This Is MS Multiple Sclerosis Community: Knowledge & Support

Cheer-
I sent the WSJ reporter an email whining about his CCSVI article. He did a great job on this newer MS article. Here's my latest email to him:

Wow! That new article and all its positive, happy tone makes me crazy! When I read your post Joan, I thought you meant they had reconsidered and wrote something more positive about CCSVI.
We will get there.

_________________
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.

Rose...by sharing your improvements here on-line and stating that CCSVI was real for you and treatment helped you- you benefit all MS patients. I don't think Dr. Dake would want anything more. (I'm pretty sure you wrote a letter in his support to Stanford already...that's something else you could do for him.)

I would only ask that you might consider going public, see if there is a local news outlet or local reporter interested in your story. The only way we can counteract the corporate media will be with thousands of personal stories of how CCSVI is diagnosed and treated. Blogging helps, too. Lew, wheelchairkamikazee, enjoying the ride, sammyjo...all have an internet presence and are getting notice.

bretzke....yeah, you summed up my feelings. After talking to this reporter for many hours, I felt sucker-punched. The only answer is going local...to doctors, to MS communities, to press, to our own neighborhoods. It's looking more and more like grass roots efforts are the only thing working. thanks, everyone-
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Joan,

Do you think going to the local MS Walk and hopefully speaking to the local press there would be worthwhile? I am the only one within several states to have the procedure done. I have never done any thing like this. should I contact television or newspaper?

Cat

_________________
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.

the WSJ is a business publication ....not a medical publication , such as the NEJM . Do not fret about the article nor it's author.

I am extremely satisfied that CCSVI and its lead investigators have gotten some serious ink ....and now many more people are aware of CCSVI. And perhaps the right people are now following this with keen interest.

As I have said before .....when the money people start showing interest ..you know you are on to something .

And the WSJ is the first step in that direction. Stay tuned.




Mr. Success

Another CCSVI story in the Ottawa Citizen

It's very positive.

http://www.ottawacitizen.com/opinion/tr ... story.html

Hi,
I got an invitation in the mail for a local dinner put on my a Pharma for a CRAB. I am going to attend. I am hoping the set up is large round tables so I can at least speak to my small group.
I would like to get the microphone to ask a question as they ususally do, but do not want to appear to hijack it.
I think, if given the change with a microphone, that I will say I am one of the few who have had the opportunity to be have had the procedure done and my results have been miraculous.
Have any other 'Stenters' attended an MS meeting and had the microphone?
I might add I am not shy and my husband is trying very hard to script this so my feelings do not BOIL to the top.
I would appreciate any etiquette tips.
Sincerely, Rose

well, it makes much more sense now why the Stanford neuros were so enraged by Dake's work - he was undermining the big news they had brewing ...



http://pagingdrgupta.blogs.cnn.com/2010 ... -sclerosis



aaaaactually ... *sigh* when is the word going to sink into the world's head that myelin destruction and immune system involvement are late comers to the destruction parade, and that neurons are dying before the lesions even show up?

The Nature Medicine publication that is noted in Burton's 2nd WSJ article published Singh and Zamboni last year.
It appears so, or at least it is a really good link to The Journal of Cerebral Blood Flow and Metabolism.
Go to Search all issues of Nature Medicine, put in CCSVI and that comes up.
How can one read this and NOT understand?
Sincerely, Rose
But maybe I am just the last to read this. Looks like December 2009.

That is so true and may turn out to be one really big contributions CCSVI makes to MS research. If we refocus much of the research $$ toward what is really the cause of the damage and progression, we should make progress alot faster. I have had MS for 35 years and am getting a bit tired of dead ends and lack of progress.

Here's a Globe and Mail article that addresses (rather awkwardly I might say) both the topics of CCSVI and interferon in the same article. http://www.theglobeandmail.com/life/hea ... le1515639/

I hope I'm not getting off topic, but this was interesting because:

1) These two topics don't seem obviously related, yet the same WSJ journalist did an article on each, and G&M combined them into a single article.

2) Globe and Mail hasn't historically been against CCSVI, nor has it been ignorant about the details. In fact it was their positive article in November that introduced me to Zamboni's ideas. In this current article they are both negative and misinformed. Their facts border on...well...on that which is not factual.

3) I don't know what to make of the G&M journalist's quote "Yet, most of the new MS research dollars may already be dedicated to getting to the bottom of Dr. Zamboni’s novel theory"
The fear of funding being "wasted" on CCSVI is an interesting angle to take, and it is one I have only heard once, and by a doc who hangs w/ the Stanford guys.

Interested in thoughts.

p.s.If I should have started a new thread, or edited details, let me know. I'll do it gladly

The Globe and Mail story is the worst hatchet job I've seen. How the writer (copier and paster) could make one story from two completely different ones is beyond me. It's pointless.

I'm a Publisher, and heads would roll if my editors ever put out a story as poorly executed.