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Old 02-13-2016, 03:21 PM
Suebee Suebee is offline
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Location: Houston, TX
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Default Senate bill 849 moving fwd on MS head count

Hi, I just stumbled across Trevis Gleason's post on Everyday.com that senate bill 849, which would create a process to collect data for MS (and other neurological diseases) via the CDC, in a similar way that infectious diseases are reported, is moving forward. It's intent is to increase understanding of demographics and identify hot spots and other things, such as the impact of healthcare practices.
Wow, at first blush I think this is a great idea. I was also surprised to learn we really don't have an accurate picture of how many people have MS. It seems This legislation would help researchers to start unraveling some mysteries about MS. a big brother potential seems outweighed by the potential benefits. But I have pause before I throw myself wholeheartedly behind this bill. I haven't heard anything else about it in the news. Since I find you all the most informed bright group (who also happen to have a dog in this fight ), I thought I would see what your opinions are on this. Do you think this good for us?

Link to senate bill 849 https://www.congress.gov/bill/114th-...enate-bill/849

Link to everyday.com post http://www.everydayhealth.com/column...ans-living-ms/
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Old 02-15-2016, 06:39 AM
Apollo Apollo is offline
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Join Date: Nov 2014
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Hi Sue,

Thank you for mentioning this legislation!

I think it is an important bill that will prove beneficial to pwMS. For various reasons Americans have historical been almost hyper-freaked about data collection... big brother is feared, for sure.

60 minutes did a segment which demonstrated the data search engines collect and sell. It absolutely drawfs anything Snowden revealed many, many, many times over.

People who became so agitated at his expose apparently have no clue that they are tracked and sold to multiple companies in their every internet use.

IMO, collecting data to advance the study of MS is fine. It has proven valuable in countries like Sweden. Recall the national data Sweden reviewed on 728 people who smoked and 332 of those continued smoking after diagnosis. Those who continued reached SPMS 8 years sooner than those who quit. I have a young niece with MS who quit:

http://multiplesclerosisnewstoday.co...ple-sclerosis/

Obviously, valuable information can be mined from large databases. But only if we are not too freaked out by privacy concerns especially when privacy is more fantasy than reality for most people using the internet... according to 60 minutes, anyway.

I realize people have strong feelings in this matter; some of my friends certainly do so I assume others do also. And I don't want to be offensive or hardheaded.

I lament the fact that the US is so backward compared to a country like Sweden in establishing large databases which can be mined to study diseases that could assist finding a cause, cure, or effective treatment for MS. JMHO.

Thank you, Sue
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Old 02-15-2016, 03:30 PM
AMFADVENTURES AMFADVENTURES is offline
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Join Date: Sep 2009
Location: Colorado
Posts: 880
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Thanks for pointing that out Suebee. It's about time the government took an interest in the prevalence of MS in the country. Hopefully the results will prioritize research on neurological disease.

While I share your's and Apollo's concerns about the safety of such information, a sad reflection of the times we live in, I think we will just have to tackle abuses if and when they occur. The bigger problem might turn out to be forcing the scientific community to to invest resources in finding the causes and the cures.
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