This Is MS Multiple Sclerosis Community: Knowledge & Support

Meh. It seems to me like a move to try to control the message to me, we'll see how/if they develop it though. Reminds me of the US MS Society buying paid search engine placement for CCSVI terms, and pointing them to this:

http://www.nationalmssociety.org/news/n ... DQodHg3WaQ

Correct. They ARE making a move to control the message.

Would it not be in everyones best interest to have one prime source for CCSVI information ???? One you can trust ?

Remember this. The investigative researchers are seeking funding from the very organization that you seem to view as suspect.

As of today everyone is anxious and emotional over the false notion that CCSVI research has slowed to a crawl. I understand that. But take heart with this.

The MS Societies have offered to fund CCSVI research . I can not recall the dates for proposals . Look it up youself. It should be soon.

The proposals will be carefully examined . Then funding awarded to legitimate researchers. Who in turn will recruit willing CCSVI volunteers.

When the researchers have feed back or trial results to report , would it not be in the best interest of everyone to read about it on the information page of the organization that funded their research ?

I'm not interested in reading CCSVI news fresh from the TIMBUK2 Times.




Mr. Success

The MS society has offered (under great pressure) 100 000 dollars. A mere pittance.

I have read (most of) these responses from MS societies, and wonder at why so much weight is given them. It is clear to me that these societies either do not believe in Zamboni's theory, don't want to believe it because it threatens the incurable status quo, and "we have really cushy jobs advocating for you (and VRM mortgages)", or they are beholden to Big Pharma (no matter if they give most of the money that you raise back to big pharma in research grants), and won't "believe" in it. How much have they given to drug research, in comparison to CCSVI research?

Clinics, and trials, are popping up everywhere. I feel that MS societies are now irrelevant - relating to the truth, so ignore them, and do not contribute.

I heard a rumour that the UBC trial was not even going to go forward, on the basis of irrelevance. It would not surprise me.

Welcome to two-tier medical care.

_________________
My name is not really Johnson. MSed up since 1993

Until something better comes along , the prime information source for MS is the NMSS and other MS societies. You can agree with them or not ...your choice in a free world.

The NMSS society and others are guardians of a large collection of money.

They are exercising exteme caution in providing funding to any new or existing MS research . And they are doing a good job.

Have you truly read the NMSS position on CCSVI ?

CCSVI-MS is essentialy a new idea. A good read - and spokesman - is Ashton Emery . If you have been following Mr. Emery's editorials , he makes a point out of admitting CCSVI has only recently come to his attention.

To expect the NMSS to break open the purse and pour money into a new avenue of MS research - without carefully examining the people involved and the end results - would be reckless on their part.

When the day comes - and none too soon I might add - CCSVI becomes the accepted MS remedy .... I expect any and all MS Societies and Health Insurance providers to fund CCSVI ...without hesitation .




Mr. Success

I agree with Johnson. Ashton Emery says that MS patients should get tested and treated. I don't trust the MS societies anymore. Dr. Mark Freedman, a vocal critic of Dr. Zamboni. Freedman is in longterm MS research, funded by the Canadian MS Society the same time he is on the research comittee.He is not the only one. Selfinterest, money and ego's are at stake. Concern about MS sufferers is not the priority. I read that there is a demonstration May 5 in Ottawa, we should have demonstrations in every province that day. The MS society should help to organize that, they could do some fundraising for CCSVI that time too.
For them to provide only $ 100 000 for each research project is a joke.