-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
The exerps made me want to call them a--holes but I sense they are just young students doing this for a grade
The conclusions show they are doing what is expected
They can't see truth....are not critical thinkers
I believ idsa is taking over higher ed...brain washing...preventing truth
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Tick-borne disease (TBD) is highly complex. I don't think the study was to look at that yet, by looking at "on-line behavior" of those with lyme, side-stepping the understanding of TBD can affect the study's outcome.
I'm not looking to call them names, just highly concerned that - once again - the halls of higher education are adding to the misconceptions about lyme and the road upon which patients find themselves.
Also of concern is that the study seems to miss that through discussion boards are links to excellent work by the real researchers in tick-borne diesase. It's not that anyone stops here, although the social connection (people helping people is vital), this is also a gateway to truth - a chance to saves lives quite literally.
Had they been able to see all the real researchers' works to better understand the role such discussion sites serve, well, that's the kind of "searching behavior" that would be of note - how so many ill with TBD must study a lot because it's up to them to ferret out the true researchers in this field.
The necessity to study much to find help is especially hard for many with lyme due to the illness itself - and many have vision issues that just make it all that much harder.
I know I'd rather have a doctor who was up to speed and able to treat me rather than having to figure out so much for myself, through my "on line behavior" of learning and for many to find the doctors who do have the necessary knowledge and skill.
(Not sure which of the two studies) The authors spent a lot of time in one segment criticizing those asking others not to type in all CAPS or in solid text, in general asking those posters to have shorter paragraphs -
- but never brought it back to the fact that many here can't read more than about 3-4 lines with no break - or that when more can read the post, more will be able to help with a reply.
Had the authors known more about what lyme can do to vision, the notes they saw from time to time requesting more readable posts would have made sense rather than bring about critcism of "control" issues when it's about being able to read the posts. Just that.
So how will readers who don't know this then interpret the paper that offers these kinds of criticisms without necessary background? It's unlikely they will understand the context because it's been omitted. There are other similar examples of this, too. -
[ 08-04-2013, 10:42 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
Personally, I'd rather see them study the disease entities since that's what we're dealing with. I don't like to see us blamed or labeled for something not of our making or choosing.
It's akin to saying let's see how caged people or animals act, instead of studying why the cages are there in the first place!
Jen, I am po'ed that I had to spend 25 years learning how to cope with a undiagnosed condition, Lyme disease. I'd much rather see the emphasis on educating us all about what's going on.
I'd like to challenge your group of researchers to start dealing with the situation instead of the victims - to research what we're going to do about it as a global eradication effort.
Posts: 13171 | From San Francisco | Registered: May 2006
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i cant think as much as you keeb but after seeing my very independent thinker kids go to college and turn into puppets re certain stuff...im kinda negative about this now
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
robin-im guessing they are computer science students
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
posted
That may be, Ipkayak, but this situation is much too serious to be playing around - they too need to be involved in educating the heck out this society so more don't have to fall into having to cope with this unbelievable situation.
Posts: 13171 | From San Francisco | Registered: May 2006
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Katie posted on 05 June, 2009:
The Human-Computer Interaction Institute at Carnegie Mellon University
"this study is about recognizing that there's a lot of contradictory and uncertain information about Lyme disease, and finding out how we can help people navigate it. . . ."
". . . I would like to write once again that this research isn't about what is right or wrong medically, but about people that are trying to find information about a very disputed illness. . . ."
PURPOSE: The purpose is to
(1) find out how people, as a community, find resources online, and why they do or do not act on the information they find in making decisions about diagnosis or treatment, and
(2) build a tool, driven by that study, that would help people share online content.
The idea is that there's a great amount of information online, and some of it is incomplete, some of it contradicts other information, and some still is inaccurate.
This study is not about making judgments about what should or should not be trusted.
It is about finding out how people decide how trustworthy a resource is, and how we can help communities of people share that information more effectively. . . ."
(end of Katie's excerpts) -
[ 08-06-2013, 07:19 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
- by Katie Kuksenok, Michael Brooks, Jennifer Mankoff
End-user generated content is common, yet often not accessibility. Our case studies of online communities that create accessible content, shows the importance of negotiated and community-defined notions of accessibility.
-----------
No dates listed on either title page, although from Spring 2013.
Both submitted to:
CHI 2013: Changing Perspectives, Paris, France
---------- So, great, now even people in France will be thinking it's okay to call everyone with lyme a "Lymie" or ANY nickname - that's not going to help with understanding at all. Not a way to avoid judgements about those with lyme with many of the "observations" included as so many are out of context.
As this is from The Human-Computer Interaction Institute at Carnegie Mellon University, I have to wonder if some sort of application will be developed for searching and if that will allow anyone searching to easily find the truth about lyme - or not? -
[ 08-06-2013, 07:22 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic