March 21, 2020
By Lisa Petrison, Ph.D.
Although the coronavirus COVID-19 has been declared a global pandemic, much is still unknown about key issues with regard to it.
For instance, it is still unclear which kinds of chronic health conditions cause people to be more vulnerable to the virus as well as what the COVID-19 illness experiences of people with specific pre-existing health conditions may look like.
This survey is designed to start to probe into these topics and to learn more about the illness in general.
How Do I Take The Survey?
The survey is available through Survey Gizmo at the following address:
Am I Qualified To Participate?
All individuals who have had any kind of a viral-type infection since December 1, 2019, are encouraged to participate in this survey.
The reason for this is that very few people have been tested for COVID-19 thus far and because COVID-19 may manifest differently in different people, depending on the level of severity and other factors.
Also, if you had an illness prior to December 1, 2019, and believe that it may have been COVID-19, please feel free to fill out the questionnaire focusing on that illness.
Analysis of the data will look at factors such as symptoms and illness course when considering whether COVID-19 may have been a cause of the illness symptoms.
While a primary goal of the survey is to consider how the virus may affect those who already have various chronic illness conditions, other individuals are encouraged to participate in the survey as well in order to provide comparative data and for general information-gathering purposes.
Who Is Sponsoring This Survey?
Previous surveys sponsored by Paradigm Change/Lisa Petrison have received IRB approvals through Northwestern University.
Unfortunately Northwestern is basically shut down at the moment, subsequent to a number of confirmed cases of COVID-19 having been found there and also because it is spring break.
In addition, Illinois Governor J.B. Pritzker has issued an emergency order requiring state residents to stay at home through at least April 7.
Because time is of the essence with regard to this crisis, this wholly anonymous survey is being launched without an IRB attached to it.
It is my hope that an IRB approval may be obtained for it shortly, however.
How Long Does The Survey Take?
The survey is divided into two parts.
The first part includes details of the viral-type illness experience and some additional background questions. It is estimated by Survey Gizmo to take 12 minutes.
A second part asks about various interventions that may have been used to treat the viral-type illness. This part is optional and estimated by Survey Gizmo to take about six minutes.
Survey respondents also may supply a written summary of their illness experiences if they choose.
Can More Than One Person In My Family Take The Survey?
Definitely. However, I am asking everyone who has experienced a viral illness during the time period in question to take the survey separately, so that everyone’s experiences can be considered individually.
If individuals under age 18 have been affected, parents or guardians are invited to fill the survey out on their behalf or with their participation.
Can I Fill Out The Survey On Behalf Of Someone Else?
Those who would like to fill out the survey on behalf of another adult are requested to ask for consent from that individual if he or she is well enough to grant it.
Family members may fill out the survey for those individuals who are currently too ill to grant permission or who have died.
Can I Update My Survey Results As My Illness Progresses?
Yes, when you fill out the survey, you will be asked to choose a Patient Nickname.
Then, if you want to provide more details about your situation later on, you can provide the Patient Nickname so that your new responses can be merged with your earlier ones.
For privacy reasons, please do not use your real name or other name that might identify you as your Patient Nickname.
What If My Illness Was Before December 1, 2019?
Individuals who first became ill prior to December 1, 2019, but who believe that their illness nonetheless may have been caused by COVID-19 may feel free to fill out the survey focusing on that illness.
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.
Can I Take The Survey On My Phone?
The survey may be taken on smart phones or pads as well as on computers.
Note that in the phone version, arrows at the bottom of the page serve as the “Next” and “Back” buttons.
Although the survey should work fine on phones and pads, I suggest using a computer if one is available since it is a little faster to do it that way.
Can I Look At The Survey Questions In Advance?
Yes, the survey questions are available at this link:
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.
What About Privacy & Confidentiality Issues?
This is an anonymous survey and questions have been written with the goal of allowing participants’ identities not to be guessed.
Participants are encouraged to skip any questions that they believe may have the potential of revealing their identity.
Questions or concerns about confidentiality or privacy issues related to this project are welcome.
What Are The Benefits Of Participation?
The main goal of the project is to gather in a systematic way the experiences of chronic illness sufferers and others with illness that may have been caused by COVID-19.
This may lead to a stronger understanding of how this particular virus and other infectious illness may affect these individuals.
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. I 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, I cannot think of any risks since this is an anonymous survey.
What Else Should I Know?
The survey is written only in English, and so unfortunately that could be a barrier to participation for some individuals.
Unfortunately, I 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:
lisapetrison at gmail dot com
Thanks very much to all who have helped to develop this survey – and to all who help out by participating in it.
More About Paradigm Change
Lisa Petrison is the executive director of Paradigm Change. She holds a Ph.D. in marketing/psychology from the Kellogg School of Management at Northwestern University.
Those interested in the topic of this survey may want to read the previous Paradigm Change blog article “Could the Coronavirus Epidemic Have a Toxic Mold Connection?”
Paradigm Change also provides a wide variety of additional information on the topic of the role of mold toxins in chronic illness.
The remarkable life of Erik Johnson (including details about the Lake Tahoe epidemic) is summarized in the book Back from the Edge, written by Lisa Petrison.
A PDF copy of the book is available for free to those signing up for occasional email newsletters from Paradigm Change.
Erik’s approach to mold avoidance is outlined in the book A Beginner’s Guide to Mold Avoidance.
It is available for free in PDF format to those signing up for occasional email newsletters from Mold Avoiders.
The book is also available from Amazon in paperback and Kindle versions.
The new Mold Avoiders discussion forum is run by Paradigm Change and is designed to help those who are seriously interested in pursuing the approach to mold avoidance described in the book to get their questions answered.
Only those who have been approved as Mold Avoiders Participants can read or post in the forum.
The Mold Avoiders Facebook group is designed for more casual conversations among those who are interested in this approach to mold avoidance.
Links on this page are in orange (no underlining).