The Chronic Illness Survey is a research project designed to gather information about those who suffer from chronic multisymptom illness, such as ME/CFS, fibromyalgia, toxic mold illness, chronic Lyme, CIRS, MCS, POTS, MS, autism and other similar diseases.
A main goal is to look at reproductive issues that people with this sort of illness have faced, with regard to fertility as well as the health of any children that that they have had.
The survey also includes questions on risk factors for acquiring the illness as well as other topics.
How Do I Take The Survey?
The survey is available online through Survey Gizmo at the following address:
Am I Qualified To Participate?
Anyone with any kind of chronic multisymptom illness and who is age 18 or over is welcome to participate.
Who is the Sponsor?
In order to make sure that the study is done in accordance with standard ethical research guidelines to protect human subjects, as well as to fulfill a requirement for publication of the results in many academic journals, the Chronic Illness Survey project has requested and received an Institutional Review Board (IRB) approval as an Exempt research project through Northwestern University.
The principal investigator (PI) on the project is Paul Wang, Ph.D., an associate professor in the Medill School of Journalism at Northwestern University.
The co-researcher is Lisa Petrison, Ph.D., the executive director of Paradigm Change.
The Northwestern University study number is STU00203199.
A letter from the lead researcher about the survey is available.
How Long Does The Survey Take?
The basic survey is estimated to take about seven minutes to complete.
In addition, those with children should anticipate taking about three additional minutes per child.
Those with cognitive dysfunction may find that the survey takes longer for them to finish. Reports suggest that people typically are taking 10-30 minutes.
Can More Than One Person In My Family Take The Survey?
That would be fine, as long as all are age 18 or older.
What Are The Benefits Of Participation?
The main goal of the project is to gather in a systematic way the experiences of those with chronic illness.
The goal is to look specifically at three main issues:
* Fertility issues experienced by individuals with this sort of chronic illness.
* Health issues experienced by children of individuals with this sort of chronic illness.
* Risk factors for acquiring this sort of chronic illness.
This research may lead to more understanding of this type of disease and possibly to improved prevention or treatment strategies in the future.
What If I Don’t Want To Answer A Particular Question?
All of the questions on the survey are optional.
If you don’t want to answer a question – or if you’re not able to answer it – then please feel free to just skip it and move on to the next question.
However, the survey results will be much more helpful if all respondents provide as much data as possible, so please do answer all the questions insofar as you are able and feel comfortable doing so.
Will The Results Be Made Public?
Yes, the results of the survey will be made available to the public.
Our hope is that this will be through a peer-reviewed published paper. Otherwise, the results will be summarized and shared publicly in a white paper.
Please check back on the Paradigm Change website for more details.
Can I Look At the Survey in Advance of Taking It?
Yes, a list of the Chronic Illness Survey questions and response alternatives is available at this link.
What About Privacy & Confidentiality Issues?
This is an anonymous survey.
Results will be reported in such a way that the identities of individual participants will not be able to be guessed.
Questions or concerns about confidentiality or privacy issues related to this project are welcome.
Are There Any Risks In Participating?
Thinking back over one’s own health history can have either positive or negative effects on one’s own sense of spiritual and emotional well-being. We nonetheless hope that the process of taking the survey will be a positive one for all concerned, and have structured the questions with that goal in mind.
Other than that, we cannot think of any risks.
What Else Should I Know?
Each person should take the survey only one time.
The survey is written only in English, and so unfortunately that could be a barrier to participation for some individuals.
Unfortunately, we do not have funding to compensate respondents for the time they spend filling out the survey.
What If I Have Other Questions?
Please send all questions about the survey to:
Thanks very much to all who have helped to develop this survey – and to all who help out by participating in it!
Lisa Petrison, Ph.D.
Paul Wang, Ph.D.
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This article was originally published on the Paradigm Change blog, and reader comments about it can be found there.