I don't have anything against them. But as Tom Lehrer said: If people cannot communicate, the least they can do is to shut up.
Deconstructing MS Ontario
Yesterday I received the Fall-Winter 2010 Volume 25 Issue 2 of MS ONTARIO. Of course the big news was the CCSVI projects. It was interesting to note that the letters MS are a registered trademark. Letters. A capitalized sequence of two letters with bars through them (broken nerves I guess) is intellectual property. I guess I should get out my SCRABBLE (R? TM? C?) dictionary and see what other two-letter sequences I can claim. My initials, perhaps?
Anyway, to the first page. Two CCSVI projects led by Ontario researchers is about Dr. Brenda Banwell and Dr. Carlos Torres investigating CCSVI and MS, so the caption says. The first paragraph is the obligatory mention of November 2009 and Dr. Z (the Italian one). Even here, the adjective used to describe the link between CCSVI and 'MS' is 'potential'. Well I don't need 2.4 millions to tell them it is not potential. I'll tell them, cheap. Like energy, it may have at one time been only potential. But now it has been neither created nor destroyed, but transformed into a very kinetic link. In fact, you might say it has a pulse. It has life's blood flowing through it. But it is to be investigated. It is in the minds of some, still suspect.
Then we get to the real meat and potatoes, how in June the announcement of the two Ontario studies are a response to the 'MS' community's hope, excitement and call for 'immediate action'. Did you call for that? They listened. Well, November to June, these things take time. To 'explore' the 'relationship'. Things are already seeming less skeptical, less entrenched.
Where are they housed? ONTARIO, of course. Dr. Banwell is going to see if kids with 'MS' have abnormal veins (CCSVI), and they say that she says it is key to adding depth to the adult studies. Depth? Let's be a little plainer. We are still trying to disprove that 'potential' link. "If this is true, it should be present in those who have the disease at a young age." says she. The author then fills out the paragraph with the bold statement that kids don't get high blood pressure.
The next paragraph gets to the heart of the matter. What is the cause, and what is the effect? Why? It is a key issue. In my own case, I care very deeply if MS is shown to be the effect, and not the cause. It makes a world of difference to insurance company and government bureaucrats. Why? Because of who they send checks to. That is a very territorial matter, and one that needs a lot of money spent on it.
A friend of mine is worried sick, and spends her days haunting the halls of a hospital because her son has been diagnosed with GBS. He is very sick. I think along the way somebody ought to give him a Doppler. Plasma will help, too (as it helps people with CCSVI). The blood gets stale and has bad stuff in it. It moves too slowly. But why GBS? I know, I am off on a tangent. But it's because I don't like coincidences. 1. Mom has CCSVI 2. Kevin (the son) had a birth defect, that resolved, which caused his neck to be stiff, bent forward, and to the side. This was very worrisome. He had physio that fixed it. 3. Kevin just got over a disease known to be the trigger for GBS, which has been extensively investigated by our own Dr. Zivadinov: EBV. He had a bad mono infection. 4. It is a demyelinating disease, similar to MS, only very much faster. He can't walk or do much of anything. He was to try out for University soccer this week. Too many coincidences. By far. Why do we care so much about whether neurologists learn venoplasty, and not instead about what *other* diseases are like CCSVI?
Back to the MS ONTARIO. "Dr. Banwell's work is just one piece of the CCSVI puzzle." (I must ask, why am I not puzzled?) It is a birth defect, or several. It takes different lengths of time to kill you. There is not now and will never be, a cure. OK? Got it? Certainly if I can understand it, these learned and socially involved people should be able to. But no. Dr. Torres will map out 'normal' variations in vein anatomy of the neck. I wish he'd take a look at Dr. Sclafani's collection. And mine. And Kevin's neck too. But no. We are proclaiming what is "normal", again to find out "if there is an association between the presence of venous blockages and MS." The language is interesting: microscopically conciliatory. "to confirm if". Writer unsure of position? "Confirm" and "if" don't really fit together very well.
They will use Doppler Ultrasound and MR venography with "contrast". They will also use MR to investigate brain iron and 'MS'. I wonder who will publish first? Oh, I forgot, Dr. Haacke already did. But Dr. Haacke and Dr. Zamboni are not neurologists. So what they say is suspect.
On to page 2.
Message from Yves and John (Savoie and Clifford)
Rehash of the CCSVI intro, refers back to identical material on front page, pats on the back and award mentions to key volunteers and a board member. Announcement of August 26 A&W promotion/partnering/fundraiser.
More mention of a 'cure'. Not much chance there. We vikings are too fertile.
Page 1 continued: more justification; Zamboni's work not blind enough again. But he used catheters and X-rays! Veins and collateral growth are easy to see that way. There is no substitute at reasonable cost! Plus you can balloon immediately. Don't let's bureaucratize these people to death!
Big display ads for A&W event.
Walking, reading, sponsoring, several different galas, the 17th annual end 'MS' gala, an article about everyday heroes, exemplary volunteers with nothing but good in their hearts and a lot of it, a guy who walked the Bruce trail, which I'd sell my soul to do, and the annual AGM, Sun., Apr. 3, 2011 Sheraton Gateway Hotel, Pearson Airport Terminal 3.
All I got to say to these people is, CCSVI is a condition which causes the symptoms 'associated with' 'MS'. These guys like referring to the 'association' so much you'd think they'd change their own name. It is most of the time congenital, a birth defect, which takes a long time to do its damage. Because of that, there will never be a cure. It's like e.e. cummings said, what you need is a 'birthproof safety-suit'. But some geniuses can help you with it. Liberation is a way out that must be tried before you give up.
Go ahead and raise funds. Have galas, walks, rides, kite flying, whatever. Just don't say I can't be Liberated because I have 'MS'.
Sharpen your pencils. Fall is coming (it's still August, but these things take time).
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience