This Is MS Multiple Sclerosis Community: Knowledge & Support

Welcome to the world's leading forum on Multiple Sclerosis research, support, and knowledge. For over 10 years, This is MS has provided an unbiased community dedicated to Multiple Sclerosis patients, caregivers, and affected loved ones.
It is currently Sat May 25, 2013 5:18 am


All times are UTC - 8 hours [ DST ]




Post new topic Reply to topic  [ 25 posts ]  Go to page Previous  1, 2
Author Message
 Post subject:
PostPosted: Tue Jun 29, 2010 10:19 am 
Offline
Family Elder
User avatar

Joined: Thu Jul 09, 2009 3:00 pm
Posts: 1274
CharW,

Thanks for the link! Smart and observant of you to catch the change they made in the title of the article.

There are almost 80 comments, and one of them is from cheerleader (signed as Joan Beal), but for some reason, she didn't mention CCSVI Alliance (?).

My comment is awaiting moderation -- I hope they don't mind that I promoted TIMS. :)


Last edited by HappyPoet on Tue Jun 29, 2010 10:30 am, edited 1 time in total.

Top
 Profile  
 
 Post subject:
PostPosted: Tue Jun 29, 2010 10:26 am 
Offline
Family Elder
User avatar

Joined: Mon Sep 10, 2007 3:00 pm
Posts: 4682
Location: southern California
HappyPoet wrote:
CharW,

Thanks for the link! Smart and observant of you to catch the change they made in the title of the article.

There are almost 80 comments, and one of them is from cheerleader (signed as Joan Beal), but for some reason, she didn't mention CCSVI Alliance (?).


Yes! Glad the word surgery was corrected. The president of the CCSVI Alliance has made contact with the reporter, HP. I chose to comment as a wife and caretake, and someone who has read the research-rather than an official board member. There will be more to come.
cheer

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


Top
 Profile  
 
 Post subject:
PostPosted: Tue Jun 29, 2010 10:51 am 
Offline
Family Elder
User avatar

Joined: Thu Jul 09, 2009 3:00 pm
Posts: 1274
Cheer,

Thanks for filling me in. I loved reading your post.

I wonder if we have Sharon to thank for the change in the title. I'm looking forward to the official unveiling of the CCSVI Alliance website. The more sites that intelligently promote CCSVI, the better off we'll all be.

:)


Top
 Profile  
 
 Post subject:
PostPosted: Tue Jun 29, 2010 2:51 pm 
Offline
Family Elder
User avatar

Joined: Thu Jan 17, 2008 4:00 pm
Posts: 367
Great article. I am not a "true believer" but I looooooove reading about the pressure being put on the medical community to consider other approaches to the disease.


Top
 Profile  
 
 Post subject:
PostPosted: Tue Jun 29, 2010 3:59 pm 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8511
rainer wrote:
Great article. I am not a "true believer" but I looooooove reading about the pressure being put on the medical community to consider other approaches to the disease.

yup, I wonder what other illnesses are out there that just need someone to take a step back and look at it differently. The new imaging technologies of the 90s played right into the discovery of CCSVI.

_________________
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition


Top
 Profile  
 
PostPosted: Tue Jun 29, 2010 4:23 pm 
Offline
Family Member

Joined: Tue Apr 06, 2010 3:00 pm
Posts: 42
Location: Near Pittsburgh,PA
Thank you NYTimes, et. al.

Unproven treatment? if the veins are blocked...OPEN THEM,
despite MS diagnoses...and THEN keep researching...


It's like Cataract removal...people were 'blind' until it was 'discovered'
the lens could be surgically excised and replaced!
Technology caught up...as did IR techniques...for Ccsvi...

Again, regardless of MS, if the veins are compromised fix them!!!


Top
 Profile  
 
 Post subject:
PostPosted: Tue Jun 29, 2010 4:54 pm 
Offline
Family Elder
User avatar

Joined: Thu Oct 15, 2009 3:00 pm
Posts: 1273
Location: St. Louis, Missouri
There was one quote in the NYT CCSVI article that struck me particularly :

"Joyce Nelson, the president of the Multiple Sclerosis Society in the United States, said 'I wasn't aware of how thin the veneer was and how close to the surface the frustration was'"

So this person who is paid over $400,000 a year to head up the NMSS is so out of touch with people with MS that she wasn't aware of "how close to the surface the frustration was" ? Talk about an ivory tower ! We are given this diagnosis, and we are given very little explanation of what it is or why we have it except that it is autoimmune and our brains are being damaged. And we aren't frustrated !! We are frustrated because our symptoms are not manageable ! Ms Nelson should do as Dr Sclafani has done and get on this message board and do a little reading.

ozarkcanoer


Top
 Profile  
 
 Post subject:
PostPosted: Tue Jun 29, 2010 5:03 pm 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8511
I saw Ms. Nelson's quote as It's not us, it's them! finger-pointing. If she admitted that they were slow to the table in CCSVI, if she admitted that the diagnostic studies that were funded are woefully inadequate, if she apologized for a past mistake in not putting some of their extensive funding toward LDN research (which now has an explanation for why LDN worked, because of its angiogenesis effect, aka collateral vein building), if she took a lead in exploring CCSVI research rather than a lead in blocking it, then I would consider listening. But this! "Look at them, look at them, they're so angry," finger-pointing. No responsibility for the MSS's role in the rejection they are now getting from us, the former sheep.

_________________
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition


Top
 Profile  
 
 Post subject:
PostPosted: Tue Jun 29, 2010 5:17 pm 
Offline
Newbie
User avatar

Joined: Tue Apr 06, 2010 3:00 pm
Posts: 7
Location: Antigua, WI
Good comment on the NY Times blog:

As a retired physician I am all for patient advocacy.

My wife cured/controlled her longstanding universal ulcerative colitis (for the last ten years) with the SCD diet that she found online. –To the amazement of her gastoenterologist and myself.

Physicians have to run a mill today to cover expenses, and have very little individual time to offer. It helps if the patient is knowledgible and succinct.

Regarding research — drug industry research is based on incomes – not outcomes.

The Australian pathologist who found the little germ causing ulcers was derided for years–before he won the major health awards, and his findings toppled an entire medical industry of gastrectomies and ulcer remedies.

This venous stenosis may not be the answer for MS, but it certainly is worth investigation at the fastest pace.

Reading these replies should be required nightly reading for neurologists. Believe me patients speak “softer” in the medical office.

Good luck to all of us. Roger
— Roger


Top
 Profile  
 
 Post subject:
PostPosted: Tue Jun 29, 2010 6:49 pm 
Offline
Family Elder
User avatar

Joined: Sun Mar 28, 2010 3:00 pm
Posts: 237
Thank you for you input CharW and welcome.

Ozarkcanoer and Cece,
Here here

Drury


Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  [ 25 posts ]  Go to page Previous  1, 2

All times are UTC - 8 hours [ DST ]


Related topics
 Topics   Author   Replies   Views   Last post 
There are no new unread posts for this topic. M.S. patients hope to legalize controversial surgery in U.S.

erinc14

1

857

Sun Jul 04, 2010 8:56 am

Ruthless67 View the latest post

There are no new unread posts for this topic. NYTimes Article: Mice Fall Short as Test Subjects...

ThisIsMA

1

397

Tue Feb 12, 2013 12:15 pm

Cece View the latest post

There are no new unread posts for this topic. New Surgery for Chiari...New Surgery for MS - Links?

Hope66

2

1414

Tue Jun 22, 2010 7:34 pm

Hope66 View the latest post

There are no new unread posts for this topic. Surgery?

jay123

4

966

Tue Sep 22, 2009 10:44 pm

Jamie View the latest post

There are no new unread posts for this topic. Questions for those who have the surgery

guitarguy

14

1884

Fri Jul 10, 2009 9:34 pm

Daisyduck View the latest post

 


Who is online

Users browsing this forum: Rosegirl


You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum

Search for:
Jump to: