[Bearygood]

We often talk aobut MS in the media and that inaccurate portrayals aside, raising awareness is a positive and necessary thing. However, one of my biggest beefs in regard to raising awareness are the "approximately 400,000 people in the US" and "2.5 million people worldwide" have MS quotes. We see these numbers in every article, obviously culled from their appearance on the NMSS website. Without being statisticians, everyone here knows there's a whole lot more people who have MS.

Today in the mail I got an invitation to an MS fundraising dinner in CA. The cover letter cited the 2.5 million people worldwide statistic and on an accompanying letter (on the local society's letterhead), it said the goal of the fundraiser was to raise money for the "101,500 touched by MS in the Southern California chapter area".

So, I got bummed out about this issue all over again today. Obviously, 25% of the entire U.S. MS population doesn't live in the LA area and it just reminded me once more about the flawed statistics.

Someone correct me if I'm wrong, but I believe the last time some sort of census was taken was 1979. I've read that a new census is in the works although I don't know when it's expected to appear. But in the meantime how hard would it be to collect data from the local chapters? Obviously, by virtue of the letter I got, it doesn't look like it would be that hard to get at least a BETTER number in the interim.

It just makes me feel like by these numbers remaining static, it somewhat inherently contradicts efforts to raise awareness. As the number increases for ANY disease, so will the attention.
Okay, getting off now.

I really got bummed out by this and was just wondering if anyone else is as bothered as I am.

[wkikta]

'Touched by MS' does not mean 'have MS'. It means those with MS and their immediate families. Yes, statistics are very confusing. You can make them say anything you want.

[Bearygood]

Good point, Bill. I tend to believe that it was a flowery way of saying they have MS but I could be wrong.

Even still, I would think that if the local chapters really have a database citing those "touched" by MS, they would know how many have MS. But, I guess it is also possible that it's a statistical allocation of the 400,000 number and how many people in an "average" family.

Nevertheless, the primary issue still remains for me. The numbers are way off.

[Gazelle]

Stats aren't fun. I have to work with them a lot. And they can say whatever you want them to.



This doesn't cite where the statistic came from or when it was compiled:

MS is the most common neurological disorder of young adults; there are approximately 350,000 people with MS in the United States and an estimated 2 million patients worldwide.
Multiple Sclerosis: Current status and strategies for the future (2001)
Janet E. Joy and Richard B. Johnston, Jr., Editors Committee on Multiple Sclerosis: Current Status and Strategies for the Future
Board on Neuroscience and Behavioral Health
INSTITUTE OF MEDICINE
NATIONAL ACADEMY PRESS
Washington, D.C.


http://books.nap.edu/openbook.php?is...072859&page=R7

[Bearygood]

Well, now I am on a mission to find out what the number represents. Everyone's gone for the day but I'm going to call tomorrow. If only out of curiousity, I'd like to hear what they say.

[Gazelle]

I'd be interested to know too. I looked on the NIH and that's the book that I ended up being pointed to from the NIH site. Mind you, I didn't look too hard but it supports your statistics.


Keep us posted on what you find out.

[lady_express_44]

I remember in the early 2000's, Montel Williams talked about a gallop poll that he had organized, and it was their estimate that there was over 1 million (maybe closer to 1.5M) in the US that have MS. That was back in the days where the NMSS was still saying 250,000, and had been saying that for around 20 - 25 yrs.

If I remember correctly . . . he thought it had something to do with "them" wanting to keep the numbers down so that it would still be a "orphan disease" for the purposes of drug R&D research grants (or something to that effect).

I too think many more people have it then is admitted to.

I also suspect that "they" have a better idea of what is causing it, but until they can figure out how to stop/cure it, they aren't going to let the cat out of the bag.

Just my conspiracy theory for the decade.

Cherie

[dmplaura]

It's probably old news, but I just finished reading Montel William's book "Climbing Higher" tonight.

The first printing of the book was in 2004. He had 2 polls done, one was Gallop, can't recall the name of the other offhand, however the Gallop poll result was just under 1 million in the USA with MS alone. Now, of course that's old data, and we're not 100% sure how 'accurate' the findings are etc (I haven't read the Appendix yet, maybe the Gallop results are explained there in more detail), however 1 million + is sounding like a much more accurate number for those with MS than 400,000. That much is for certain.

I'm with Bearygood and how current figures are needed at this time, specifically the point regarding statistics and how much 'attention' is placed on the disease (ie: a number double the old figure is certainly something to raise eyebrows about I'd say!).

It feels like MS is almost as 'common' and 'known' (at least the name and a partial degree of understanding) by the public in my neck of the woods. I'd gander as common here as diabetes (maybe not, but it certainly feels like it sometimes!).

[weegot5kiz]

stats can say anything and i always warn my kids of this,

i too agree there are more MSers then known cases, look at how many of us suffered for years without a lable as to what was wrong with us, how many of those out there have not been able to put a name to what troubles them?????

[Bearygood]

Originally Posted by lady_express_44

If I remember correctly . . . he thought it had something to do with "them" wanting to keep the numbers down so that it would still be a "orphan disease" for the purposes of drug R&D research grants (or something to that effect).

Well, that just seems all backwards, now doesn't it. I understand the reason for this line of thinking but in the broader scheme of things, it doesn't make much sense to me. When I was first dxed I was told that MS has 2 things going against it in terms of funding. First, that it's a chronic disease rather than a fatal one and secondly, the relatively small population.

Originally Posted by lady_express_44

I also suspect that "they" have a better idea of what is causing it, but until they can figure out how to stop/cure it, they aren't going to let the cat out of the bag.

Well, I'd love to hear you elaborate on this one if you're willing!