The AP article!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby Sharon » Tue Mar 23, 2010 8:38 pm

Might I suggest that each TIMS member look at their local newspaper website -- if they picked up the AP story --then send a return email or post something in the comment section on the local website. Give them feedback --- thank them for running the story ---
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Postby Ruthless67 » Tue Mar 23, 2010 9:23 pm

My son-in-law just told me he read the article in the Napa Valley Register; so that's Napa, Calif., USA.
He was excited to see it in print too. I've been telling them about it since Nov. 2009 and they had yet to hear of it anywhere else but from me. He lost his mother 18 years ago from side effects of her MS drug, Imuran, used to suppress white blood cells. So he's happy that I and others have an option other than drug therapy.

I liked the article very much as it didn't seem to be overly slanted either way. But, it fell apart and twisted around in the following text.

“he discovered that veins carrying oxygen-depleted blood down the neck or spinal cord were narrowed, blocked or twisted in a group of patients.
Zamboni reported that made blood back up in a way that might be linked to MS damage, by causing tiny leaks of immune cells into the brain that start a cascade of inflammatory problems.”


That’s the first time I’ve heard it was “tiny leaks of immune cells into the brain that start a cascade of inflammatory problems” and not the build up of iron deposited in the brain from the oxygen-depleted blood NOT draining out properly and sometimes even refluxing, because of narrowed, blocked, missing or twisted veins .

I don’t know if I should write the editor for a correction in tomorrows paper or not, anyone care to weigh in and give me their opinion?

Sharon, I definately think it is a great idea to write our local editors and thank them for running the story. We could even offer them any of the many reports and videos we have access to here on Tims if they’d like to run anymore articles.
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Postby CureIous » Tue Mar 23, 2010 9:30 pm

Sharon wrote:Might I suggest that each TIMS member look at their local newspaper website -- if they picked up the AP story --then send a return email or post something in the comment section on the local website. Give them feedback --- thank them for running the story ---


Had a letter to the editor out before the ink was dry on my morning paper today. Ours got top billing, front page of the 2nd section. No, that wasn't an earthquake, it was my jaw hitting the floor lol. So glad they invited themselves to the party. They usually post up my letters so hopefully this time too, put as many plugs as could fit in but they usually edit my stuff way down, imagine that! lol.

Btw I did read your post on my thread Sharon, thanks! Not sure if Don is going this time but one things for sure, going to be a whole lot funner than last time, if that's possible!

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby CureIous » Tue Mar 23, 2010 9:37 pm

Ruthless67 wrote:My son-in-law just told me he read the article in the


Sharon, I definately think it is a great idea to write our local editors and thank them for running the story. We could even offer them any of the many reports and videos we have access to here on Tims if they’d like to run anymore articles.


The version in our paper was way shorter than the online version, heck they barely mention Stanford at the end, then forgot to put "stents" in there, so the lone reference was thus: "A Stanford University surgeon tried implanting scaffolding-like into some MS patients' narrowed veins".

Scaffolding like what? lol. Once I read the online version, then it made sense how they cut everything down, but there was plenty of room to add STENTS in there hahaha.

I figured if it was AP in our National section it was all over, which only means a matter of time until the bubble headed broadcasters finally get a clue, once it's AP they can just say, "AP is reporting" that way there's little work involved and no liability... Good to see you...

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby whyRwehere » Sat Mar 27, 2010 6:11 am

Looks like the whole thing got into the CAPE COD Times HERE
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