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 Fri May 24, 2013 12:37 pm


All times are UTC - 8 hours [ DST ]




Post new topic Reply to topic  [ 5 posts ] 
Author Message
 Post subject: Hubbard newsletter
PostPosted: Thu Jan 31, 2013 9:56 am 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8511
Quote:
Because neither MRV nor ultrasound has adequate sensitivity and specificity to be diagnostic, for our Registry FDA application, we are not requiring either of those tests. We are encouraging IVUS(intravenous ultrasound) which can be done at the same time as catheter venography which remains the gold standard. We hope to hear from the FDA within the month about restarting testing and treatment.

We've been encouraging IVUS here at TiMS for quite some time! I think IVUS is getting more mainstream than what it was. Great news.
Quote:
We expect a response from the FDA regarding the Hubbard Foundation's request for an IDE for our Multi-Center Registry in early February 2013. The FDA had acknowledged our complete submission on January 6,2013 and has 30 days to respond. Based on their initial response in September 2012 we are cautiously optimistic.

Should know soon if their registry will be FDA approved and back in business.
Quote:
C-Reactive Protein (CRP) and MS. Here's an abstract from a 2005 paper. http://www.ncbi.nlm.nih.gov/pubmed/16009907 We have become interested in the measure of serum high sensitivity C-reactive protein (HS-CRP) as the best measure available for monitoring low grade inflammation in the blood stream. We think one of the common denominators between CCSVI and MS is inflammation at the blood brain barrier (BBB). We believe that one can significantly decrease inflammation with diet. For instance, Arlene had a CRP of 9 and reduced it to .1 after being on a gluten free, modified Paleo diet. ( normal is considered 1-3 mg/L). This 2005 paper published in Neurology is one of the few papers linking CRP to MS. It showed that CRP was higher during relapses and was reduced by interferon treatment;everyone should have their CRP tested routinely and should consider dietary methods to reduce inflammation.


I posted more from the newsletter than I normally would but there was a lot of good information in there.
Here's the link to where you can sign up for the newsletter if interested: http://www.hubbardfoundation.org/ccsvi-education


Top
 Profile  
 
 Post subject: Re: Hubbard newsletter
PostPosted: Thu Jan 31, 2013 10:27 am 
Offline
Family Elder
User avatar

Joined: Mon Sep 10, 2007 3:00 pm
Posts: 4682
Location: southern California
Great news! Thanks for this, Cece.
Glad they're talking about Crp and our ability to reduce this with diet/lifestyle. That's what got Jeff's inflammation numbers down initially. His were sky high at diagnosis.
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: Re: Hubbard newsletter
PostPosted: Wed Feb 06, 2013 3:05 am 
Offline
Family Elder
User avatar

Joined: Thu Oct 19, 2006 3:00 pm
Posts: 1054
Location: Oxfordshire, England
Cece wrote:
Quote:
Hubbard Newsletter:
Because neither MRV nor ultrasound has adequate sensitivity and specificity to be diagnostic, for our Registry FDA application, we are not requiring either of those tests. We are encouraging IVUS(intravenous ultrasound) which can be done at the same time as catheter venography which remains the gold standard. We hope to hear from the FDA within the month about restarting testing and treatment.

I wish that the Hubbard Registry would state that Catheter Venography and IntraVenous UltraSound must be used in combination to detect all instances of stenoses. There is published evidence to say this and it would help pwMS when choosing which clinic to use.
Do the Hubbards read TiMS?
MarkW

_________________
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html


Top
 Profile  
 
 Post subject: Re: Hubbard newsletter
PostPosted: Wed Feb 06, 2013 8:06 am 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8511
Remember the Hubbards approved DIR, whose area of expertise was cementing spines. I am very glad that the Hubbards are encouraging IVUS. But I think they are taking all comers. Apologies to DIR, this is a bit harsh, and I have no idea how much experience DIR has gained since last year.


Top
 Profile  
 
PostPosted: Wed May 01, 2013 2:52 am 
Offline
Family Elder
User avatar

Joined: Thu Oct 19, 2006 3:00 pm
Posts: 1054
Location: Oxfordshire, England
What's News
•David met with the FDA in Silver Spring Maryland at 10 AM Fri April 26th accomanied by the research coordinator, Heidi Sauder PhD. The meeting lasted exactly an hour and was attended by 5 PhD's and MD's plus one on a video link. Overall, they were friendly and supportive. They explained that the reason they requested a "significant risk" investigational device exemption (IDE) was because balloons and stents are,themselves, are significant risk devices and not because of anything to do with CCSVI or MS. Based on the discussion David is submitting an amendment to his proposal and remains optimistic we will get the approval.

Not seen this posted before.
MarkW

_________________
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html


Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  [ 5 posts ] 

All times are UTC - 8 hours [ DST ]


Related topics
 Topics   Author   Replies   Views   Last post 
There are no new unread posts for this topic. Buffalo Newsletter

[ Go to pageGo to page: 1 ... 6, 7, 8 ]

MS_Jess

107

13433

Tue Feb 09, 2010 6:21 pm

annad View the latest post

There are no new unread posts for this topic. EHC UK Newsletter (Price Increase)

[ Go to pageGo to page: 1, 2 ]

danw

28

3868

Thu Feb 10, 2011 4:40 pm

Trent View the latest post

There are no new unread posts for this topic. MS Winter 2009 Ontarion newsletter In MY Mailbox Today

bohemianbill

3

1493

Mon Dec 07, 2009 12:26 pm

bohemianbill View the latest post

There are no new unread posts for this topic. Dr Hubbard

costumenastional

4

1493

Sun Jun 13, 2010 8:59 am

costumenastional View the latest post

There are no new unread posts for this topic. Hubbard

selkie

12

1388

Fri Jul 30, 2010 12:16 pm

gothicrosie View the latest post

 


Who is online

Users browsing this forum: No registered users


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: