This Is MS Multiple Sclerosis Community: Knowledge & Support

I notice he used the word unfortunate, not unpleasant, and I can agree with the use of that word...blood thinners have a known risk but it is considered acceptable and they are prescribed in large numbers every day...no one is calling for an end to the use of blood thinners. It is tragic and unfortunate that a person succumbed to a known complication of blood thinners. It casts doubt on whether it was the blood thinners or the procedure that was at fault. I tend to take what the coroner said as the answer, rather than the media's opposite view. And I think it should not even need to be said, cheer, that you bear no fault in this...

Anyway we can look no further than Lindsay Lohan's career to see if there can be such a thing as bad press....

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

Cheer, if I'm reading this right (cog fog)... bad idea about that Montel invite, sorry.

We know my brother isn't a self-serving celebrity -- he can offer advice, tips, etc., although CCSVI Alliance may already have that area fully covered.

Jim sponsored the NYS Special Olympics and Make-A-Wish Winter Olympics at Lake Placid for 20 years. He has skills.

This is serious, and Cheer and Dr. S are right, in my opinion, bad press is bad press (just ask cops about that). Minimizing that could be helpful. I need more sleep.

Gotta run,
~Pam

lol, CeCe! When it comes to the entertainment industry, the general consensus is that press of any kind is better than no press at all. Hence, the reason why so many washed up celebrities go on brutal, tell all/show all reality shows.

As someone who's very familiar with the media, I can say that any attention is not better than no attention. When it comes to medical issues, the most important thing is accuracy and facts.

I forgot this part...
Jim may be self-serving... as Dr S says. Jim did run those programs for a long time so I like to think he did get something out of it... lots of things out of it.

But I have a strong feeling he'd bristle at being called a celebrity.

Really gotta run,
~Pam

I for one don't care what some pseudo-celebrity has to say regarding ccsvi. The push needs to come from physicians and scientists. That holds more weight and is more influential.

I agree with you, thornyrose.

My bad. I misread the doctor's post. I agree with thornyrose that the push should come from scientists and physicians. So far it seems the push has come primarily from internet bloggers. I still would like to know why anyone who does not jump on the CCSVI bandwagon has a hidden agenda(usually financial) while those scientists(who now receive funding for CCSVI research), CCSVI researchers(also now receive CCSVI research funding), and doctors(who get paid to perform the liberation procedure) who are financially invested in CCSVI research are considered "saints". If everyone is self serving than Zamboni is no different than Friedman, they just have different interests but the bottom line is money.

I just remembered...

Jim was on Montel because of a missing persons case in our area. A student went missing from the University at Albany (my alma mater). Her name is Suzanne Lyall, and I met her parents at Christmas dinner several years back.

She was the second student to go missing from the university during Jim's time as head of major investigations. Both cases remain unsolved to this day.

Forget publicity. I just want Montel to fund some CCSVI research. If anyone takes Montel's opinion--good or bad--on CCSVI as some kind of reliable statement and gospel truth, well then that's sad.

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dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />

Your point is valid, Scorpion. I work in the financial services industry and know money quite well.

You're right- scientists, researchers and doctors performing the Liberation procedure all stand to gain here. In the same light, MS researchers, pharma companies and neuros all have gained- for years- based on an autoimmune theory that was never proven. Expensive drugs, treatments and recurring neuro visits from a community of chronically ill patients all equal recurring revenue. Not only recurring revenue, but revenue that can be forecast with anticipated growth due to the new patients diagnosed every year.

The tobacco industry used to develop marketing plans that targeted children and teenagers, remember? Get them young, get them hooked and book the revenue for life. Now I am not comparing pharma et al to tobacco companies, but I will say that the marketing plans for CRABS don't seem to be very different- get into the doctor's offices, start with patients immediately upon diagnosis, fund research that supports new drugs. Not new cures- new drugs.

Those that support CCSVI in the medical community will make money, to be sure. But to make a fair comparison, Scorpion, you would need to say that the Liberation procedure would have to be performed monthly- which isn't the case. While there have been cases of restenosis, that has not been universal. No IR or vascular surgeon could possibly be banking on getting that same patient's money on a regular basis.

In the earlier part of this century, the United States was dotted with special hospitals to treat tuberculosis. The treatments were all experimental in principle, because patients still died. We now know that treating TB by letting the patient sit in sunlight for hours is ludicrous- but at the time, that was a justifiable treatment option. No one dies of TB anymore in this country- because we figured out how to cure and prevent it. I see MS now in the same light; I pray that one day our children and grandchildren will learn how the disease was treated as an autoimmune disorder when its roots were really vascular in nature. I hope they teach that history lesson in school to encourage our children to be open-minded and see all possibilities.

Frankly, I hope that the financial opportunities afforded with CCSVI push more doctors to support the principal and the treatment of this disease.

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Three veins angioplastied.  One renewed life.  

Do you think people are angered just like that?

1) It was the dismissive comments of some scientists which resulted in patients looking at neuros with doubt and disgust.
2) The comments were subjective without basing on any scientific fact or study.
3) What made it worse was that two of foremost Drs did not have any qualms in shooting their mouth off. Of course, no one is as guilty as Dr. Freedman. I think the other Freedman (I mean Dr. Khan) did better in controlling himself.
4) You have both Dr. Freedman and Dr. Khan mentioning that research is going on that will prove CCSVI is "hoax" in next 1 year. If research is going on, how do they know the outcome?. Can you believe the results when research is done with such a close mind?
5) Clinic after clinic is being shut down as soon as the name comes out on FB or TIMS. Is this just a coincidence or concerted efforts that are being played in the dark?
6) Patients who are able to walk after surgery are said to have been experiencing Placebo. This is utter insult to the patients.
7) Why is that the neuros are coming out so openly against CCSVI. If they really cared for patients, they could have asked for more research and more money for research (if it works it helps MS patients, which is what they want; if it does not work, they save MS patients from "dangerous" procedure"). Not believing is one thing (every scientist has right not to believe or criticize (but based on facts) someone else's work), but reason for downright dismissal?

We live in Pittsburgh, an area known for its teaching hosptials and research.

Anyway, wifey went to the head Neurologist there, and asked about CCSVI. He actually had a conversation with her about it and said it is a theory and needs to be researched. It is "interesting".

Anyway, this guy is very proud of all his involvement with drug research and all that.

So then she asked him if CCSVI made sense to him. He said "no". He went on to explain why it didn't - the point being that he didn't understand veins. He also said, well how do the MS drugs (CRABS) help people then if CCSVI is the cause. The drugs aren't curing CCSVI ...

He said it's (CCSVI) definitely related though. There is no doubt about that, it has been proved, but more research needs to be done into how it's treated.

So this guy, who is probably even a step beyond Freedman, is at least receptive to the idea of CCSVI as a treatment to MS.

I wish I was there, because while the wife is OK with her knowledge of CCSVI, I've learned everything I possibly could about it and I think I could have presented a lot of questions that may have trumped his arguments (like I would have brought up MS coming after trauma accidents to the neck and spine - or the prevalence of lesions near veins).

I didn't want to undermine this guy or anything like that ... just have a debate with a neurologist. He did seem receptive to the idea though - and like I said ... he just doesn't understand the veins.

ALSO - I've heard of the first person in Pittsburgh getting a referral for doppler ultrasound and seeing where that goes recently from his clinic.

We've been doing my wife's stuff under the radar through back channels, but this is the first that has come through the main clinic ... so that's good stuff. I don't want to get anyone's hopes up just because it IS one person and one test - no procedures here at all ... just a test. I also don't want everyone scrambling to call Pittsburgh and think you can get a test ... ain't gonna happen ... but it's something.

scorpion, why so hostile?
Are you sure that dr zamboni gets more money for treating patients with ccsvi?

I don't. I am on salary.

This is not to say that everyone has no self interests, of course. whether they are money or feeling like mother theresa or something in between

and currently, i am not aware of IR with grant funding for this

also, not to say that i dont like money, or noteriety or satisfaction

Dr. Sclafani, thank you for your contributions to this board. I mean that sincerely. I have seen others extend invitations to the naysayers for equal time, but I don't see any of them present to address this community from behind the skirts of the MS Society.

The continued focus on placebo effect results astonishes and insults me as you note as well. A feeling of overall better health may be attributable to placebo, but not restoration of feeling, improved cognitive and fatigue, let alone walking. All of these are real and remarkable results; to place these results in the category of "placebo effect" is a weak and transparent attempt to squash the oncoming onslaught.

Thank you for standing up for this community. I only hope you are able to practice again soon- I was actually in touch with your office and was really hoping to get in.

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Three veins angioplastied.  One renewed life.  

I think this is the misunderstanding: placebo does not mean that it's not real or that it's all in your head; placebo can mean that someone is experiencing real, measureable results after a sugar pill/fake treatment/what-have-you.

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition