Understanding the Psychological Well-Being of People with Chronic, Invisible Illnesses

SUTP Research Psychological WellBeingStanding Up to POTS is proud to be investigating the psychological well-being of persons with chronic illness in an attempt to better understand quality of life issues.  We know that people living with chronic illness have a unique set of issues that require special care, and thank you for helping us with this research project.

This study has been exempted by the Wittenberg University Institutional Review Board (U.S. DHHS IORG0008550).  If you have questions about this survey, you can send them to Dr. Cathy Pederson at This email address is being protected from spambots. You need JavaScript enabled to view it. or the Wittenberg Institutional Review Board Chair, Dr. Darby Hiller-Freund at This email address is being protected from spambots. You need JavaScript enabled to view it. or call Dr. Hiller-Freund at 937-327-7930.  Results from this survey will be published in the scientific literature.  Links to the abstracts and articles will be disseminated through the Standing Up to POTS Facebook page and website as they get published.

You must be at least 18 years old and have a chronic invisible illness to participate in this survey.  Before you can start the survey, please read the informed consent form and give consent to participate in the study. 

Informed Consent Form

Understanding the Psychological Well-Being of People with Chronic, Invisible Illnesses

  What is the purpose of this study?  

This survey will include people with chronic, invisible illness like postural orthostatic tachycardia syndrome, fibromyalgia, chronic fatigue syndrome, myalgic encephalomyelitis, mast cell activation syndrome, Lyme disease and Ehlers-Danlos syndrome.  The purpose of this study is to better understand the psychological well-being of chronically ill individuals.  

 What do I have to do to participate?  

If you agree to participate in this study, you will be asked to fill out an online survey with questions about your physical and mental health.  It generally takes less than 20 minutes to complete this survey. 

What are the benefits of participating in this study?

Standing Up to POTS has an impressive publication record from these studies in the past couple of years.  Data from this study will be published in scientific journals to increase awareness about quality of life issues for people with chronic invisible illnesses.  Unfortunately, we cannot compensate you for your participation. 

What risks are associated with this study?   

There is minimal physical or social risk for this study.  This study can be completed from a computer or mobile device at a time and place of your choosing. 

If the questions make you uncomfortable, you may choose not to answer them.  If questions trigger a sense of hopelessness or increase suicidal ideation, please call the National Suicide Prevention Lifeline at 1-800-273–TALK (8255) to speak with a counsellor. They are available 24 hours a day, 7 days a week and are professionally trained to listen and get you the appropriate help.   You can also text HOPELINE at 741741 with the word "start" to text with a live, trained specialist.  HOPELINE Text Line serves anyone in any type of situation, providing access to free, 24/7 emotional support and information via text message.

Will my personal information remain confidential?  

Your answers will be kept confidential.  We will NOT ask for your name, address, email, or social security number.  Therefore, your personal information will never be associated with your data during analysis or in publication of the results.  We will place you into a group based on your overall physical or psychological health, and use your answers to compare differences between our groups. 

What will happen if you decide to stop participation in this study? 

It is your right to withdraw from this study at any time.  If you decide to withdraw, please stop filling out the survey and close your browser.  

Who should I contact if I have questions? 

If you should have any questions about this research study, you can send them to Dr. Cathy Pederson at This email address is being protected from spambots. You need JavaScript enabled to view it. or Wittenberg Institutional Review Board Chair Dr. Darby Hiller-Freund at This email address is being protected from spambots. You need JavaScript enabled to view it. or you may call Dr. Hiller-Freund at 937-327-7930.

STATEMENT BY PERSON AGREEING TO PARTICIPATE IN THIS STUDY

I am 18 years or older, I have a chronic illness, and I agree to participate in this study.

I do not qualify, or am not interested in participating in this study. I will stop now and close my browser.