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MrSuccess wrote:garyak - don't know if this helps reduce your anger and frustration .... but it sure has calmed me down on this frustrating situation .....

As we now know ....the CIHR report was not what CCSVI people wanted to hear ..... however ...... this is what I read on another news site :

CIHR President Alain Beaudet has written a letter to Health Minister Leona Aglukkaq advising her of the following recommendations :

- Establish a scientific working group made up of four investigators from Canada and three from the USA funded by the MS Societies in both countries , and a representitive of the provinces and territories, to monitor and analyze results from studies investigating CCSVI worldwide.The group should hold it's first meeting this calender year.

- Based on the outcomes of these studies, the scientific expert working group should reach conclusions regarding the association [ or lack thereof ] between CCSVI and MS , and a common standard for reliably
diagnosing the condition using imaging or other techniques .

- Depending on these conclusions , the scientific expert working group should make recommendations on further studies including , if appropriate , a pan- Canadian , interventional clinical trial.

Mr. Success is pleased with this letter to the Health Minister Leona Aglukkaq.....

Now ..... let's move on to deciding who .... is going to sit on the scientific expert working group.

Let Health Minister Aglukkaq aware of your choices ..... but most important .... who should NOT be on this team .


I think we are progressing .




Mr. Success

Believe me success, I dont see it as +ve. A positive statement does not come out like this (try to imagine a person who is excited about a new treatment prospect, you will get the picture). The people on this team will be same old bastards that are calling the shots. Their attitude is anyting but +ve wrt ccsvi ...

cheerleader wrote:Marc--
It has nothing to do with all of the very conscientious human beings who work for the MS Societies...it has everything to do with the desire to maintain the autoimmune theory and the status quo.

Dr. Embry just came back from Poland, where his son was treated for severe bilateral jugular vein occlusion. He's seen the evidence. As someone else who knows what it feels like to see your precious loved one with a malformed venous system---I understand his passion and righteous anger.
Joan

I too understand his passion and anger at the situation. I do not believe this letter is complete raw anger and would be viewed as "lunatic fringe" material. If the "powers that be" toss this in to the trash it won't matter because the masses of people suffering from MS will read it and we are the ones creating the change. The theory will prove itself in time and Embry will be looked upon as a champion. IMHO

magoo wrote:
I too understand his passion and anger at the situation. I do not believe this letter is complete raw anger and would be viewed as "lunatic fringe" material. If the "powers that be" toss this in to the trash it won't matter because the masses of people suffering from MS will read it and we are the ones creating the change. The theory will prove itself in time and Embry will be looked upon as a champion. IMHO

Agreed, Rhonda----Dr. Embry is a true champion. He is funding tens of thousands of dollars into the BNAC study thru his Direct-MS organization. He wanted to help fund a similar Canadian study, and when he made this offer to a prominent MS researcher---the man laughed in his face. There is a huge disconnect between the researchers who want to uphold the status quo and the patient population they are supposed to represent. Dr. Embry's words focus the rage many of us are feeling at the MS Industry. He is not done-- by any means. There are many of us with a lot to say, and we're just getting started.

But today is a good day. Not one, but two double-blinded studies recruiting in the US, with more being announced soon.
cheer

aware of one only ..... what is the other ?





Mr. Success

Two studies from Albany, NY. Dr Mehta's got irb approval And Dr. Siskin's did too.

Thanks. Mr. Success, I read your response. This seems like it's too long to wait for us CANADIANS with no clear definite direction being taken YET.

thanks Bestadmom - what great news -

I think I'll make it a double ..... when Mrs. Success and I have our cocktail hour tonite !

I'm okay now Blood pressure normal .

Drinkin again ......... I'm drinkin again ..........

Mr. Success

Is Dr. Embry a geologist?


EDIT: I take it he is. Funny, someone who has done upwards of 10,000 angiograms is 'out-of-his-league' in talking about CCSVI but a geologist is right at home. Are there similarities between mineral veins and internal jugular veins?

scroll

Ashton Embry. A little grape seed extract with some acidophilus capsules and on the road to recovery. He is the perfect spokesman for CCSVI.

Dr Embry isn't a medical doctor, but it takes a lot of smarts to get a phd, especially in the sciences. While you rip him to shreds Scorpion, you have to give him credit for putting his money where his mouth is.

putting his money where his mouth is.

But it's not "his" money, it is money Direct-MS has collected on the behalf of people like us. In the end he is just somebodies dad who may be trying to use his Dr. status to make life better for his family & son.

Will this be to our benefit as well?

Time will tell.

okay - two very smart guy's have painted two very different pictures of the MS Society . I see the points made by both of these well spoken men.

What I really like about Ashton ..... is his ability to accept new evidence .... and do something about it . This is great .

Mark is someone who ferrets out information ..... the rest of us seem clueless to find on our own....

Both of these fine gentlemen have taken steps to see / have CCSVI intervention .... first hand . This will be invaluable .... to us.

I look to both ..... as a reliable CCSVI - MS source.




Mr. Success

The CIHR is pre-loaded with $10-15 million of taxpayers' money, which the 'MS' Society is first in line to acquire. That is THE reason the committee were hand-picked to advise the CIHR on CCSVI.

The advisory group are predominantly people already in control of lots of MS Society projects, all following other lines of inquiry. But they really want that $10 M CDN. And they also want to discredit the theory of CCSVI. They have a VESTED interest in this recommendation to the CIHR. One would almost think they were chosen because that is the answer that was required of them.

In that context it is clear that that is why the actual recommendations are hackneyed overused phrases like "NOT A SHRED". (They seem to be very interested in shreds, shreddies, and shredding.) It is because they knew ahead of time the answer they were going to give, no deliberation required, and no need to spend any time thinking up new and better worded explanations. Spending this money was a done deal, and was not going to be going to any national-level studies.

(Meantime, the American NIH is taking the lead and doing a large study on Liberation.)

The MS society had only $200,000 per year for studies (which are calculated to discredit CCSVI theory). But for large studies well we do have some more money we were saving:

Application Process and Deadlines
The MS Society of Canada 2011/2012 Annual Research Grants Competitions are now OPEN.

Interested applicants please read MSSOC Research Funding Programs and Awards Policies and Procedures for further information regarding eligibility and terms of the awards; and the MSSOC online application guidelines for detailed explanations of the online application process including renewal applications.

To begin an application, log in to https://www.mscanadagrants.ca.
Application deadline is October 1, 2010 at 23:59 EDT.
For all inquires regarding the grants competitions please email msresearchgrants@mssociety.ca.

*

Awards Offered in Partnership with FRSQ
The MS Society of Canada is pleased to announce the awards that will be offered for 2011-2012 with our partner the Fonds de la recherché en santé du Quebec (FRSQ). Click here for more information.
*

Collaborative Multi-Centre Grants
The Multiple Sclerosis Society of Canada invites interested researchers to apply to the 2010 Collaborative Grant competition.This research funding program supports large, innovative, multi-centre collaborative studies that will lead to major advances in the field of multiple sclerosis. The MSSRF collaborative grant competition will provide a maximum of $1.5 million a year per project for up to three years. This is open to research which will lead to major advances in our understanding of the causes of, and potential treatments, for MS — such as new drug therapies, CCSVI, and myelin repair strategies. The MSSRF is still funding research in genetic susceptibility to MS, pediatric MS, and stem cell therapies.

Collaborative Multi-Centre Grants -To be considered for this grant first submit a letter of intent. Read MSSRF MULTI-CENTRE, COLLABORATIVE GRANT POLICIES AND PROCEDURES. (Letter of Intent deadline is July 26, 2010 at 23:59 EDT)

So if all goes according to plan, we will fund our own 'CCSVI' studies, and spend our big money on autoimmune 'research', and then the government will give us the $10M, which we have decided is not what what we want to spend on national Liberation trials. The Americans are going to do that, so we don't have to. We have already decided, we want to spend that extra taxpayer funding on our "seven studies", which are actually shared between the two countries. So the Canadian taxpayer will fund the American research. It all makes perfect sense.

All this makes the recommendations of our consulting committee a requirement. And proves the adage that a consultant is someone to whom you give the answer, and then they give it back to you.

The MS 'Society' are out of control, and do NOT represent the interests of persons with CCSVI. CCSVI is unrelated to 'MS' which does not exist anyway The persons whose friends and relatives are giving them money SHOULD STOP. NOW. This fraud and robbery of the sick and dying, and their loved ones, and their employees, who are wasting their lives with a group who has no intention of helping, MUST STOP. NOW. This robbery of the Canadian taxpayer MUST STOP. NOW. This is not a joke. People are dying while the rich bastards play games with their money and train the next generation of scientists to do the same. This MUST STOP.

NOW

The joke is over. There is no humour left. Sorry for shouting, but STOP the 'MS' Society. NOW.

Is there any charity watch or Better Business Bureau or whatever breakdown of Direct-MS' spending?