As well, in the same story, a local MS Society of Canada volunteer has decided that he can no longer support that group:
I think that there are many others who will do the same. Can the MSSC be saved... and should it be saved? A non-MSer friend of mine who is following this story with great interest believes that we should identify people within the MSSC who are not so hard-headed and work with them to completely "re-engineer" the organization. Others believe that it is broken beyond repair. What do you think?
Meanwhile, a local activist who helped persuade Kennedy to support automatic clinical trials has decided to quit his leadership role within the MS Society of Canada. Ted Warren, who led the society's St. John's-Mount Pearl chapter, said he expects others to split with the group over its opposition to starting clinical trials. "I think it's unforgivable," Warren said Wednesday. He stepped down "in protest as soon as I got the news yesterday [about] the position that the MS Society has taken."
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I think the MSSC is a great organization and while it may have been caught off guard by the reaction of MS'ers, it does not deserve the ire from its members and others.
ReplyDeleteI was diagnosed in 1993 with MS and have seen 'breakthroughs', 'possible cures', etc., over the years. Research is paramount for a treatment/cure to be sanctioned.
"Clinical trials are the end point of a long, arduous and complicated process of scientific evidence generation, not the beginning." (Halifax Chronicle Herald article published Sept. 08/10 by Dr. Stan Kutcher- Sun Life Financial Chair in Adolescent Mental Health and director, WHO Collaborating Centre, IWK and Dalhousie University).
I will wait for clinical trials to be undertaken. The appropriate steps need to be taken before touting the CCSVI as a treatment/cure.
Those old enough will remember the tragic Thalidomide fiasco (NO clinical trials) that caused birth defects in the unborn. Had clinical trials been conducted, the drug would have never made it to market.
Let’s not make the same error regarding CCSVI. and let's not write off the MS Society!
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ReplyDeleteHi Maryann,
ReplyDeleteThe rest of us want clinical trials to begin, as well, so it's not clear to me how this situation compares in any way to the Thalidomide fiasco. With regard to the MSSC, I don't know, overall, how great an organization it is, but it appears fairly clear to me that the MSSC executives have used blocking tactics and have only done anything regarding CCSVI (small research grants to study side issues - apparently a delaying tactic) because their obstinacy was becoming so obvious.
Thalidomide did not have any 'clinical trials' done - the drug was OK'd and we all know what happened.
ReplyDeleteThere are a number of steps to investigate before a drug/procedure goes to a 'clinical trial'. I would suggest these are in the works but it takes time before results are in.
People leaving the country for an unproven treatment is scary.
I have found the MSSC to be responsible and no delaying tactics are at play. Leave the conspiracy theories out of the discussion.
Comparing Thalidomide and CCSVI treatment is akin to comparing apples and oranges. Angioplasty is very safely used all over the world every single day. If you are interested in real facts, no bias, I recommend anything Dr. Ashton Embry writes. He is a research scientist, has son with MS, and is one of the founders of direct-MS.org
ReplyDeleteAngioplasty is safely used - on arteries. Regarding research, neurologists and vascular surgeons are where I go for MS or CCSVI info, not a geologist.
ReplyDeleteActually, Maryann, it seems that venoplasty (and stenting), though not as common as angioplasty, is not that uncommon a procedure. There seems to be lots of literature on it from at least 1994. Those who would have you believe that "it's never been done" are misinformed or have ulterior motives. Of course, there are also the couple thousand patients treated for CCSVI, as well. Is it effective? Maybe, the jury is still out on that. But it certainly seems that there is much less risk than is associated with some of the drugs that are proposed.
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