Fatigue again?

For the first time since being liberated, I've started to feel tired again in the afternoon and early evening... not as much as the worst of times before the procedure, but enough to make me realize how much better things had gotten.  I wonder if it's restenosis of the right jugular, the one that wasn't stented?  I guess I'll find out at my follow-up in Barrie in a few weeks.

Best place to get CCSVI Testing & Procedure done

Sharda, that depends upon your location and situation.  Send me an e-mail and we can discuss the alternatives.

Your Testimonials - Doing Double Duty

Here is a different request from my (very active) friend Shelley, this time for testimonials from Canadians who have had been "liberated":

If you could put out a request on your blog for anyone interested in providing me with a CCSVI treatment testimonial and/or a statement or a comment that anyone would like relayed to the MS Society board members, I will happily bring along such documentation with me on September 20th when I attend the first CCSVI Working Group meeting as a CCSVI advocate. They can email me at shelley@zingsphere.com .

As explained to me, the CCSVI Working Group will be comprised of 4 CCSVI advocates, 4 members of the National Board of Directors, and 4 representatives of the medical community (an IR, a vascular surgeon, a neurologist and one other doctor). I do not know the names of any of the other advocates nor do I know which physicians will be partaking in this working group.

Mark Lane has most graciously agreed to share with me testimonials he has received but will not be able to do so until after September 15th which won’t leave a lot of time since I will be leaving on the 19th for Toronto. I told him that I would ask you to put out this request on your blog and then he and I can go through our respective lists and whosever testimonial that I do not have which he does, he will then ask permission of that person to share with me.

In an email I received from Deanna Groetzinger, VP – Government Relations and Policy of the MS Society, she explains the CCSVI Working Group as follows: “The working group has been formed to provide advice and recommendations concerning chronic cerebro-spinal venous insufficiency with the goal of positively impacting the Multiple Sclerosis Society of Canada’s approach to research, treatment and advocacy activities. The working group is to identify issues and provide advice and recommendations to the National Board relating to the monitoring of evolving peer-reviewed, scientific evidence regarding CCSVI and treatment, including the progress of MS Society CCSVI clinical and other CCSVI studies; the position of the MS Society with regard to CCSVI especially concerning guidance to people with MS; the type of information and approach the MS Society shall take regarding CCSVI vis-à-vis the federal and provincial governments and professional associations of physicians.”

Thanks Ted!

Note that, even if you have already replied to a similar request from Mark Lane (for another purpose), please send a copy to Shelley now so that she has time to prepare the information for the first meeting.

Petitition to Minister Leona Aglukkaq

My friend Shelley has asked for our help to get 10,000 signatures for the following petition:

The Liberation Treatment is potentially a ground breaking discovery for the treatment of Multiple Sclerosis. In November 2009, Italian researcher Dr. Paolo Zamboni, made headlines worldwide with his study of  chronic cerebro-spinal venous insufficiency (CCSVI). The MS community responded with great hope, excitement and a call for immediate action.   Unfortunately, on Tuesday August 31 2010 the Canadian government decided not to fund a clinical trial of the Liberation Treatment in Canada.  As a Canadian citizen and once a supporter of the MS society, I wish to express my interest in seeing our country act as a leader in helping find a cure for Multiple Sclerosis.  This is an alternative therapy, that has inspired hundreds of thousands of people afflicted with the disease, all of whom deserve the opportunity to pursue that hope.

Go to http://www.thepetitionsite.com/1/help-cure-ms/ if you wish to sign the petition.  I signed it with a comment indicating that I believed the decision was based upon a poor recommendation from "experts" with no knowledge of CCSVI, many of whom have conflicts of interest.

So I think I can dance... sort of

Tonight I attended a Haitian wedding (in Charlo, New Brunswick... go figure).  Though I tried to dance a waltz (unsuccessfully) at a Ukrainian anniversary last week, tonight I danced a merengue with my wife... well, sort of... as much as I could do with a draggy left foot.  Still, it was the first dancing I've done in two years. Unfortunately, my wife still hasn't learned to keep her toes from under my feet, but I'm sure she'll learn some day... :-)

Bottom line so far

Mark Lane (mark@marklane.ca) is collecting CCSVI treatment testimonials for presentation to a meeting of Health Ministers in Saint John's later this month.  I sent him a page of impacts (based upon my TiMS tracking thread) and ended with this:

Bottom line so far:  My quality of life has improved significantly since I had the procedure.  Last fall, there were many things (sailing, kayaking, biking) that my wife and I thought we would never be able to do again together.  The way things were progressing, it looked like I would be in a wheelchair this year and that I would have to retire from teaching (our old campus is NOT wheelchair-friendly, and the fatigue would have stopped me in any case).  But I am teaching again this year, and am re-thinking my retirement plans.

Four months in and no more improvements

No more improvements since June 29th.  In fact, my mobility sometimes seems to have regressed, though with the day-to-day and hour-to-hour changes that I have, it's really hard to tell.  I still don't use a cane (except in airports), so it can't have regressed much.

Conflict of Interest in CIHR

Thanks to Joan Beal, here is some interesting information that may shed some light on CIHR's recommendation to, basically, do nothing about clinical trials for CCSVI treatment in Canada: http://www.facebook.com/pages/CCSVI-in-Multiple-Sclerosis/110796282297#!/notes/ccsvi-in-multiple-sclerosis/dr-alain-beaudet-and-the-pharmaceutical-industy-what-you-need-to-know/430286607210.  She makes a good case for concern that some of the head folks in CIHR are a little too cozy with major drug companies.  In that light, the CIHR recommendation seems to make more sense in a sinister kind of way... certainly it would appear to constitute a conflict of interest.  This would make a great story for a muckraker... any journalists out there that aren't afraid to take this on?

CCSVI Presentation by Dr. Torrance Andrews

This is a very good video (in two parts) that explains CCSVI and why we should be doing "liberation" treatments here now: http://www.youtube.com/watch?v=uAlbdW2aiYs&feature=channel.  It also provides further information concerning Dr. Zamboni's study that I didn't know or forgot: it was a blinded study, and about 300 people were involved, not just the 65 that is so often quoted!  Too bad the idiots on the CIHR "experts" panel didn't bother to do enough research to get their facts straight!  My guess is that they were "sold" their consensus and weren't given time to check the facts.  Even so, it doesn't say much for their scientific integrity that they allowed themselves to go along with that.  Shame on them!

MS therapy trial has N.L. minister's support

So despite the recommendations of the CIHR's "expert panel", the health minister for Newfoundland and Labrador feels that there is too much anecdotal evidence of the value of "liberation" to delay clinical trials: http://www.cbc.ca/canada/newfoundland-labrador/story/2010/09/01/kennedy-ms-clinical-trials-901.html#ixzz0yHOv48Oi

As well, in the same story, a local MS Society of Canada volunteer has decided that he can no longer support that group:

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."

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?