Can Myelin be Repaired?

It would be an exciting development for MSers if this really pans out: http://exm.nr/oJUL6q.

TAMSI: Alberta makes a move

This is not really new, but this is the first time I've seen the details of the Alberta study following up on MSers who have been “liberated”: https://tamsi.ca/survey/.  It looks like it might be quite comprehensive and worthwhile if it`s done well... anybody know any Albertans who've done the survey and could comment on it?

Zamboni frustrated by unscientific scientists

In a recent article in MedScape discussing the OPINION of Dr. Compston that new genes found in MS implicate the immune system only, and preclude a vascular connection,  Medscape asks Dr. Zamboni for his opinion on this new research and the recently published negative review by Dr. Bagert: Facebook page.

Also from Dr. Zamboni - an older paper

This is heavier reading in an older paper (that I hadn't seen before), but it shows some of their earlier thinking, and the conclusions are fairly understandable: http://phleb.rsmjournals.com/cgi/reprint/25/6/269.

Exciting research results from Dr. Zamboni

Despite the problems with the English language and the fact that the group being studied was small, the results seem to demonstrate that CCSVI treatment is safe and has a significant effect on objective measures of MS progression: new Zamboni research results.  Note that the actual paper referenced in that message is not properly linked... here is the proper link: http://www.ejves.com/article/S1078-5884%2811%2900201-2/abstract.

Study disputes Zamboni theory of multiple sclerosis

This large study seems to show that the incidence of MS is highly correlated with genetic markers for autoimmune diseases, in their eyes throwing doubt on a vascular cause for MS initiation or symptoms: Globe and Mail article.  However, the actual findings seem way too preliminary (and complicated) to say, as one of the researchers does, that this "proves" that MS is strictly an autoimmune disease.

And here is the discussion concerning the implications on TiMS: TiMS discussion.

Story in the Winnipeg Free Press

Except for a few errors, this is well researched and certainly well written: Winnipeg Free Press article.  It gives a fair overview of the CCSVI situation, but does it from a very personal viewpoint.

Letter to Senators and New Brunswick MPs

This is the message I just sent to our politicians:

My name is Ted Robak.  I live in New Brunswick where I was diagnosed with multiple sclerosis in 2004.  My physical condition had started to deteriorate rapidly to the point where, in the summer of 2009, most of my thoughts were about how the things I was still (barely) doing were probably the last time I would be doing them.  I was also resigned to the likelihood that I would soon have to stop working.  Then, upon returning from what we thought would be our last overseas trip together, my wife and found that we had been inundated with messages from people suggesting we watch the W5 program on CCSVI and its treatment.  After researching the theory, I decided to apply to be tested and treated for CCSVI in Poland, since there were no opportunities to even be tested in Canada at the time.  I was tested and treated at the end of April 2010, where they used angioplasty on my right jugular and placed a stent over a faulty valve in my left jugular vein.  I experienced the following improvements to my health as a result of that treatment:

• Fatigue: Before treatment, I would have to nap as often as four times a day.  I got tired just thinking about going to work or doing any kind of activity.  Now all that has disappeared.  I can work all day and rarely take a nap.
• Balance: My deteriorating mobility was due to my left side weakness, foot-drop, and my lack of balance.  While the other symptoms remain generally unchanged, my balance has improved dramatically, giving me significantly more mobility.
• Bladder function: This has improved greatly to the point that I no longer have to take medication for it.
• Strength: Though my left-side weakness (leg and hand) remains generally unchanged, that can be considered a good thing considering how quickly things were deteriorating before treatment.  That I did not see dramatic improvement in this regard is hardly surprising, since CCSVI treatment is not likely to undo existing neurological damage.

Since my treatment 15 months ago, I have had two follow-up tests, in Barrie, Ontario (September, 2010) and then Bangor, Maine (June, 2011).  In my last follow-up, it was seen that some of my blood-flow problems have returned, which is worrying since there is, as of yet, no treatment for CCSVI in Canada.  I hope I don’t start losing my new-found stamina and other improvements that have hugely changed my ability to be productive and enjoy life.  Since I was treated, my wife and I have stopped talking about all the things we’ll be doing for the last time, and I hope that we won’t be going back to a situation of relentlessly diminishing possibilities again.

All Canadians should have the opportunity to have their veins unobstructed, and their blood flowing freely.  We shouldn’t have to go overseas for this. 

Please support Senate Bill S-204. Clinical trials may not help me, but they should provide the information for future CCSVI sufferers.  What will help me and tens of thousands of Canadians right now is to allow MS sufferers to have recognized blood-flow problems to be treated in Canada, not turned away simply because they are MS patients. 

On vacation at our cottage

Back from London (a great trip) and a couple of days in PEI, now we're finally at the cottage on the Baie de Chaleur (or Restigouche River, depending on which map you're looking at). In between chores (mowing a jungle of a lawn, painting the deck and building some steps for a dangerous slope, planning the rebuilding of our seawall), we've even had a chance to relax.  Haven't been able to do much fiddling, though... after a day of work my left hand doesn't work all that well.

Fronting ghostwritten medical journal articles is fraud

Two law professors at the University of Toronto say that academics who put their names on medical journal articles actually written by drug industry writers should be charged with fraud: http://www.news.utoronto.ca/social-sciences-business-law/charge-academics-fronting-ghostwritten-medical-journal-articles-say-u-of-t-.html. This is so obvious, you wonder why it even needs to be said.