posted
Hi guys, I am interested in doing the my Lyme data survey, but I'm a little nervous about my info. Do you think it is safe to give honest info, such as name, when registering?
posted
Well, I already did the survey, but now Im having second thoughts because it did not seem very well designed to me-- yet it asked for lots of personal info. Im just not exactly sure what they hope to accomplish with the questions they asked-- it would be nice if they clarified their goals-- and the nature and purpose of each question--- before getting so much personal info..
They do now have a list of people and my name is on it, though. LOL....
Im not sure about the survey... if you don't feel comfortable, wait for a while. Go with you gut.
I wish I had waited and done a bit more research before filling it out-- although it may end up being worthwhile.
[ 11-18-2015, 12:50 AM: Message edited by: Robin123 ]
Posts: 696 | From New York | Registered: Aug 2006
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
This organization has built in a number of protections, and if you don't still feel safe, you can use a phony name presumably. That gives them the info to compile if wanted. And if you give them your real name, you still have control of the data. Just read the rules.
They are well known in lyme activism and have published the Lyme Times for years. Lorraine Johnson, who goes to bat for us in high places, is an official.
[ 11-18-2015, 12:51 AM: Message edited by: Robin123 ]
Posts: 2888 | From USA | Registered: Mar 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Lyme Disease.org is an absolutely top notch organization in EVERY way. I would trust any of the board, staff, with my very life. Over the years, they have consistently proved themselves in all ways.
I cannot say enough good about Lyme Disease.org - and I would most certainly put them in the dictionary under the very definition of trustworthy.
Lyme Disease.org deserves the highest respect & honors in their work for those with lyme & tick-borne & stealth infections. -
[ 11-18-2015, 12:52 AM: Message edited by: Robin123 ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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lymeboy
Unregistered
posted
Thank you Keebler. I take your words to heart. Much appreciated. I think I'll do the survey.
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posted
LymeDisease.org is fine - you can trust them.
Their background - it started out with two sick women in N CA who never met! They started a resource room at a hospital. They started a little rag called the Lyme Times, consisting of two pieces of folded paper.
Then they changed their name to CALDA, the CA Lyme Disease Association. They lobbied for and got an advisory group to advise the state of CA re Lyme disease. They made the Lyme Times magazine more elegant, turning it into the premier magazine on Lyme disease that it is today.
If anyone wishes to join LymeDisease.org, you'll receive the quarterly Lyme Times magazine, with excellent reports and analyses on current Lyme/co-infection issues.
Phyllis Mervine, one of the two women in the beginning, then organized all 50 states for online chatsites, most of which are quite active today.
They also lobbied for and got a bill passed protecting CA doctors for treating long-term Lyme disease.
Then a couple years ago, they changed their name to LymeDisease and went national. They currently have a couple great blogs - Touched by Lyme, which is ongoing reporting of stories about people with these illnesses, and the Policy Wonk blog, reporting on politics and science.
They have called for large-scale patient reporting before, when there was a need for it. The last time I recall this being done was when they testified nationally at the hearings called when the Atty General found that the IDSA was monopolizing medical care guidelines.
They have only our best interests at heart, and they're all savvy people. They will keep our info private and anonymous whenever they use it.
I personally think they're owed a tremendous thank you for all the work they do on our behalf!
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
As far as the survey goes, I would not have wasted my time filling it out if I had not had hopes for it.
But, I would give the survey a "C+" in terms of organization, clarity of goals and survey design. Hopefully they will clarify exactly what the goal of the survey research is, and how this research may contribute to a cure. Hopefully someone who is knowledgable in the complicated field of survey research science is designing these questions with a specific goal so that our time is not wasted..
[ 11-18-2015, 12:56 AM: Message edited by: Robin123 ]
Posts: 696 | From New York | Registered: Aug 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
The question of this thread is about Lyme Disease.org and I stand by my comments and agree with poppy and Robin in that Lyme Disease.org is an absolute solid and good organization with our best interest in all they do. -
[ 11-18-2015, 12:58 AM: Message edited by: Robin123 ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I hope everybody has figured out that:
lymeboy (who started this thread) is talking about LymeDisease.org which is the organization doing the patient lyme survey
The thread is supposed to be about LymeDisease.org--the great group doing the survey.
posted
Hi all - complaints coming in about this thread, so I just edited it so that comments here are responsive to the question asked by the original poster, asking about the legitimacy of LymeDisease.org. and concerns about their survey.
I happen to know they're totally legit, Keebler knows that, Poppy and TF also.
Wakeup, it's apparent that you still have questions about the survey - that's fair, and I am going to ask one of the main people at LymeDisease.org if she would like to come onto this thread and answer those questions.
So hold your horses everyone, so to speak, and let's see if we can get some further answers forthcoming.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Hi, I'm Dorothy Leland, Vice-president of LymeDisease.org, and Robin asked me to respond to the questions in this thread. The following responses are taken from the FAQs on our website.You can read more details at the link I will put at the end:
The goal of the MyLymeData study is to create knowledge that can benefit patients with Lyme disease.
Many patients with Lyme disease remain ill after antibiotic treatment. We need to understand why some patients respond to treatment and others don’t.
We also need to understand how Lyme disease progresses, how co-infections affect the illness, how the disease is transmitted, and which treatments are the most effective.
Our ultimate goal is to improve the quality of life for patients with Lyme disease.
New technologies allow patients to pool their data for research. When the data of hundreds or thousands of patients is pooled we can begin to see important patterns about the illness.
Your data, without your name or other identifiers, will be combined with the data of other patients and analyzed to help begin to answer important questions about the course of illness and factors that affect whether patients remain ill or become well.
The LymeDisease.org study team will analyze this data on its own and in partnership with researchers and clinicians who are interested in patient-centered research.
Independent researchers working on patient-centered research projects approved by LymeDisease.org. may also analyze de-identified patient data.
posted
It's ok, lymeboy - you asked a question because you didn't know and people answered you here!
Posts: 13116 | From San Francisco | Registered: May 2006
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lymeboy
Unregistered
posted
Yes, and I appreciate it. Thank you Dorothy!
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Dorothy, thank you -- for all you do -- and to the entire team at LymeDisease.org -- your efforts are so valuable and appreciated. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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