Whats Mark Freedman up to, read more

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Whats Mark Freedman up to, read more

Postby NZer1 » Mon May 31, 2010 1:24 pm

A new question has been posted on the Multiple Sclerosis Society of Canada's MS Answers website:

Q: What is the status of the Ottawa Bone Marrow Transplantation study led by Dr. Mark Freedman and Dr. Harold Atkins? I know recruitment began in 2000 and that, as of January 2005, 11 people received transplants. In 2007, the MS Society announced an additional $2.4 million to continue the trial. We are now in 2010. Any news?

A:All patients have been fully recruited and transplanted (ie. 24 in total) with follow-up now at 6 months – 8+ years. A full clinical report is being submitted for publication this year. The results have prompted discussions with the Ministry if Health to add BMT as a reimbursable treatment for MS.

5/31/2010
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Re: Whats Mark Freedman up to, read more

Postby frodo » Mon May 31, 2010 2:27 pm

NZer1 wrote:The results have prompted discussions with the Ministry if Health to add BMT as a reimbursable treatment for MS.

5/31/2010


Reimbursable treatment with only 24 people? And they still claim that it is too early to consider valid the CCSVI trials?

By now there is at least one with 600 people in Kuwait and around 700 (1500/2) in BNAC. Am I the only one seeing a bias?
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Postby mangio » Mon May 31, 2010 2:57 pm

Interesting isn't. It seems some on the ms medical advisory committee
are also recipients of the largest funding grants ever given out
by the society. Makes one wonder.

The NIH in the US is about to very wisely change policy with respect
to researchers and their relationships with pharma and biotech.
Everything above 5K will have to be opening declared. We are pushing
for the same changes here.

Everything is so muddled by these over-cosy situations.
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Postby blossom » Mon May 31, 2010 7:44 pm

the ms society did finally put ccsvi in their magazine but with a lot of arm twisting to even get it that far. but, i would be more impressed if they would have stated that they are Right now Funding training for proper testing and treatment of ccsvi in the us and worldwide. the treatment should have been available to us yrs. ago and has been kept under the rug. if they want to say they were unaware of ccsvi that's ok. THEN MY QUESTION TO THEM IS HOW MUCH RESEARCH REALLY HAS BEEN GOING ON THAT WAS TRUELY LOOKING OUT FOR US- THAT REALLY HELPS AND HAS A "POTENTIAL CURE"??? THE PROOF IS WELL DOCUMENTED, IT'S NOT A NEW EXPERIMENTAL SURGERY, IT'S WORKING!!! THE RESEARCH WILL BE FOREVER ON GOING AS THESE DOCTORS ARE ALLOWED TO FINE TUNE THIS. "IF A BUNCH OF SICK PEOPLE OR THEIR FAMILY OR CAREGIVERS WERE ABLE TO TRACK DOWN ZAMBONNI'S WORK AND OTHERS WORK WITH CCSVI WHERE THE HECK HAVE THEY BEEN???? TALK'S CHEAP-IT TAKES MONEY TO BUY WHISKEY!!!!! AND I DO FEEL STEM CELLS WILL COME INTO PLAY BIG TIME TO HELP US TO REPAIR OURSELVES AFTER THE PROGRESSION IS STOPPED BUT GETTING MY IMMUNE SYSTEM KILLED OFF DOES NOT MAKE NEAR THE SENCE CCSVI DOES.
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Postby mangio » Mon May 31, 2010 9:11 pm

Well said. I know one of the 24 patients of the Ottawa protocal. She
was on death door literally, hence was accepted for the trial but has
had suffered quite abit of damage.
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Postby Vhoenecke » Mon May 31, 2010 10:44 pm

@ blossom,

Yes they put it in their magazine but at the back. Who reads their garbage anymore. Have asked to be taken off their list. Don't know many MSers with much to do with the Society. Freedman uses them as his cash cow, 24 people allow it to go to the government. ONE DIED!
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Postby blossom » Mon May 31, 2010 11:25 pm

VHOENECKE, IN THE MAGAZINE I GOT IT WAS IN THE FRONT PAGES. I'M IN S.W.PA. USA IF THAT MAKES A DIFFERENCE. THE POINT I STILL GO BY IS THAT THERE ARE WAY MORE PEOPLE THAT HAVE MS THAT ARE NOT AWARE OF CCSVI. THEY JUST GO BY WHAT THEIR NEURO'S TELL THEM OR THESE MS MAGAZINES. I UNDERSTAND THAT A LOT OF PEOPLE HAVE NOTHING TO DO WITH THE MS SOCIETIES ANYMORE BUT THIS IS BECAUSE OF HOW THEY ARE HANDLING THIS CCSVI ISSUE. THERE ARE PEOPLE I TALKED TO THE OTHER DAY THAT KNOW I HAVE MS AND THEIR COUSIN HAS MS AND THEY'RE TELLING HOW THEY HELP RAISE MONEY FOR THE MS SOCIETY. I'M TELLING THEM NO,NO, NO, DON'T GIVE THEM ANOTHER DIME UNTIL THEY STEP UP AND MAKE SURE WE ALL GET TESTED AND TREATED THEN WENT ONTO EXPLAIN. SO MANY PEOPLE OUT THERE WITH MS OR OTHER PEOPLE JUST AUTOMATICALLY LOOK AT THE MS SOCIETY LIKE THEY WOULD BE THE ONES TO GET INFO. ETC BECAUSE THIS HAS BEEN THE NORM FOR A VERY LONG TIME. UNTIL SOMEHOW IT IS IN THE NEWS BIG TIME. THERE ARE A LOT OF MS PEOPLE AWARE OF CCSVI BUT I AM WILLING TO BET WE ARE THE MINORITY AS A WHOLE. SICKENING AS IT IS THESE MS SOCIETIES STILL HAVE THE CLOUT TO GET US TESTED AND TREATED SO, UNTIL CCSVI IS OUT THERE IN PLAIN VIEW THESE BLOOD SUCKING RATS ARE STILL CALLING A LOT OF THE SHOTS.
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