I absolutely will!

I'm thinking they can't officially count those who are not officially diagnosed. Even up here in the boonies, I know a few people who are "tentatively" diagnosed, or diagnosed with "possible" or "probable" MS. Their doctors virtually say they know these people have it, but they can't diagnose. Where do they fit in the statistics?

As Mark Twain said, "There are three kinds of lies: Lies, Dam* Lies, and Statistics."

Statistics is alot like a string bikini on s supermodel. What they reveal is interesting, but what is covered up by them is often far more fascinating...

What my stats instructor used to say is "on average every man woman and child has one bossom and one testicle". I've been lucky enough to not run into that "average" person yet.

I guess it depends on where they want the money spent, which seems to be in supporting the goal to slow/stop progression of the disease once we have it (not identifying the cause). There are a LOT of entities making a TON of money off this disease.

I suspect our governments know far more then we give them credit for.

Cherie

A little OT, but in reference to the above comment I made earlier, I just ran across this a few mins ago:

http://cosmos.bcst.yahoo.com/up/play...nce&ch=4535474

Cherie

I'm with all of you on this one. For years it has been published that 400,000 people in the US has MS. For everyone that has been diagnosed since this statistic was published, that many people have dropped off this number for what ever reason. It is impossible for that number to remain the same over the years. It would have to go up or down, but not remain the same.

However, when they say 400,000 do they mean 400,000 RRMS? Who knows.

Additionally, I don't believe in the worldwide stats either. It is hard for me to believe that this disease does not affect those in the 3rd/4th world countries. The difference is technology and medical care available in the different countries. IMHO.

Good link/perspective about $$ to be made on orphan diseases. I understand the financial aspect as it pertains to pharmaceutical companies and government agencies like the FDA, etc. It's when it comes to the NMSS that I just don't get it.

I did call the So Cal chapter this morning and Bill was right. The "101,500 affected" represents people with MS and their "friends and families". As I said before, I'd guess that deriving that statistic is probably some allocation of the national number and the number of people in an "average" family. (I couldn't even begin to guess how they'd figure what the national average is for the amount of friends a person has.) The woman in charge of marketing who they said would know about statistics wasn't in so I decided to call national headquarters.

I got a very nice woman who told me that the 400,000/2.5 million dxed statistic was based on the last census done in 1975. She agreed with every reason I gave her for my frustration and told me that new legislation to create an updated database was introduced in 2006. I'm expecting some info. via email but in the meantime, I found the following -- at least from this it looks like the bill was actually introduced this year. I'm not done with this yet but in the meantime, here's some info.:

H.R. 5874: National MS Disease Registry Act
Introduced: 4/22/2008
Committees: House Energy and Commerce

Here is the NMSS' position paper:

http://www.nationalmssociety.org/gov...d.aspx?id=1031

No more tangible information right now but like I said, I'm not done with this yet. If anyone wants to jump on the advocacy bandwagon for this one and do some more research, I'd welcome it and I'll keep you posted on my end.

On a related note, in my travels I came across one Oregon doctor's efforts to try to collect more accurate data.
http://www.oregonlive.com/health/ore...450.xml&coll=7

P.S. I LOVE Mark Twain!!!

The doctor that is spearheading this effort in Oregon is the doc that is running the clinical trial that I am currently enrolled.

It's one of many efforts across the country that the NMSS is trying to get going in lieu of the National Registry Database funding that is not forthcoming.

There are several issues with the National Registry Database:

1) privacy/HIPPA is in the way. The National Registry is trying to get around the HIPPA issues with what to do with and how to protect the information gathered for the National Registry.

2) How to efficiently collect the data and not duplicate information.

3) How to categorize the information

4) Where to store the information

The NMSS is working with a couple of other disease database organizations to develop a similar software program for MS Registry.

5) Convincing Congress that this database is essential for funding when they don't see MS as a threat to society has been a huge stumbling block. That's why our presence on Capitol Hill during these Public Policy Conferences is essential.

Our efforts to break out MS from the NIH/DoD budget into a separate line item for research funding is essential. Keep writing to your senators and congressmen. Go to the NMSS Gov't Affairs Website and send out letters. It's important.

In my neck of the boonies, I know 2 people who are officially diagnosed. Including myself, I know at least 8 with possible/probable ms dx.

Perhaps doctors are withholding dxs to keep the count low.