Come mothers and fathers
Throughout the land
And don’t criticize
What you can’t understand
Your sons and your daughters
Are beyond your command
Your old road is rapidly agin’.
Please get out of the new one if you can’t lend your hand
For the times they are a-changin’.
The Annals of Neurology editorial and forthcoming Kahn article show several things very clearly:
1. People who live OFF of MS have a very different perspective on CCSVI than people who live WITH MS.
2. Those with a stake in the existing system are naturally going to be very skeptical of anything new, without necessarily being evil, especially something that completely upsets the apple cart and in essence, makes everything they have been telling patients wrong. Some of these people have a financial stake in opposing and delaying CCSVI.
3. Completely absent from the Annals editorial and the Khan, et alia article, Chronic Cerebrospinal Venous Insufficiency and Multiple Sclerosis is any consideration of:
* The fact that time is brain. Risk is not an absolute. It is relative. There are certainly risks from angioplasty and stenting cranial veins. But these risk have to be weighed against the known costs of doing nothing, and the awful side effects of existing treatments. I'll see your Holly Shear and raise you 10 Tysabri deaths.. (Anyone hear Dunn, Khan et alia shouting that patients should be PROTECTED from Tysabri? Didn't think so because this is not about evidence-based medicine. It is about defending turf.)
If they want to live up to their professional standards, they should be advocating rapid, large scale testing of CCSVI and the funding and creation of treatment trials. That is not what they are doing and Dylan has some advice for them:
Don’t stand in the doorway
Don’t block up the hall
For he that gets hurt
Will be he who has stalled
There’s a battle outside and it is ragin’.
It’ll soon shake your windows and rattle your walls
For the times they are a-changin’.
* Existing treatments carry a very heavy price: 1) they don't stop MS, 2) they have damaging side effects. The evidence so far is that CCSVI is the opposite on both counts.
It is completely disingenuous to tout the need for years of research.
You have to blind at this point to think there is any reason not to be doing CCSVI testing on a large scale to fully understand the link between CCSVI and MS.
And there is just no reason for not advocating and promoting large scale CCSVI clinical trials of treatment.
There is an enormous amount of medical practice that is based on very small clinical studies, especially when it comes to surgical procedures.
Finally, if Larry Steinman doesn't understand why there are very different standards for a relatively benign procedure such as angioplasty compared with drugs such as Tysabri, I think someone should write a script for him for Tysabri or any of the other DMDs. I think he will be able to better understand that difference in about 6 months.
[Edited to correct the number of Tysabri deaths from 23 to 31 as of January 21, 2010.]
Edited again to correct the number of reported deaths--10, not cases of PML--31--from the February 5, 2010 FDA Safety Announcement and to drop the snide comments re: Larry Steinman and Tysabri in light of Marc's comments.
"Since July 2006 (when marketing resumed) through January 21, 2010, there have been 31 confirmed cases of PML worldwide in patients using Tysabri. Of these 31 case reports, 10 were from patients in the U.S. As of January 21, 2010, eight patients have died."