posted
The Human-Computer Interaction Institute at Carnegie Mellon University is conducting a study of how individuals with Lyme disease, and people who help them, use online resources to support themselves. Such resources include sites offering medical information as well as research and experience blogs, forums, and so on.
The results of our study will be used to drive the design and development of tools to help individuals with chronic illness and their caregivers find, use, and share online information.
We seek participants to complete the survey (link below), which should take about 30 minutes. We will compensate survey participants $50 through a raffle; the chance of being selected will be no worse than 1 in 100, but depends on how many people respond to the survey.
When you complete the survey, you can also choose to be later contacted about further participation through an interview or a diary study.
In order to participate, you must be (1) Between 18 and 90 years of age, and (2) Either have chronic Lyme disease or provide close support to someone with chronic Lyme disease.
*** INTERVIEW ***
We seek participants for interviews about their experiences as patients or caregivers. All information from the interviews is confidential.
Interviews can be done by phone, IM, or in person, and participants are compensated $10 for each hour they are interviewed.
*** QUESTIONS? ***
For more information, or if you are interested in participating, please contact us about this project at [email protected].
Thank you!
(I edited this post to include both the survey and interview information, and to reflect the discussion below.)
charlie
Frequent Contributor (1K+ posts)
Member # 25
posted
OK fine, but could you at least give us some idea what 'leveraging the social web' means in ordinary English and not academician-speak.
I can assure you you'll get more responses that way.
Charlie
Posts: 2804 | From Texas | Registered: Oct 2000
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Katie,
First, thank you for your interest in our community of patients who have had to become students. First, I have some basic questions.
---
Who is funding this? That is the most important question. What outcomes do they anticipate and why does it matter to them?
---
Who will have this information? Who will decide what to do with it? Who writes the headlines or qualifies the information when the study is complete? Who will have the last word or chance for clarification?
You say this is "exploring how individuals with chronic illness leverage the social web" . . .
But, first, do the people doing this study realize that this is NOT SOCIAL but medical that lyme patients are here for since there are very few doctors in the country who are knowledgeable or willing to treat chronic lyme?
To put this is a SOCIAL category totally misses the point. The doctors have failed. We are here to learn MEDICAL information in order to save our lives.
This is not for fun and games. While support may be part of this, do not kid yourself, we are primarily here for MEDICAL reasons. If we were not sick to begin with we would not seek support from others whom doctors also failed. We'd be out having a normal life.
To navigate the web regarding learning about chronic lyme is equal to being tossed full force into a 16-credit post-graduate level course of study.
I'm not here to make friends (but appreciate cordiality, of course, with other posters). I'm here to learn how to save my life. If the people doing this study think otherwise, they underestimate the task that we face.
-----
Rather than email you, is there first a web site where we can see the questionnaire to be used without giving up our computer ID number and email?
Thanks so much for your efforts in understanding the nature of our quest. I used to teach journalism at the college level. Learning how to save my life - on my own - is much harder than any of the semesters I spent in college either as as student or as a teacher.
I clearly do not mean to put you off but rather be sure that, somehow such a survey can really serve to enhance the lives of those with lyme. So much tears us down, it'd be so great if some survey actually could show what we are up against.
But we first need to know just who is funding this and why -- and, then, where the information will go from there.
-
[ 06-05-2009, 06:05 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Katie,
Before you or anyone in your group surveys lyme patients, I ask that you all become acquainted with the challenge that we all face.
You must know this in order to have a good survey. thanks for your consideration. All this may seem like a lot to read but, believe me, it is just the tip of the iceberg.
There may be places where it sounds like I'm talking to you like a patient. I can't go through and edit out those parts so, just understand that these are some links that help a new person gain a better understanding of tick-borne infections - after their doctor has failed them.
You might also keep these links for yourself, friends and family so that you can avoid ever being on this end of it.
It is a tape of a great show on lyme disease done by a Boston TV station a few months ago.
=================
These first 3 posts may not mean much but, after you read a bit, you'll see that getting proper diagnosis and treatment has been very difficult for lyme and TBD (tick-borne disease) patients. You might just want to glance a the top three threads to get an idea of what is being done to help change that.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -(author's details at link)
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
Meet the players
The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, (and)
and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties. ( www.ilads.org )
ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, (especially)
especially when treatment is delayed because of commonly encountered diagnostic difficulties ( http://www.ilads.org/guidelines.html - Accessed April 6, 2007).
. . .
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- Full article at link above, containing MUCH more detailed information.
-===
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
International Lyme and Associated Diseases Society
=====================
For comparison, you can also look up the IDSA but that is not the group who knows enough about lyme as is evident the more you read from the ILADS researchers.
May 2008 Volume 39 Number 5 LABMEDICINE www.labmedicine.com - American Society for Clinical Pathology
CHRONIC BACTERIAL AND VIRAL INFECTIONS IN NEURODEGENERATIVE AND NEUROBEHAVIORAL DISEASES
- by Garth Nicolson, Ph.D.
=========================
AFTER reading the articles above this will make more sense and, sadly, shows the state of treatment (and - with the new committee gathered, it is still a horrible situation for there are no real experts on the new panel):
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
- In the menu to the left of their home page, you can order DVDs of past ILADS seminars. You might also be able to borrow some from your local lyme support group.
This are invaluable to understanding how these infections work. And, none of this is taught in medical schools. None.
===================
This book, by an ILADS member LLMD, holds great information about treatments options and support measures:
DVD is $40. and worth every penny. It explains a lot.
=================
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
posted
Hi, More information would be appreciated. This could be an opportunity to educate people. Kate I would like to recommend that you and Professor Mankoff view the film "Under our Skin." I have some of the links below.
Take Care, Ann " Lyme disease is growing at four times the rate of AIDS and is quickly becoming our nation's most misdiagnosed and fastest-growing infectious disease. People are becoming permanently disabled, even dying. Educating the public and physicians regarding the disease and the progression of treatment is essential."
I will explain some of this by responding to Keebler's post, but I hope that this addresses general concerns.
I am very sorry that this struck a negative response, it was not my intention to be vague to cover up; instead, I wanted to be brief and to the point, and let people ask if they had questions.
As a brief introduction, this study is part of a research project, on which Professor Jen Mankoff is the primary investigator. You can get some context of her research projects in general on her website: http://www.cs.cmu.edu/~jmankoff/research.shtml. I am a student on this project.
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.
Keebler, when I read your statement, ``To navigate the web regarding learning about chronic lyme is equal to being tossed full force into a 16-credit post-graduate level course of study,'' I felt like I had done an especially poor job communicating, because 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.
``THE SOCIAL WEB'': Here, I refer to the idea of a community as part of the ``social web.'' I have read many threads on the LymeNet community; I understand that it is not about ``fun and games,'' and I apologize for being unclear in my post.
But, as a medium, LymeNet flash is a forum - a community - and that makes it a ``social'' website, as opposed to a ``static'' website, like, say, the ILADS or the CDC websites, which are both mainly websites with pages of information.
When I write ``leveraging the social web'' I mean individuals using such resources as this community to help one another do something; in this case, learn about diagnosis and treatment options when it comes to Lyme disease.
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. Please consider helping us by participating.
charlie
Frequent Contributor (1K+ posts)
Member # 25
posted
....As for me, I didn't take it negatively at all...I just knew that many of us would have at best only a vague idea of what you were asking about. Thanks for clarifying.
Charlie
Posts: 2804 | From Texas | Registered: Oct 2000
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
(The other did not work because of the period a the end.)
--------
Katie,
thanks for your letter. I am far too tired to reply as fully as I would like. However, I apologize if my tone was harsh, I just wanted to be clear.
I don't think your tone was harsh but that we are just up against so much and don't have energy for anything that is not likely to help in some way and we need to know who is funding this.
It will take a while to read the link but, thanks so much for your speedy reply. I look forward to reading it later.
Thanks for your PM, too. I'm just too tired now to answer. Later.
Thank you for the links and references. I will read them carefully.
I have been reading materials about Lyme disease since January. I began with Cure Unknown, and then read medical articles, webpages, blogs, and many threads made in this community. I welcome new information, of course!
We wanted to study chronic Lyme disease because of the kind of information we found online, and how difficult it was to navigate what to believe. It sparked the idea of building a tool to help people navigate such uncertain territories.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Who is building this tool? What experts will you have on board?
Not meaning to be harsh, I just wonder who? This could be very exciting - or it could crash down hard - just wondering who is steering this project . . . but more from the link, I guess. Sorry, I have to rest before I can read more.
The research project is in Human-Computer Interaction, so we are not only researching how people interact with the web, but we also have computer science backgrounds, and can construct applications and websites.
As the study is in its beginnings, it does not have a web page. Professor Mankoff's research page shows all her projects in general.
The study is about chronic Lyme disease specifically, and the research project is about helping individuals with chronic illness in general.
The interview/survey ask questions about what kind of resources are used to help manage Lyme, such as organizations or support groups, both online and offline, treatment plan changes, and so on. We do not force participants to answer questions they are uncomfortable with.
We want to learn from the participants' experiences, specifically with Lyme disease, and what role various online resources played in those experiences.
Sorry I am not more specific, but that is an accurate summary of the kinds of things we ask. Feel free to email or PM (Private messaging me on this board won't give away any information that isn't already public on here, as far as I understand). All study results - and correspondence - are confidential.
keebler has done an extraordinary job articulating for majority of us our concerns here.
2 things i still did not see answered by you are:
1. WHO is paying for this? 2, How will results be used?
i went to direct link you had & keebler's CORRECTED LINK; all it talks about is energy.
i'm like keebler, i'd like to see the actual q/a before i would agree to participate in anything. it's not about the $10 given to us.
it goes far beyond that. the lyme community has been suckered, that's only word i can think of presently, into doing things lie this, and then people doing this USED THIS INFO AGAINST US, LYME PATIENT COMMUNITY.
we are super-cautious and need every i and t dotted and crossed.
i also would feel better if you would EDIT your signature line and show the words you used above about the "leverage social web".
sorry, but for us severely NEURO challenged patients of decades of chronic lyme, we just can't understand wordage like this.
if the survey is anything like your post above, majority of us will have problems comprehending and reading it.
so i'm like keebler, i'd like to see the full survey of Q/A listed.
also, lymenet has a lot of specific links/ACCURATE INFO, drs. journals...can't remember that word either right now.
yet you show NIH & CDC; do you have any idea how OUTDATED some of these "reputable" sites are? it's sad.
thanks katie; we just need much more than your average person you would deal with since we've gone MANY DECADES MISDIAGNOSED!!
me 39,5 yrs; 34.5 yrs. MISDIAGNOSED by 40-50 drs; we don't trust well anymore.
that's my story, and i'm sticking to it lol
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posted
Katie, the reason you are being questioned is that there have been several medical journal articles describing lyme internet information as false and misleading, and doctors who are uninformed regularly tell us to stay off the internet.
We would not want this one to turn out the same way, and having put the noose around our own necks by cooperating.
If you can find a way to demonstrate it won't hurt us, maybe you will get some takers.
Posts: 8430 | From Not available | Registered: Oct 2000
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Katie,
Thanks for sending the sample questions by PM so that I can get a better sense.
While open-ended questions are good, from just the few you sent me, I see that they will take a tremendous amount of time and effort to answer.
While it's great that questions ask for full answers, you will need to know that it may take someone a week to answer the survey. It could not be done in one sitting, or even a couple.
I will get back to you in a few days. Still, we would definitely need to know who is asking, why and what they will do with this information. Who will own our answers?
We would not open our front door to a stranger and answer all sorts of questions. Same goes for computer. Even with the fabulous reputation of your university, it's important for us to know more about who we are opening up to with such candid information - especially when it's not really confidential if we don't know who we will be talking to, after all.
Thanks so very much for your interest. Please understand the legitimate concerns here as we work to learn more about this. Please stay in touch.
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[ 06-06-2009, 03:31 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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bettyg
Unregistered
posted
katie,
1 more source of VALUABLE info is this NEW book,
PJ LANGHOFF'S THE BAKER'S DOZEN, lunatic fringe, junk science..... it's ALL about the IDSA, infectious disease society of america/infectious drs.
it has over 1000 REPUTABLE links from public sources of REFUTTING everything the infectious drs. have said for decades!
if you really want to learn about the complete lyme WAR controversy, please buy it on amazon.com NOW.
you'll be amazed at what is in there!!
the gist of what i get having reread your top posts & additional comments is this:
you're doing this specifically on www.lymenet.org web site since people get and give advise here which your employer feels is "INCOMPLETE and not accurate".
how do we know what is accurate/accountable vs. just spouting off ? is this correct? thanks...betty
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I'm Jennifer Mankoff, the faculty member who is leading this research effort. Katie is my student this summer. Just to tell you a little bit about myself:
- I have lyme disease. I believe I contracted Lyme in 2006, and was diagnosed in 2007 with a CDC-positive Western blot. I am currently being treated by a LLMD.
- My research is human centered and has included both energy and health work in the past (focused on people with disabilities).
- My work on chronic health issues is a new project, conceived from my own experiences with Lyme disease.
- Because this is a new project it is still unfunded. I am paying for it out of discretionary funds intended to support computing research in general.
- I have never accepted funding that gives my funders any control over my results, what I publish, or where I publish.
- All of the people working on the project are required to do extensive reading on lyme disease, including the history, current controversy, and so on as represented online, and in books such as Cure Unknown.
- We are not medical doctors, and it is not our intent to make judgments or claims about the truth of the statements on any of the websites that folks use.
Thank you for taking the time to consider our request for participants.
I understand that we are asking for a sacrifice of time and energy that may be difficult, and we will try to be as sensitive to that issue as possible.
If you choose to participate you may withdraw at any time with no penalty.
Jen
Posts: 16 | From Pittsburgh | Registered: Jul 2008
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bettyg
Unregistered
posted
jen,
hi; i just saw an update here so thought i'd check it out.
jen, can you send keebler & me by private message using lymenets's PM, it's 2 people standing together,
the actual study so we can read it ourselves; then we can ENCOURAGE others to participate based upon what we read in it vs. THE UNKNOWN.
keebler stated she is a former journalist; i'm a former secretary but extremely active in POLITICAL SCENE.
or better yet, send a copy of your study to LYME DISESASE ASSN. PRES. PAT SMITH for her to read and recommend.
pat's been around this 1-2 decades now & has her finger on everything.
none of us are going to enter something without knowing ALL details first; we've been stung to many times as i'm sure YOU have as a lyme patient yourself.
it is commendable what you are trying to do jen we'd like to work with and help your study.
we just need MORE detailed info! thanks for understanding where many of us are coming from hug
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Jen,
Thanks so much for your note and your links. I have a few basic questions regarding your philosophy about lyme.
On your blog: ( http://gotlyme.wordpress.com ) under your menu "Del.icio.us links" there is one link from that leads to information that is contrary to what many lyme researchers have concluded about lyme and lyme testing.
By posting this link on your blog, it indicates that you are of the same mind and agree with these statements:
* that there is always a way to scientifically prove existence of the bacteria (testing solely through the PCR developed by this doctor)
* that a cure is expected for 88% of patients within 56 days.
* Treatment should be denied where there is no scientific proof of borrelia (again, testing solely with the PCR test as measure).
1. We believe in accurate, scientific testing for lyme disease and diagnosis.
2. . . . The bottom line is we will not diagnose nor treat you for Lyme's disease, until we scientifically prove you have the bacteria.
. . .
5. Our experience shows that 88% of our Lyme patients are cured within 56 days.
. . .
Ultimately we have cured 95% of our patients. In our experience, about 5% of patients, are not cured. We simply don't know why.
. . .
6. We will work with you until we have scientific proof that Lyme disease is cured.
. . .
=============
In light of your endorsing these statements, there are many questions about your thoughts on chronic lyme, then. According to the site you recommend, it could not be scientifically proven and it would also be a very, very small percentage of patients affected (5%).
According to many researchers, considering the life cycle of borrelia, a cure is not possible within 56 days when treating all forms and cycles of Bb.
From your connections, though, you've seen people who have been cured of lyme in 56 days? Did they have any relapses? Were they able to resume life just as before they became ill - or did they have to ease back into it.
What about that 56 day treatment is the key? How many have maintained that? It really is wonderful that there is such success and it'd be so good to hear more about that.
My concern is that from all I've studied, the above statements pose problems, especially for patients told they could not possibly have lyme if the tests don't show it and, therefore, are denied treatment that could be life-saving.
Are those who are still ill but with no scientific proof of lyme told they really are not ill because a test says so? According to top experts in the field there is no one test that is that good.
I know you do not write these words but you endorse them. Considering that you are embarking on a project for chronic lyme, to endorse a site that does not believe in its existence - or worse, denies treatment that may help patients avoid lyme from becoming chronic - well, this creates some questions.
Another link endorsed on your blog is all about women with fibromyalgia ( http://www.chronicbabe.com ). Currently, they celebrate National Fibromyalgia Day - but there is no mention that, for many, fibromyagia has been misdiagnosed and often turns out to be lyme disease.
It is perplexing that your blog endorses this absence of this information and the effect of that, literally, can ruin lives. True, not all FM is lyme but no where is anyone alerted to the fact that, often, it is and, with proper lyme treatment, "FM" patients can get better.
There are many questions even beyond this about your philosophy of chronic lyme and still, why this survey is needed and what is it hoped to achieve.
-
[ 06-06-2009, 08:09 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Even the National Fibromyalgia Assoiciation people are aware of the possible Lyme/fibro connection. They posted in their aware newsletter. They sent me a copy and are very helpful.
-------------------- If you keep doing nothing...nothing changes!
posted
Read their personal blog posts, I think it is obvious they believe in chronic Lyme from them despite some of odd links they have on their site.
Those links on their are simply their delicious.com (online bookmarkine site) recent links that are tagged with "lyme". You can see they are obviously researching lyme a lot from their collection of bookmarks at: http://delicious.com/jmankoff/lyme
The first "lyme" bookmark was from back in 2007 and contains all sorts of useful stuff along with some not so useful stuff. They just look like any of us here trying to best sort through this mess of having to be their own doctor.
Posts: 526 | From NJ | Registered: May 2007
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posted
Well, it sounds like their hearts are in the right place but maybe the questionnaire needs some revising if it will take so much time. I once cooperated with a student doing a project related to lyme and got very tired halfway thru. It was just too long, needed to be more focused. Having not seen the questionnaire for this project, I can't say for sure that is the situation here too.
But since Keebler has a journalism background, maybe she would be willing to do a little revising? Just to shorten/focus it and not use so much patient energy/time? Or if this is asking too much of our always helpful Keebler, perhaps the orginators of the questionnaire might give it another look.
Posts: 8430 | From Not available | Registered: Oct 2000
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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radfaraf,
Thanks you your note about the tags to other links. I did not see them. I went back enlarged the page and could then see some words, but my eyes cannot separate them out - it is just a swirling blur with all the words together and different size font.
Since I could not distinguish any one word from another, I first thought it was some sort of art design.
I had gone to the first two links, listed at the very top of that blog page, with bullets the Del.icio.us links. The assumption I make is that since these two welcome the reader, this is what the blog is saying about their philosophy. By their position on the blog, they are introducing these as the experts, one as medical advice and the other as personal advice.
Thanks for bring to my attention that there are many other links for those with eyes that are not affected by inner ear dysfunction.
Still, I'm not sure I understand the purpose of the project, the intended benefits or possible risks. I would proceed more comfortably if this had the backing of the LDA.
---
Lou,
Thanks for your thoughts. I would not mind looking over the full survey but it's already complete.
Anyone can take the survey now. It is available.
The link to email for that is in the first post. It's already a complete package and ready to go for anyone wanting to do this through their personal email.
-
[ 06-07-2009, 02:16 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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bettyg
Unregistered
posted
jen, what do you men by this?
"If you choose to participate you may withdraw at any time with no penalty." without penalty??
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Hi Katie and Jen,
Thank you for being patient with everyone. Lyme advocates tend to be leery of study recruitment because we have had a history of our experiences being used against us.
It sounds like your study falls under the category of information science, measuring how people find, retrieve, evaluate, and use information -- in this case, Lyme information on the Internet.
I am assuming that, by "social Web," you were talking about information sharing on the Internet, what is often called Web 2.0 We don't just read webpages on Lymenet, but we provide feedback and create our own information. We also provide support merely by all having similar experiences, so that people don't feel so alone.
I would only add (and I have spoken to MLA representatives a little about this) that the rules change slightly when you are talking about emerging diseases. The most stable, trusted websites (such as government or major medical institution sites) only include information that has become standardized, i.e. it has gone through many repetitions in various formats and gone pretty much unchallenged.
Incomplete research on a disease demands looking for more recent information, which would be seen as controversial or experimental by mainstream organizations. It is not necessarily wrong or right, just new. Less authoritative information may be taken into consideration when the alternative is to not receive adequate treatment.
Patients acting on this newer information are at risk of doing themselves harm, but they are already at risk of harm from the disease itself.
I think your work could help inform people to be careful of new information, to know what red flags to look out for, and to become as fully informed as possible before deciding on a treatment plan. Good luck with your study.
shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Keebler,
I would bet that their Delicious links are just being saved as references for their paper, and do not necessarily reflect what they believe about Lyme disease. Like my archive has plenty of articles that don't necessarily reflect my views.
Peace, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Bettyg,
I'll bet it means you won't have to give the $$$ back if you decide not to play anymore!
Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Hey charlie,
"Leveraging the social Web"
equals
"Using interactive websites such as Lymenet to get the information you can use"
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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bettyg
Unregistered
posted
keebler, thx for doing this now!
i asked jen if she would contact you and follow thru since you/i had concerns and i'm still SWAMPED with my pc/phone service coming & going this past week!!
as time permits and i get caught up, i'll take her test then!!
so folks...take keebler's advise ok; you know she RESEARCHES the heck out things to make sure it will BENEFIT US, the patients ok.
jen/katie ... hoping you get many replies now! xox
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I emailed her when this was first posted but never heard back.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
FWIW- I'm in the process of filling out the survey.....
When I hit "next" after checking a very long page full of answers, I was sent back to the beginning.
I was able to select "next" and my answers remained filled in until I came back to that page.
As I am once again filling in the answers to all of those questions, I've noticed that a few changes have been made.
I would really like to help Dr. Mankoff with her study because I do believe that she is trying to help find a better way to obtain useful information in a faster, more efficient manner.
I agreed wholeheartedly with her assessment of Internet usage and the risks/benefits involved, at the Greater NY Neuroborreliosis Support Group Meeting in May.
She impressed me as being sincerely concerned about the tangled mess of available information that neurologically impaired Lyme disease sufferers are faced with sorting through, in order to obtain the information they so desperately need to be able to help themselves.
As I have been putting considerable thought into my responses, I would appreciate if you would refrain from making any further changes to the survey questions for a while so that I may hopefully avoid having that little glitch recur.
I'm not certain that my frustration tolerance level would allow me to complete the entire page a third time.
Thanks for your anticipated consideration. Ali
[ 07-08-2009, 01:59 PM: Message edited by: AliG ]
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
OK, I've finished...BUT I received the following message after submission:
quote:Upgrade in Progress
We are currently in the process of performing emergency maintenance.
We should be finished very shortly. Thanks for your patience!
I'm not sure that this is a good sign. I sincerely hope it doesn't mean that ALL of my info has been lost.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I re-sent the info & I believe that it has been accepted. Hopefully my responses are now included in your survey.
Good luck Katie. I hope that you & Dr. Mankoff are able to make some kind of difference in the tedious task of identifying source credibility and avoiding unscrupulous predators for us.
Best Wishes, Ali
[ 07-08-2009, 04:19 PM: Message edited by: AliG ]
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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I emailed you again - maybe the email was caught in a spam folder somewhere along the way... sorry about that! Please let me know if you don't get a message from me again.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
i completed mine today; took 30 minutes for the areas writing in blanks with many illneses/symptoms!
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
"...this study is part of a research project, on which Professor Jen Mankoff is the primary investigator."
I believe Professor Jen Mankoff is a member of the Pennsylvnia Lyme support yahoo group. I believe she's on the same merry-go-round many here have been on...has exposure and symptoms, but is being told by IDSA physicians at the "best" institutions that there's no way she could have Lyme disease. If I remember correctly, she may also have a child with sympoms after tick exposure in that endemic area.
I participated in a phone interview several months ago with Katie Kuksenok under the guidance of Professor Jen Mankoff. I was paid $10.00 for my participation.
I believe I was one of the first people they surveyed.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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bettyg
Unregistered
posted
h mom,
yes, they do phone/text interviews at $10/hr. up to 2 hrs. $20 max.
OR a diary survey of 2 weeks for $10 total....
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posted
Hi all, I just realized that we had never posted the results of our efforts. In the end, we were able to complete a survey of 128 individuals with Lyme disease, from across the country, along with interviews with 21 of those people. We have far more to say about the data than I can fit here.
But what differentiated this work from much of the other work presented at WISH and CHI (where we published it) was its focus on the patient viewpoint, the patient use of data, and how we can facilitate that. A lot of related studies seem to focus on a broken patient process or simply about doctors.
Our study included primarily people who had successfully navigated the Lyme space. We have a lot to learn from the success stories. Our participants were sophisticated with respect to their use of online content, and often activists or volunteers who were doing their best to help others with Lyme disease.
Online information can be confusing and contradictory, but successful strategies used by our participants included triangulating information by checking for corroboration in multiple settings and also stepping back from online information when they sensed that it was not helpful or even depressing.
We published a second paper inspired in part by this forum on the difficulty for end users in enforcing accessibility rules that meet their needs in a world where more and more content is created by end users.
Here are references to both publications. PM me if you want the full text.
Katie Kuksenok, Michael Brooks, Jennifer Mankoff: Accessible online content creation by end users. CHI 2013: 59-68
Jennifer Mankoff, Kateryna Kuksenok, Sara B. Kiesler, Jennifer A. Rode, Kelly Waldman: Competing online viewpoints and models of chronic illness. CHI 2011: 589-598
I am grateful to everyone who contributed to this study, despite the many draws on their time in coping with a chronic illness. I hope we will be able to use these results to build better search tools and other support for the types of strategies we found. We are working on that this summer.
But the thing that touched me the most was the activism and volunteerism present in the community. We all benefit from those efforts, and to see them over and over again despite the tremendous energy it takes to simply get through this illness is truly inspiring.
posted
Does this have anything to do with the other paper that someone was going to write ?
Posts: 238 | From Where | Registered: Aug 2012
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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.
-----------------------------------------------
Unfortunately, the authors seem to think that all those with lyme wish to be indentified as "lymies" --
not helpful at all for understanding and I take this as a demeaning insult - but it matches with what most IDSA doctors think so it should have been no surprise.
No one would call cancer patients "cancies" just because they seek out more information about their illness or form a support group due were that to be due to failure of the medical profession, at large - as it has been with lyme and tick-borne disease.
Pointing out the "negative feedback" those with lyme get from the medical world also makes them sound lacking in character and intelligence, like the "negative feedback" is deserved, somehow so then patients storm off and form a little club.
They could have drawn upon Lorraine Johnson and Pamela Weintraub's work to shed some light but the goal here did not seem to be finding the truth, just petpetuating misperceptions about those with lyme.
This entire paper was more about looking at how those on line behave, not so much about WHY we need to look elsewhere - and who the real experts are to whom we look. This is not some treehouse gang that we just made up out of summer boredom.
Why they negleted that is beyond me and very sad. Were Johnson, Weintraub, MacDonald and others of similar cailber to have been consulted, this could have had some kind of purpose. This misses the point.
Competing online viewpoints and models of chronic illness.
Excerpt: Page 8; column 1; paragraph 2:
. . . Over time, participants began to take on what Castells characterizes as a “defensive identity” that can lead to the formation of a community designed to resist, and ultimately change, the current cultural norm [9].
Thus the negative feedback participants received
led them to identify with a new community of people, “Lymies,” as they developed a new understanding of their disease. . . . (end excerpt).
--------
The second paper also contains some misconceptions & out of context "observations" - just one example is the criticism of asking posters to not type in all CAPS & to break up their posts. Authors concluded this was "control behavior" when in fact, if they had just asked us here,
they would have known this request is due to the vision issues for many here. Many can't read paragraphs of more that about 3 1/2 lines.
So, if someone posts solid text or all caps, few will be able to read it. It's not about control. It's about vision and courtesy. -
[ 08-05-2013, 05:08 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- The finished report recently came out. Thought most here wanted to see what is published.
Simply updating this thread with the publication link and excerpts from the authors - about those with lyme.
This is an educational site, after all. This is for education. We should know what the universities are publishing about those who are trying to manage their journey through all this.
And, if the authors happen to come by, it's important that they consider the effects of using derogatory nicknames for those who just want to learn more - who MUST learn more - because the "regular" world of medicine has turned its back. -
[ 08-04-2013, 12:14 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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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
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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
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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: 13117 | From San Francisco | Registered: May 2006
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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
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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
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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: 13117 | From San Francisco | Registered: May 2006
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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
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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 ]
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