CBC: More Research Needed in MS Battle.

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CBC: More Research Needed in MS Battle.

Postby concerned » Wed Dec 08, 2010 6:35 pm

http://www.cbc.ca/canada/prince-edward- ... h-584.html

Before anyone jumps down my throat, note the neutrality of the article.

ALSO --- I agree with the sentiment "the more research the better". It's really sad that out of the "12,000" "Liberations" performed, maybe only a few hundred have been involved in a study at all.
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Postby Cece » Wed Dec 08, 2010 6:46 pm

I agree, the more research the better. But Dr. Dake has brought up funding, Dr. Haskel, Dr. Siskin, Dr. Mehta, even Dr. Sclafani's IRB last June brought up funding. CCSVI research needs funding on an extensive scale. I hope that there will be a tipping point when it is proven just enough for bucketloads of funding to be launched its way.

I don't believe the 12,000 figure, do you? We worked it out in MarkW's thread as maybe 3000-4000 IIRC. And yeah, that data went uncaptured but the registries are coming. :)
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Postby Blaze » Thu Dec 09, 2010 6:16 am

And Dr. Sandy McDonald, a Canadian vascular surgeon and a strong proponent of CCSVI has, for months, been trying to secure funding and approval for a randomized, double blind trial.

He has a team in place of interventional radiologists, vascular surgeons and neurologists.

We need to let Dr. McDonald get on with the research--SOON!
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Postby TMrox » Thu Dec 09, 2010 6:22 am

Talking about more research needed:

Hubbard foundation: Between IRB approval in June and mid-December 125 patients have been treated for CCSVI.

79% report improvements.
1% report are worse and 17% report are unchanged.

6% have been retreated for restenosis.

http://tinyurl.com/3xr7kjv
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.
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Postby concerned » Thu Dec 09, 2010 8:22 am

Too bad it's not part of a RCT, so we could get some real answers.
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Postby TMrox » Thu Dec 09, 2010 8:43 am

Docs can learn from the IRB approved observational study that the Hubbard foundation is doing (ClinicalTrials.gov Identifier: NCT01205633) .

Safety of procedure and rate of restenosis is a main concern for any patient considering CCSVI treatment. This study might give some insight into this.

Also they'll be using the Hacke protocol and some understanding from iron deposits might be gained.

Concerned, I guess you are concerned about isolating the placebo effect. There is a double-blind randomized clinial trial recruiting MS patients in the USA:
inclusion Criteria:

•Must be 18 years old or greater and less than or equal to 55 years of age
•Score of 0 to 7 on the EDSS scale
•Diagnosis of relapsing remitting or secondary progressive Multiple Sclerosis by a neurologist and confirmed by one of the independent study neurologists
•Presence of greater than or equal to 50 percent stenosis of the extracranial veins as determined by venogram
•Informed consent signed by patient

http://clinicaltrials.gov/ct2/show/NCT0 ... svi&rank=3
Last edited by TMrox on Thu Dec 09, 2010 9:03 am, edited 1 time in total.
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.
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Postby concerned » Thu Dec 09, 2010 8:50 am

I know safety and whatnot need to be worked out, but with so much at stake, I'd like to see some solid clues as to efficacy.

According to a leading Canadian doctor, upwards of $120,000,000 or even more has been spent by MS patients looking for some relief in the past year or so alone, and I think they deserve some answers.
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Postby scorpion » Thu Dec 09, 2010 8:58 am

Blaze wrote:And Dr. Sandy McDonald, a Canadian vascular surgeon and a strong proponent of CCSVI has, for months, been trying to secure funding and approval for a randomized, double blind trial.

He has a team in place of interventional radiologists, vascular surgeons and neurologists.

We need to let Dr. McDonald get on with the research--SOON!




Do you know of any randomized, double blind trials that are occuring now?
Last edited by scorpion on Thu Dec 09, 2010 9:00 am, edited 1 time in total.
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Postby Mathd » Thu Dec 09, 2010 8:59 am

and before a randomize double blinded study, we need at least a more standardized aproach.

for the moment it's still a "try and look if it's work" process.
and we need a "if you do this like that it will work"

What I dont like in this article is they present stem cells like something completly safe.

I think, at the end of this journey, MS will be beaten by Liberation and stem cells
for those who have huge disabilities, to help the body to heal what it cant be healed without stem cells...
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Postby concerned » Thu Dec 09, 2010 9:03 am

Mathd wrote:What I dont like in this article is they present stem cells like something completly safe.


Where is this idea presented in the article?
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Postby CCSVIhusband » Thu Dec 09, 2010 9:22 am

concerned wrote:I know safety and whatnot need to be worked out, but with so much at stake, I'd like to see some solid clues as to efficacy.

According to a leading Canadian doctor, upwards of $120,000,000 or even more has been spent by MS patients looking for some relief in the past year or so alone, and I think they deserve some answers.


Whoa whoa whoa ... if we can't listen to a "rock, doctor" about MS ...

Then we certainly shouldn't listen to a "medical doctor" about economics ...

Let's play fair, if you're going to play at all.
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Postby Billmeik » Thu Dec 09, 2010 9:26 am

it's too risky to believe or trust the well meaning but deluded doc's who will use decades old knowledge to do their work. If you think a doc's better because they are from north america even when they base their treatments on assumptions from the 1960's your wrong. Just because conservative people in medicine are a bit racist and condescending to the rest of the world does'nt prove that they are right.
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Postby concerned » Thu Dec 09, 2010 9:35 am

CCSVIhusband wrote:
concerned wrote:I know safety and whatnot need to be worked out, but with so much at stake, I'd like to see some solid clues as to efficacy.

According to a leading Canadian doctor, upwards of $120,000,000 or even more has been spent by MS patients looking for some relief in the past year or so alone, and I think they deserve some answers.


Whoa whoa whoa ... if we can't listen to a "rock, doctor" about MS ...

Then we certainly shouldn't listen to a "medical doctor" about economics ...

Let's play fair, if you're going to play at all.


I wasn't quoting a "medical doctor" about economics, I was talking about the "rock doctor". You see, it's simple math. (12,000 people "liberated") *(Avg. price of $10,000)=$120,000,000.

I know my estimate for average price is most likely uber-conservative, but I'll stick with it.
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Postby Blaze » Thu Dec 09, 2010 9:39 am

scorpion wrote:
Blaze wrote:And Dr. Sandy McDonald, a Canadian vascular surgeon and a strong proponent of CCSVI has, for months, been trying to secure funding and approval for a randomized, double blind trial.

He has a team in place of interventional radiologists, vascular surgeons and neurologists.

We need to let Dr. McDonald get on with the research--SOON!


Do you know of any randomized, double blind trials that are occuring now?


Scorpion: There are no randomized double blind trials in Canada now--or even any clinical trials.

I think Dr. Mehta's trial in Albany is randomized and double blind and possibly Dr. Siskin is starting one. Someone else may have more details relating to this.
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Postby CCSVIhusband » Thu Dec 09, 2010 9:51 am

concerned wrote:
CCSVIhusband wrote:
concerned wrote:I know safety and whatnot need to be worked out, but with so much at stake, I'd like to see some solid clues as to efficacy.

According to a leading Canadian doctor, upwards of $120,000,000 or even more has been spent by MS patients looking for some relief in the past year or so alone, and I think they deserve some answers.


Whoa whoa whoa ... if we can't listen to a "rock, doctor" about MS ...

Then we certainly shouldn't listen to a "medical doctor" about economics ...

Let's play fair, if you're going to play at all.


I wasn't quoting a "medical doctor" about economics, I was talking about the "rock doctor". You see, it's simple math. (12,000 people "liberated") *(Avg. price of $10,000)=$120,000,000.

I know my estimate for average price is most likely uber-conservative, but I'll stick with it.



:roll:

Has anybody said that they believe the 12,000 people liberated? Nope

My wife was liberated and paid 0 ... so unless someone paid $24,000 to offset hers, your numbers are going to be wrong (a lot of people are using insurance for this and pay very little, except our poor Canadian friends who have to travel - we love that Canadian healthcare system you all got here in America, we'll take your money ... our economy stinks and needs something to help).
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