CIHR makes recommendations on Canadian MS research priorities

While I disagree with the statement "there is overwhelming lack of scientific evidence on the safety and efficacy of the procedure, or even that there is any link between blocked veins and MS", (No evidence of a link?  What happened to the Buffalo study and all of the other clinical evidence since then???), I see that the actual CIHR press release is not nearly as negative as the CBC made it out to be: http://www.cihr-irsc.gc.ca/e/42382.html.  Take a deep breath and chill, folks... it's not good news, for sure, but the CBC story wasn't that clearly written and the setback isn't quite as bad as it first seemed.  Still, that "overwhelming lack of evidence" statement seems pretty stupid.

Experts urge rejection of MS therapy trial

Oh, geez, just when things looked good for national clinical trials (even if they would be years away), this group of says otherwise:

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 time, CIHR President Dr. Alain Beaudet said.

It looks like MSers still have a long fight on their hands. Read more at: http://www.cbc.ca/health/story/2010/08/31/ms-ccsvi-clinical-trial.html#ixzz0yD5Uq18w.

Oh, and there seems to be a lively discussion going on in the comments section under the story... the part of it I've seen seems mostly civilized.

Are MS Societies working for MSers?

In this article, Ashton Embry claims that "the national MS societies do not have the best interests of persons with MS as their highest priority": http://www.facebook.com/notes/direct-ms/why-national-ms-societies-are-not-acting-in-the-best-interests-of-persons-with-m/149801465049361.  I would like to think that Ashton is overstating the case against MS Societies, but recent actions of some higher-ups in the Canadian MS Society seem to bear out at least some of his assertions.

Double Standards for Access to Care?

As a direct follow-up on my previous posting, here's the story of a Canadian cardiologist who sees our medical system's reticence to do something about CCSVI as hypocritical: http://www.ccsvi.mx/double-standard-ccsvi.  If neurologists are recommending that patent foramen ovale (PFO) be treated despite the lack of clinical trials because it just makes common sense that potential benefits outweigh potential risks, why in the world wouldn't that be true for CCSVI treatment?  Thanks to Shelley for digging this up, along with others she found while I was on vacation.

Trial for MS 'liberation' therapy years away: Researcher

Despite the promise of funding for clinical trials by some provinces, it will likely be years before they begin to do them in Canada: http://www.vancouversun.com/health/Researcher+cautions+trial+liberation+therapy+years+away/3442470/story.html#ixzz0xfdeLyLu.  Then, assuming the trials are successful in identifying if/how CCSVI causes MS symptoms, how many more years will it be before our medical system gets geared up to treat the estimated 70,000 Canadians who now have MS along with the others who will have been diagnosed by then?

While it's understandable that the provinces wish to wait for more solid evidence before agreeing to Medicare coverage of CCSVI treatment for reasons of its possible impact on MS, why shouldn't assessment of MSers (who are now known to be likely to have CCSVI) and the treatment of blood flow abnormalities not be covered?   At the very least, why not give Canadians the opportunity to do this as a precautionary measure at their own cost?

Negative liberation stories

An anonymous commenter says "Funny that you only speak of the positive stories about ccsvi, how about those who had the procedure and it did not work!" and "When you speak so highly of ccsvi & the fantastic outcomes you make those who did have it done and it did not work feel like CRAP!".  Of course, he/she meant speaking highly of CCSVI treatment.  I would respond to those statements by saying that:

1. I have reported people who have seen no change on this blog.  I wouldn't be surprised if a lot of the people who have seen no change are not reporting, but there is not much I can do about that and, as I mention below, I think it is appropriate for them to take a "wait and see" attitude because no improvements are not necessarily a bad thing at all.
2. I have also talked about people having too high expectations, though most of my discussions with such people have been in private messages.  I feel good about the small changes I've seen, but if I wanted to feel bad, all I'd have to do is focus on the stories of huge improvements a few people have reported.
3. Nothing happening is not necessarily bad news at all. When I had my treatment, I went into it saying that NOTHING happening (no improvement, but no worsening) would be a big win for me.  It is unfortunate that some people have unrealistic expectations based on anecdotes from a few lucky MSers, but since all we have are anecdotes and nobody in our health system is doing a survey of results (why not?!?), I'm only guessing that good results are being "over-reported".

Back from vacation

I'm just back from 10 days vacation visiting family in Manitoba, during which time I passed thye four month mark since my treatment.  There are still no new symptom changes to report.  I did use the cane for the first time in several months, but that was to get me through airports.  While I was around home I met an MSer who had been to Egypt for the treatment two months ago (venoplasty only), and like me he has had some improvements, but nothing dramatic.

Nova Scotia Opposition backs CCSVI research funding

More pressure - finally a little in the Maritimes: http://thechronicleherald.ca/NovaScotia/1197408.html.  Thanks for the tip, Shelley.

More detail on Manitoba's approach

Here is a nice article by Dr, Lorne Brandes, congratulating Manitoba's health minister, Theresa Oswald, on her support for a national randomized clinical trial of CCSVI treatment: http://healthblog.ctv.ca/post/The-CCSVI-train-rolls-through-Manitoba-Whoe28099s-next.aspx.  Note that it must have been written yesterday, because he just got news about Quebec's participation as he completed the article.

Quebec and Manitoba want clinical trials, as well

It looks like more provinces are buying into the idea of a pan-Canadian clinical trial: http://www.theglobeandmail.com/news/national/quebec/quebec-ready-to-collaborate-on-controversial-ms-procedure/article1676369/.  The story gives too much credence to the silly Swedish and German research that "disproves" the existence of CCSVI, and talks about the MS community being "divided on the issue, with many saying more studies are needed before the treatment can be tested on humans"... funny, I haven't heard too many folks in the MS community saying that!

Alberta committee to probe MS procedures

It will be interesting to see what kinds of experts will be on this committee: http://www.edmontonsun.com/news/alberta/2010/08/16/15043201.html... and I hope the whole process doesn't just end up being a delaying tactic.

I still see no movement at all in the Atlantic provinces, though... in fact, I heard a rumour that health professionals with expertise in CCSVI have had inquiries and requests for training from all parts of the country EXCEPT the Maritimes.  Now I know that there are a lot of innovative people (including some in the health sector) in this part of the country, so what is it about the health system here that nobody in it seems to be even expressing interest in this issue?

More good news from Melissa

My friend Melissa of Moncton continues to see improvements in her symptoms since her liberation in mid-July:
http://timestranscript.canadaeast.com/news/article/1176031.  What a good news story!

Running again after liberation

This is a good, balanced story about one Calgary woman who was liberated in Frankfurt: http://chealth.canoe.ca/channel_health_news_details.asp?news_id=31196&news_channel_id=135&channel_id=135

Tough Day

Did a half hour  of biking at noon - uphill and against the wind both ways, it felt like!  :-)  Then hefted a five-gallon drum of roof sealant up a ladder - then down again because the small print said it should only be used on a flat roof - Geez!  I'm pooped!

Letter calling for CCSVI Testing and Treatment in Canada

Here is a letter sent by a "liberata", Verna Mang, to newspapers all across Canada: http://www.travelpod.com/travel-blog-entries/vmang/1/1281449230/tpod.html.  It's well written... I wonder how many newspapers will publish it?

Yes, Barrie for the follow-up!

I'll be going to Barrie for my follow-up, not to Katowice.  That certainly will save me lots of time and money... including all that my wife is now NOT going to be able to spend on amber, as she had intended. :-)

Going to Barrie?

Since one of my friends who has been to Poland and another who is soon going have both organized follow-ups in Dr. McDonald's clinic in Barrie, Ontario, I decided to try it myself today.  It would be a lot cheaper and easier than going to Poland, plus I'm hoping that they'll start doing treatments some day (in case I need to be re-done). I've already had a response and it looks like I might be able to get an appointment for October!  Thanks to Louis and Melissa for putting me on to this.

Presentation went well

My presentation in Campbellton went well despite my rusty French.  The room was packed (over 80 people) and they were a great audience: very attentive and respectful.  There were good questions and ideas from the audience after the presentation, and then Louis (who had just returned from his CCSVI diagnosis in Barrie and is on the cusp of making a decision to go to Poland) also gave a good extemporare talk on his own situation.  Congratulations to the organizers - a lot of MSers are now better informed.

One thing I should have talked about (though it came out a bit in the discussions) is the importance of working together as a group to put pressure on the political and medical systems to make sure CCSVI diagnosis and (if appropriate) treatment is available to all Canadians in Canada.  We need teams of medical professionals - GPs, vascular specialists, interventional radiologists AND neurologists - working together to combat MS.

Posted on TiMS: 3+ months after liberation

I was liberated just over three months ago and in this last month I've had no noticeable improvements, but no regression either. My energy is still way up and continue to have more strength in my left arm. My mobility and balance are still a bit better - I haven't used a cane in two months now. My manual dexterity is still better: I still wear shirts with buttons on a regular basis again, and only have problems with dexterity or mobility if I'm really tired from exercising or from walking around (or having too much wine).

I'm at the cottage now for my vacation. Besides doing lots of repairs around the place, I've gone out sailing my little Laser, something I didn't think I'd ever be able to do again. My weaker left side still causes me to doubt how far I can push it, so I wouldn't go sailing in storms like I used to do. If I feel good enough to start sailing in storms again, you'll be the first to know!

Premiers to Discuss CCSVI Treatment

It looks like one Atlantic Premier is open to participating in Saskatchewan's clinical trials of CCSVI treatment when all the Canadian premiers meet later this week: http://www.cbc.ca/health/story/2010/08/02/pei-ms-treatment-584.html.  Hats off to all those folks everywhere who have worked hard to bring the issue to the attention of our politicians... you ARE making a difference.