NMSS

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

Postby cheerleader » Wed Oct 07, 2009 12:23 pm

Sharon wrote:
I think we should all send it to the NMSS - flood their email box. Any volunteers?

Sharon


:wink: Count me in!

cheer
Last edited by cheerleader on Thu Oct 08, 2009 8:12 pm, edited 1 time in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby radeck » Wed Oct 07, 2009 12:44 pm

You know it's going to be published this month? Or only going to be sent to the referees? If the former, the date should be set. Sorry for taking the thread off topic, but that's an important date for me...
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Postby Ernst » Wed Oct 07, 2009 12:53 pm

Sorry, but once again.. this document would be fantastic in youtube - whole world could see it. (including me :lol: )
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Postby Arcee » Wed Oct 07, 2009 12:56 pm

Radeck, totally get that the date really matters. It is not listed in the current October table of contents. Does anyone know how to confirm?

Joan, congratulations! Sounds fun and rewarding. So glad to hear that they get it. Can't wait to see you and your family talking about this with sound and pictures :D
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby bestadmom » Wed Oct 07, 2009 1:29 pm

I'm in for flooding their boxes. I did it before and will do it again.

Mark, I'm with you 100% on how you dissected their "news" which was opined to death. When CCSVI wipes out MS, there won't be a need for the NMSS. They'll be hanging out with the guy Cheer met in Italy who was hopeful that CCSVI wasn't true so he didn't lose his job.

Michelle
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Postby radeck » Thu Oct 08, 2009 7:47 am

Arcee wrote:Radeck, totally get that the date really matters. It is not listed in the current October table of contents. Does anyone know how to confirm?


So it may be that it only goes to the referee this month. In most fields it can take anywhere from 1-3 months from that point until publication...
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Postby Sneaky » Thu Oct 08, 2009 8:07 am

cheerleader wrote:just did my interview...wow. Very interesting questions and discussion. They get it, in a big way.


Great news! Hopefully no 'creative editting' - this will definitely helps our plight!

Hopefully someone in CA can TIVO it if the piece isn't hosted online.

Mike
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National MS SOCIETYH SITE

Postby Sarahbellum » Thu Oct 08, 2009 7:57 pm

It was me who mentioned it and asked others on this site and other sites to go to the site and give it a try and then email them a request.

The tone of their statement was pretty dismissive but at least it's on the site.
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Postby MrSuccess » Fri Oct 09, 2009 7:53 pm

Hi Sarahbellum - great name BTW -

Sarah , we all are very interested/thrilled with this new Big Idea of Dr. Zamboni's. It looks promising. I am looking forward to seeing more of Dr.Zamboni's published work . It should be out soon.

What HAS been released is very astounding . But there is more ...much more to be presented. Has it not only been 6 months out in the public eye ?

Two MS Societies have given Dr. Zamboni's CCSVI research a look see.
These are the NMSS and the Italian MS society. Both have commented .

A well known MS writer - who's name eludes me at the moment- wrote a very positive narrative on CCSVI , and he HAD NOT heard of it until recently.

It's all new - well sort of :x - .

Read the NMSS article again ....they clearly state their interest in funding new MS research.




Mr. Success [ PM to Mike ....thanks ]
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Postby Sharon » Sat Oct 10, 2009 6:51 am

A well known MS writer - who's name eludes me at the moment- wrote a very positive narrative on CCSVI , and he HAD NOT heard of it until recently.

You are probably talking about Ashton Embry.
Read the NMSS article again ....they clearly state their interest in funding new MS research.

What is not stated is the NMSS is in financial distress - they may have an interest but they have no money.

Sharon
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Postby MrSuccess » Sat Oct 10, 2009 7:07 pm

Hi Sharon , thanks for reminding me of Ashton Emery.

If as you say , the NMSS is in financial distress ...then ALL ,MS research is in big trouble. I hope your information is wrong.

If I may : From the October 6th 2009 posting from the NMSS .....

Research into Blood Flow in the Brain and Venous Insufficiency , or CCSVI, in MS

Q: Will the National MS Society fund research into CCSVI in MS ?

A : The National MS Society welcomes research proposals from any qualified investigators whose research questions are relevant to MS.
All proposals received are thoroughly evaluated for their relevance and excellence by our volunteer scientific peer review panels.

At the present time ,we have not been approached for funding any projects related to CCSVI. If we receive a proposal related to CCSVI that is found to be outstanding and relevant to MS , we would likely commit to fund such a study.

Does that sound dismissive ? 8O




Mr. Success


sorry cheer ....I had to do it ! :twisted:
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Postby Sharon » Sun Oct 11, 2009 6:05 am

MrSuccess -
You wrote
At the present time ,we have not been approached for funding any projects related to CCSVI. If we receive a proposal related to CCSVI that is found to be outstanding and relevant to MS , we would likely commit to fund such a study.

Does that sound dismissive ?


No, it does not sound dismissive -

I said
What is not stated is the NMSS is in financial distress - they may have an interest but they have no money.


I do not doubt the NMSS wants to fund new MS research - they have in the past, they are currently, and they will do so in the future. My understanding is that at this point in time, due to the economy, the NMSS like other organizations, is not as financially strong as it used to be.
Plain and simple. ------

Sharon
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