contacted and scheduled for this. But they MUST be on DMDs or they are disqualified from the study!!!!


This is true. I am in Buffalo and was contacted yesterday to be in the first cohort of 10 people to receive testing (to be conducted today and tomorrow) and, if positive for CCSVI, receive treatment next Wednesday.

I was disqualified because I do not take any disease modifying drugs (DMDs). It was mentioned that 5 others preceding me were disqualified for the same reason.

I was told that the first cohort of 10 were to prove the safety of the procedure. The second cohort of 20 would have a 50% chance of actually receiving angioplasty. The other half would receive a sham procedure.

I would not have had to pay for any of this were I able to participate.

At this time, this is the only treatment study the BNAC is doing. All of their other studies are for imaging. The results from the first study of 500 were released this spring. The primary current study will ultimately have 1,700 people and I participated in this in April. That's a blind study, the results are not given to participants and I did not pay for it.

Another study is the self-funded study. For this, they are charging $4,300 for a set of tests (more than just MRv and Doppler ultrasound) and a clinical visit, in which the results are given. However, they require you to sign a legal disclaimer that states "any information you gain from these Tests is purely informational and educational and will not be able to be used by you or any other person to diagnose, cure, treat, mitigate, or prevent your MS." I'd have to say that's just a CYA because they know darned well what people will do with their positive results.

I am so very sorry to hear that Dr. Sclafani did not get IRB approval. It makes no sense. I will offer to help in any way I can with finding a facility that will support Dr. Sclafani and assist with fundraising.

arielmt
Buffalo, NY


Regarding the Buffalo thing, my boyfriend was called last week because he had called a long time ago to be put on their list and they wanted to know if he wanted the testing done. They had space available for him this week, he said to her he was not interested until the treatment was being done. He said why would I pay and go through all of that for you to tell me I have CCSVI and you CAN'T or WONT treat me for it. She said oh ok and they ended the conversation.
There was No mention on her part of them doing the treatment. WTF?????
John would NOT have said No if they were offering the treatment. WTF????
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Postby belsadie » Tue Jun 22, 2010 3:21 pm

This is a TRAVESTY!!!. Talk about being transparent...
Do they really think their argument makes any sense on scrutiny?

It was suggested no more DMD.............I'm in
no more neuro appt....I"m in
The MSS $ now going to Reformed MS Society

I will NOT be denied the rest of my life as a healthy person.

Dr. S., We will not abandon this quest for justice for all of us and be assured YOU are an integral part of our community.
Please, don't despair....They'll be eating their words and SOON
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Postby HappyPoet » Tue Jun 22, 2010 3:28 pm

arielmt,

HappyPoet wrote:A question for everyone:
Is BNAC charging their treatment study participants? I ask because I know they're charging self-referred MSers for CCSVI tests.

Thank you very much -- while commenting on another's remarks, I appreciate that you thoroughly and professionally answered my question, too...

arielmt wrote:I am in Buffalo and was contacted yesterday to be in the first cohort of 10 people to receive testing (to be conducted today and tomorrow) and, if positive for CCSVI, receive treatment next Wednesday.

I was disqualified because I do not take any disease modifying drugs (DMDs). It was mentioned that 5 others preceding me were disqualified for the same reason.

I was told that the first cohort of 10 were to prove the safety of the procedure. The second cohort of 20 would have a 50% chance of actually receiving angioplasty. The other half would receive a sham procedure.

I would not have had to pay for any of this were I able to participate.

At this time, this is the only treatment study the BNAC is doing. All of their other studies are for imaging. The results from the first study of 500 were released this spring. The primary current study will ultimately have 1,700 people and I participated in this in April. That's a blind study, the results are not given to participants and I did not pay for it.

Another study is the self-funded study. For this, they are charging $4,300 for a set of tests (more than just MRv and Doppler ultrasound) and a clinical visit, in which the results are given. However, they require you to sign a legal disclaimer that states "any information you gain from these Tests is purely informational and educational and will not be able to be used by you or any other person to diagnose, cure, treat, mitigate, or prevent your MS." I'd have to say that's just a CYA because they know darned well what people will do with their positive results.

Kindest regards,
~HappyPoet
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Postby Cece » Tue Jun 22, 2010 3:48 pm

soapdiva884 wrote:There was No mention on her part of them doing the treatment. WTF?????
John would NOT have said No if they were offering the treatment. WTF????

The 30 person treatment study is separate from the pay-to-be-tested program they're also offering. They're only offering treatment to those twenty people, it was a different sign-up online form long ago. I don't think he missed out on anything there. Especially because of the risk of being in the sham-treatment group. :(
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