Another small improvement

One of the tests that the physiotherapist did for me earlier this week was to test my grip strength.  She found that my grip strength in both hands had improved significantly since the last time I was tested.  Since the last time I was tested was in June, it's hard to say when the improvement actually occurred.

MS SOCIETY`S PRIORITIES ???

Here's a sobering perspective based upon publicly-available information that Chris Alkenbrack has dug up: see the Facebook report on MSSC expenses.

Reminder: CCSVI Tracking

Have you checked out www.ccsvi-tracking.com lately?  The results of almost 400 liberation treatments are now reported there, and it's possible to view monthly results for many kinds of categories of patient (gender, type of MS, age, etc.).  And if you've been treated for CCSVI but haven't entered your data yet, what's stopping you?  Given that governments are doing very little to follow up on the results of treatments, we have to do it ourselves.  Also, untreated MSers are depending on the information to make personal decisions... so they need to know results from everyone, not just those who've had big improvements.

Although we don't know if the self-reporting people are statistically skewed towards those who have had positive experiences (which is quite possible if not likely), it certainly appears that a high percentage of liberated people have seen improvements, especially with regards to quality of life, fatigue and mobility measures.

Enough circumstantial evidence?

While prosecutors would always like conclusive evidence, they are quite willing to go to trial if there is enough circumstantial evidence.  Given all the evidence we are seeing with respect to the relief of symptoms seen by people who have been "liberated", isn't it time for us to go to trial or, in this case, clinical trials?  Come on, medical professionals and governments, get your acts together and start doing your jobs!

Women affected by MS twice as much as men: A genetic reason?

Coincidentally (?), women are affected by chronic venous disease twice as often, as well: Facebook site reports on findings in studies.

Ukrainian Christmas

Although a good part of the work was done by my daughter and her boyfriend visiting from New Zealand and my son, I helped a lot with the cooking preparation (especially the perogies) for the big Ukrainian Christmas feast we had last night.  My hands are still not great for making perogies, but I did take the lead in making them, something else I didn't think I'd be able to do again until I was "liberated"

CIHR Decision Poorly Made

Spurred on by my last post, my friend Eric has reminded me of a previous commentary made by two doctors in Open Medicine, an on-line medical journal, about some of the mistakes made in the CIHR recommendations to the federal government concerning the CCSVI controversy: http://www.openmedicine.ca/article/view/443/366

Canada's MS patients are owed an explanation - Yes!

Thanks to Shelley for alerting me to this strongly-worded Op-Ed piece (written by two liberal MPs) that is in today`s Ottawa Citizen:

Canada's MS patients are owed an explanation

By Ujjal Dosanjh And Kirsty Duncan*

The government of Canada is failing multiple sclerosis patients on numerous fronts. In August, the Canadian Institutes of Health Research, in collaboration with the Multiple Sclerosis Society of Canada (MSSC), convened a "meeting of top researchers ... with a special emphasis on neurovascular issues including the recently proposed condition called CCSVI."

Sadly, it was an expert group with no experts in the imaging/treatment of chronic, cerebrospinal venous insufficiency (CCSVI). Leaders, such as Dr. Sandy McDonald -- the only Canadian to be trained by liberation treatment pioneer Dr. Paolo Zamboni, and to have performed the procedure here in Canada -- were not consulted. Moreover, there was no inclusion of international experts in CCSVI/liberation treatment, no data presented at international scientific conferences, and no site visits to labs and operating theatres, but rather just blind acceptance of a handful of studies, including two which had been accepted in an astounding six weeks. After the secret meeting, we were told, incredibly, that CCSVI/liberation experts were not included for fear of biasing the discussion; surely, disregarding experts is a dangerous precedent. Yet researchers, who had vehemently spoken out against the liberation procedure, were included in the group.

A new "scientific expert working group" has been appointed, but sadly suffers the same flaws as the initial group -- namely, no experts, no experience, and many undeclared conflicts of interests. The new group is to analyse interim and final results from seven Canadian and U.S. MS Societies -- funded studies, for which we already have answers.

Why is the government waiting for results when more than 3,500 procedures have been performed in more than 50 countries; when Bulgaria, Canada, Italy, Kuwait, Poland, and the United States report that 87 to 90 per cent of MS patients show one or more venous abnormalities in MRIs and ultrasounds, and 97 per cent when angiography is done?

Canadian MS patients deserve evidence-based medical practices. But how can this right be realized when their government refuses to collect any evidence? We have been calling for the collection of evidence since the spring, through clinical trials, and a registry.

It is more than unfortunate that Canadian patients, who have been travelling overseas since January 2010, have not had their results tracked, for example, at one month, three months, and six months after treatment. One Canadian neurologist, who had the liberation procedure, said to me, "if we had collected the evidence in a registry for the last many months, would we still be calling these anecdotal stories?"

Finally, like many MS patients, we are frustrated with the government, and want an investigation into how this file was handled so badly: how special interests co-opted science; how an organization that was supposed to steadfastly advocate for MS patients flip-flopped on its position; how process was used not to do science; how conflicts of interests went undeclared; how a pioneering surgeon had to risk his reputation; how MS patients were forced to fight the system; and how the minister repeatedly failed to advocate on behalf of suffering Canadians, particularly with regard to followup care -- especially when we began raising the issue in July with officials?

And ultimately, who was responsible for repeatedly failing to take leadership, and who must be held accountable for the abject abdication of responsibility?

*Ujjal Dosanjh is the health critic for the Official Opposition, member of Parliament for Vancouver South, and former premier of British Columbia. Dr. Kirsty Duncan is the member of Parliament for Etobicoke North.

Eva Marsh

I also received this e-mail today:

Dear Ted Robak

I read this article sharing your experience and quoting your comments with great interest.

My symptoms began 58 years ago the summer I was 8 years old, and were dismissed as just my imagination, but paralysis from the neck down in 1967 led to quick diagnosis and I was told to get my affairs in order, I didn't have long.

However, what I found in research then and in the years since, tells a different story and I have used this information to recover from all the damage of 11 bouts of paralysis, all described in my book, Black Patent Shoes Dancing With MS, copyright 1989.

I invite you to scan my website www.evamarsh.net with Zamboni commentary that I posted after spending the summer doing an in depth literature review. A huge body of research has been done and ignored for the past 100 years.

Happy New Year

Eva Marsh

On her website, Eva has also written some commentary concerning the CCSVI theory: http://www.evamarsh.net/LiberationProcedureCommentary.htm.  It looks as though I'm going to have to buy myself some Ukrainian Christmas presents: Eva's and Dr. Flanagan's books.  If any of my readers have already started researching either of these, perhaps you could provide me (and my other readers) with a book review from the point of view of a person with MS.

Upright Doctor

Here is an e-mail I received from a friend who I met when I was liberated in Katowice last April:

Hi Ted,

Hope you and your family had a great Christmas and New Year. Since our liberation in Katowice back in April 2010, I too have had improvements very similar to yourself and hope that the disease progress has been halted. The reason for this brief email is that I have been following your blog for many months now and find it very helpful to read your informative articles. The one that caught my immediate attention was the recent article on the connection between CCSVI and Upper Cervical care. There is a thread on TIMS which you are probably aware of but if not have a look at http://www.thisisms.com/ftopict-14005.html. I had  a serious motor cycle accident back in my wilder days and always believed this has led to my current situation but couldn't get any neurologist to take it seriously. Although the hospital fixed my broken limbs they never checked my neck for any damage. To be fair to them I didn't complain at the time of any issues with the upper cervical areas I was just glad to get my leg and arm fixed. After reading lots of stories on the web, there does seem to be a common thread with accidents and the onset of MS in quite a lot of people that have suffered a physical trauma. Dr. Flanagan's book is definitely a good read and has several chapters dedicated to MS and his theories do make a lot of sense. I am now on the next part of my MS journey to investigate this avenue more thoroughly. If you get any useful info on this subject please send it in my direction as well.

Have a great 2011 and I hope you keep the improvements already gained.

Best wishes to you and your wife,

Tony

So, more anecdotal evidence that trauma is somehow related to the onset of MS, and that Dr. Flanagan may be on to something in his book.