damn

I get the logic behind having MRIs, but I don't have to like them! :)

Time to visit the cactus

I have my annual neurologist appointment tomorrow.

Once I touch my nose with my eyes closed, walk a straight line, and do some reflex testing (almost kicked him where the sun doesn't shine one - geez don't stand in front of me and whack my knee!), I plan on asking him what his thoughts are on CCSVI. I've always liked my neuro, so I'm a bit nervous that he'll shut me down. I'm not looking for someone to say "yes, I believe this is 100% useful and will completely prevent further damage to your nervous system." I just want to know that he's listening closely to the ongoing conversation on the topic. I know that he has sent patients for MRV testing in the past, so we'll see how it goes.

I'm strangely comforted that this man keeps a variety of cactus plants in his office. I like that there aren't frilly plants or pastel paintings meant to put me at ease. I like directness. My neuro is direct. He's a cactus.

Semi-related, is it crazy that my biggest fear is he'll suggest another MRI? Yep, brain and spine could have more damage, but that damn box kills me. I watched the rescue of the Chilean miners with one eye closed whenever they showed shots of the men underground. I don't like elevators or tunnels. MRI machines are not my friends.

As my appointment approaches, I always take time to reflect on the past year. I spent a few months this winter with electric legs whenever I worked out and looked down. I've started feeling the dreaded fatigue now and then (not often, touch wood). But, all in all, I've been very fortunate so far. Sure, MS sucks. I have frustrated moments and can't help but worry over my future, but my body's path is not set in stone and I do what I can to take care of it.

I'm a technology nerd, a lover of the great outdoors, an amateur photographer with bad horizon lines, and a writer of bad poetry...but, that's it.

I'll keep on top of all areas of research, not just CCSVI, but I will never take on the role of an MS patient.

On second thought...

Rather than do all of the leg work behind the conflicts of interest at play in politics (I am, after all, mid-30s...and that could take forever), I figured I'd focus on the positive.

So, the good:

1. New conservative provincial leadership in the works. Okay, it's not hard to tell that I am a die-hard left-leaner with socialist tendencies, but in this case our Tory premier-elect has said he will push the provincial government to create a $500,000 fund to help those seeking CCSVI treatment. In the long run, that may not seem like much, but it's more than any other province has promised so far. So, as scary as it may be for me, I welcome our new alien overlords.

2. The MS Society, despite being morons throughout some of this, is setting aside $1,000,000 for a clinical trial of CSVI treatment.

3. I have fantastic people in my life. Truly. Interested and informed and always willing to tell me when I talk about this stuff too much. :) I am very fortunate.

All in all, good news.

P.S. The CCSVI Alliance website has great information for the uninformed.

P.P.S. The CCSVI in Multiple Sclerosis group on Facebook has done great research into the path I was headed down - the conflicts of interest behind the CIHR decision.

Conflict of interest, come on down!

Canadians with MS want choices. The Canadian Institutes of Health Research, by not funding studies into CCSVI, has effectively offered none. Zip. Zero.

It's no shock to anyone that many of the doctors on the CIHR's panel of experts found themselves smack dab in the middle of conflicts of interest that they chose to ignore. Let's see some highlights, shall we? Don't worry, no slander here - this is all public knowledge and sourced.

Now, the first doc on the list isn't on the panel of experts, but it would be a vast oversight to skip him.

Introducing Dr. Alain Beaudet, President of Canadian Institutes of Health Research. Dr. Beaudet served as CEO of Fonds de La Recherche en Santé du Québec (FRSQ) from 2004-2008 [1]. FRSQ is a research funding agency whose largest parter is Pfizer [2]. Beaudeat appointed the vice-president of Pfizer Canada to the CIHR's governing council. Okay, call me crazy, but isn't that just...bizarre? Interestingly, there's a nice little snippet in an article called "Governance of conflicts of interest in postmarking surveillance research and the Canadian Drug Safety and Effectiveness Network" [3] on this point:

The appointment of Dr. Bernard Prigent, vice-president of Pfizer Canada, to CIHR’s governing Council—the first pharmaceutical representative to be so appointed (25–29 article's citations, ignore)—and statements by CIHR president Dr. Alain Beaudet in the context of this appointment, emphasizing the need to intensify collaboration and even to align CIHR’s “agenda” and “vision” with the pharmaceutical industry,(30) do raise the question whether CIHR remains sufficiently independent from industry to operate the DSEN.

[I started bolding the important parts there, but it became illegible]

Let's connect a few dots here. This report suggests that CIHR may not be sufficiently independent from the pharmaceutical industry to operate the national Drug Safety and Effectiveness Network. So, whose interests are being served by a board so closely linked with one of the largest drug companies in the world? Is there a shot in hell of Canada even looking at an alternative to drugs? Profitability for treating this disease remains sky high while profitability for stopping it is not.

Dr. Prigent, the Pfizer man who was appointed to CIHR's governing council…well, it turns out he's a registered lobbyist for Pfizer [4]. His position is to sway CIHR and other research spending programs. So, now he can lobby himself! Brilliant. [see also, 5]

Who's up next?

Maybe Dr. V. Wee Yong. Ooookay. Shotgun. Barrel o'fish. Coming soon...

1. http://www.cihr-irsc.gc.ca/e/10308.html

2. http://www.frsq.gouv.qc.ca/en/financement/Programmes_2009_2010/s17_fiche.shtml

3. http://www.openmedicine.ca/article/download/371/337 [PDF format]

4. https://ocl-cal.gc.ca/app/secure/orl/lrrs/do/_ls70_ls75_ls62_ls6c_ls69_ls63_ls53_ls75_ls6d_ls6d_ls61_ls72_ls79?_ls72_ls65_ls67_ls44_ls65_ls63=600939&_ls73_ls4d_ls64_ls4b_ls79=1265035844584&_ls6c_ls61_ls6e_ls67_ls75_ls61_ls67_ls65=_ls65_ls6e_ls5f_ls43_ls41&_STRTG3=tr

5. http://www.thecoast.ca/halifax/bernard-prijent-pfizers-inside-man/Content?oid=1503474

Oh, ffs.

Of course.

An expert group has recommended that our nation not fund clinical trials for CCSVI treatment.

We are the "wait and see" country, after all...why would I expect anything else? Rather than put our own studies into place, we'll just sit back and analyze everyone else's studies. Makes sense, right? Clearly, if we consider those studies suspect, the best thing to do is sit on our asses and inspect them rather than perform our own. That's my general policy too. I suspect my supper hasn't been made to my liking. I'm not sure how it will taste and I didn't see it being made. So, I'll sit, starve and poke it with my fork rather than go make myself an effing sandwich.

All of this despite Canadians clearly indicating in an Angus Reid opinion poll* (Dec 7 & Dec 10, 2009) involving a random survey of adult Canadians, that they...that we want more money spent on medical research.

Here's the gist on trial rejection from the CBC:

Experts urge rejection of MS therapy trial

Canada should not fund a clinical trial of the so-called liberation therapy for multiple sclerosis, an expert group has recommended.

The Canadian Institutes of Health Research and the MS Society of Canada said Tuesday in Ottawa that their group of international experts met last week to discuss the latest findings on the theory proposed by Italian doctor Paolo Zamboni.

The working group unanimously recommended against supporting a clinical trial in Canada at this type, CIHR President Dr. Alain Beaudet said.

Beaudet informed Health Minister Leona Aglukkaq about the group's recommendations. She plans to address reporters on Wednesday.

Chronic cerebrospinal venous insufficiency, or CCSVI, is a chronic problem in which blood from the brain has difficulty returning to the heart.

Zamboni believes multiple sclerosis is caused by a narrowing or "stenosis" in the veins that drain the brain that can be corrected by using balloons to open up veins.

Some Canadians have gone overseas to seek the experimental treatment.

Full article here:

http://www.cbc.ca/health/story/2010/08/31/ms-ccsvi-clinical-trial.html

*http://www.ctv.ca/CTVNews/TopStories/20100118/research_survey_100118/ Canadians want more money spent on medical research

If this is placebo...

I'll take two.

30-year old Calgary woman with MS goes from walking with a cane to training for a 10km race after having CCSVI treatment in Germany.

http://www.torontosun.com/life/healthandfitness/2010/08/13/15012086.html

Hello to the Prairies!

Okay, I'll admit it: before this week I knew very little about Canada's fair province of Saskatchewan. I heard a few Moose Jaw tales an old boyfriend would tell me over the phone when he was living there. I can tell you what sport the Roughriders play, name the capital and three or four of the larger cities, tell you that the license plates read, "Land of Living Skies," but my actual Saskatchewan knowledge is...well, let's face it - non-existent. I'm an island girl, what can I say?

But, lo' and behold, Saskatchewan's premier, Brad Wall, has been changing my take. I'm seeing Saskatchewan in a whole new light! Premier Wall announced this week that his province will fund Canada's first clinical trials of CCSVI therapy and is urging fellow premiers to follow suit.

Now if only we could get the federal government to take some action rather than sit at endless roundtable discussions. Where are you, Health Minister Aglukkaq?