This Is MS Multiple Sclerosis Community: Knowledge & Support

These AM Buffalo News segments belong on this thread and describe what has been going on with this study so far...

Segment 1:

http://www.wkbw.com/programming/am-buff ... 22814.html

Segment 2:

http://www.wkbw.com/programming/am-buff ... 22949.html

I like the way these NEUROS talk about CCSVI! We'll be hearing about the results soon!

A/C

(If these were done before 7/4, day 30 should be around 8/3 when they are allowed to reveal results about the 30-day safety study, right?)

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If you can't explain it simply, you don't understand it well enough. - Al Einstein

The first ten were done the last few days of June, so the safety study is now complete. Anyone know how they fared? Anyone know if the next 20 with the sham treatment have been schedules - treated?

They should be treated imminently. After the first ten were done, they needed a one-month wait before a check-up. That should be it for the 'safety profile' of that bunch so, assuming all was safe, the next step is to do the next twenty.

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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

It would be great to hear more about how these 30 initial patients are doing. Does anyone here have insight. I appreciate that it is a small study, but any evidence on the purported placebo effect would be greatly beneficial.

Dr. Levy talked about a continuum of treatment and a subset of 'MS' (only treating RR). I think that is to allow for the possibility of CCSVI treatment failure, at which event neurologists get the case back. See these guys are promoting the point of view that not only are neurology specialists required to 'authorize' the procedure (testing) but also to control treatment, and thus, to assess when drug treatment is the only option left. Also, when drug treatment is the better option (if it is very successful without requiring 'minimally invasive surgery').

That, I think, is because they even now are not considering the possibility that 'MS' patients will vote with their feet and decide for themselves what kind of specialist they need. They will, anyway. Does anyone think people who have the option of a Dr. Sclafani or a Dr. Mehta, will let their GPs tell them they must consult a team of neurologist and neurosurgeon? These doctors all publish papers, and it is going to be the doctors with the best treatment record, and the best explanation of it, to whom people will go. All options are back on the table, in free countries, such as the ones where people are traveling.

I am frankly surprised that in 2010, we still don't know if a spinal lesion is caused by blood, or whether disability is caused by problems in motor centers in the brain, or by problems in the spinal cord. Doesn't handedness reverse outside the brain? I have never heard of any direct mapping between brain locations and symptoms, though I do believe the technology must exist to do this (PET scans?).

I think we have been too long drug-focused and spent too much money developing drugs, without learning enough mechanism. But that's just me.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

And me.

And me.

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Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse

....me too!!!

I would have thought someone here would know if the patients were treated and how they were doing. The Buffalo morning news said the doctors would be back after the the first month was up. Anyone know?

Thanks

They said that they will wait a month, then write an article, then have it peer reviewed and published in a scientific journal. Think we have to be patient a little longer... though it's hard.

I guess they way things went when they published their initial findings via press release wasn't really what they wanted (much debate and confusion about their numbers).

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"There is only one good, knowledge, and one evil, ignorance." Socrates

All true, but I don't think they wait for the publication before going on with the trial. The FDA or the IRB or both can approve begining the efficacy portion of the trial prior to publication. We will have a good idea about saftey if they start doing the next set of patients.

Does anyone know where the funding for this study is coming from?

I have read through the UB press releases and newsletters but it doesn't mention this. I assume the funding is external and not from the universities opperating budget.

Bruce.

bruce,

Funds for the BNAC studies are coming from grassroots fundraising. Direct-MS (Ashton Embry) has made 3 challenge grants to BNAC. To find out how you can help go to :

http://msterypartyccsvi.bnac.net/

ozarkcanoer

In fact, it was even worse. Every book or article starts with "MS is an autoimmune disease in which mielyn is ....". Nobody ever cared to proof that, and nobody ever questioned the dogma. Very weird.

Even more weird when somebody tries to find a definition for MS. There is none. There is only something about scars in the brain, which are never properly defined or even described.

The whole research procedure has been a big piece of shit. It is funny that the same people that performed it now claims that CCSVI research is anti-scientific.

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You can get a worldwide list of available sites for CCSVI at http://www.ccsviclinic.info

Seems like a good use for Milk of Amnesia.