NARCOMS???

cathyb · Post by **cathyb** » Sat Feb 13, 2010 1:25 pm

OK, someone in my MS support group sent me a link to the NARCOMS newsletter. Here is their URL: http://narcoms.org

Perhaps someone that knows more than me can tell me WHY:

1. This is on page 1:
OUR GOALS:
Develop new collaborations between researchers, patients, and healthcare providers to:

* Increase knowledge of effective treatment
* Increase high quality healthcare services
* Raise awareness of MS
* Promote greater understanding about MS
* Increase peer reviewed publications

YET... no mention of Boston findings for CCSVI.

2. This is on their "About MS" page:

What is Multiple Sclerosis? Multiple sclerosis (MS) is a chronic, unpredictable disease of the central nervous system (the brain, optic nerves, and spinal cord). It is an autoimmune disorder. This means the immune system incorrectly attacks the person’s healthy tissue

I thought the autoimmune disorder theory isn't proven? They certainly are publishing this like it's 100% positive!

I realize I might be MS brain addled, made worse by just shoveling snow for 2 hours, so please can someone just set me straight here?

msgigiski · Post by **msgigiski** » Sat Feb 13, 2010 1:39 pm

The auto immune resonse has been the only reasonable explanation for the responses in MS patients. The MRIs highlight a connection, but it is not neccessarily a solid connection.

For now, MS is most easily explained as an autoimmune disease.

The other choice is MS causes something to happens in your body causing your nerves to not work properly.

Perhaps you could suggest that they add a disclaimer saying that "the current theory is that MS is an autoimmune disease".

However most people do not like theories, they want clear consise statements.

cathyb · Post by **cathyb** » Sat Feb 13, 2010 1:43 pm

Agreed, I was about to pound them with complaints-a-plenty, but wanted to get some feedback so I don't look like a complete idiot. Then again, I do look pretty funny anyway, so who really cares, right??? ;)

msgigiski · Post by **msgigiski** » Sat Feb 13, 2010 1:48 pm

I find it is better to agree at first then try and get others to change things the way you want.

I am lousy at that technique, but I have heard that it works for others.

Vonna · Post by **Vonna** » Sat Feb 13, 2010 2:42 pm

Hi Cathy,

I have checked into the NARCOMS extensively please go to this link. Watch the video all about NARCOMS and CMSC, the founders of NARCOMS. I couldn't believe what I was studying! Part 2 is not on video yet, but even more interesting. You can download the .pdf at the same web page. It will take some time to read, but I believe it is very imperative that people know this information!!! It is based on fact, not opinion.

This is the real link, for those who tried the other one, please try again!

http://ccsvivictory.club.officelive.com ... erest.aspx

Vonna