An Assessment of Demoralization and Depression-like Symptoms Experienced by Individuals with ME and CFS
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ADULT CONSENT TO PARTICIPATE IN RESEARCH
An Assessment of Demoralization and Depression-like Symptoms Experienced by Individuals with ME and CFS
Principal Investigator: Stephanie McManimen, B.S., Research Assistant
Institution: DePaul University, Chicago, Illinois, USA
Department (College): Department of Psychology, College of Science and Health
Faculty Advisor: Leonard A. Jason, Ph.D. Department of Psychology, College of Science and Health
What is the purpose of this research?
We are asking you to be in a research study because we are trying to learn more about the factors that may contribute to demoralization and depression-like symptoms experienced by some individuals with myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). This study is being conducted by Stephanie McManimen, a research assistant at DePaul University.
This research is being supervised by her faculty advisor, Dr. Leonard A. Jason. We hope to include up to 1000 people in the research.
Why are you being asked to be in the research?
You are invited to participate in this study because you are an individual who is diagnosed with ME or CFS. We are looking to document your experiences, how others react to your illness, and the impact of several factors. You must be age 18 or older to be in this study. This study is not approved for the enrollment of people under the age of 18.
What is involved in being in the research study?
If you agree to be in this study, you will be asked to fill out an anonymous online survey for this research study. The survey will ask questions about your demographics and health history. The survey will also ask questions about your experiences with social interactions, access to and quality of healthcare, and attitudes others have towards your illness.
How much time will this take?
This study will take about 90 minutes of your time.
Are there any risks involved in participating in this study?
Being in this study does not involve any risks other than what you would encounter in daily life. You may feel uncomfortable or upset, because some of the questions are sensitive and the topic can provoke strong feelings or emotions. You do not have to answer any question you do not want to. If, at any point in this study you feel that any test question brought up feelings that would compel you to seek counseling outside of this study, you may ask for this referral at any time during the survey via phone or email. You may contact the PI, Stephanie McManimen (773-325-4962,
smcmanim@depaul.edu) or the faculty sponsor, Leonard Jason (
ljason@depaul.edu). If your need for counseling is urgent, you can also be referred to Response Hot Line (1-800-273-8255), a free and confidential local crisis counseling service. However, you would still be responsible for payment for any additional treatments and services provided by the referred clinician or for arranging payment through your medical insurance company or another source.
Are there any benefits to participating in this study?
You will not personally benefit from being in this study. We hope that what we learn will help individuals with ME and CFS and their friends and family.
Can you decide not to participate?
Your participation is voluntary, which means you can choose not to participate. There will be no negative consequences, penalties, or loss of benefits if you decide not to participate or change your mind later and withdraw from the research after you begin participating.
Who will see my study information and how will the confidentiality of the information collected for the research be protected?
The research records will be kept and stored securely. Your information will be combined with information from other people taking part in the study. When we write about the study or publish a paper to share the research with other researchers, we will write about the combined information we have gathered. We will not include your name or any information that will directly identify you. We will make every effort to prevent anyone who is not on the research team from knowing that you gave us information, or what that information is. However, some people might review or copy our records that may identify you in order to make sure we are following the required rules, laws, and regulations. For example, the DePaul University Institutional Review Board may review your information. If they look at our records, they will keep your information confidential.
You should know that there are some circumstances in which we may have to show your information to other people. For example, if a participant calls the research staff for counseling referrals and reports child abuse or neglect or poses a danger to themselves, we will have to report them to the appropriate authorities.
Who should be contacted for more information about the research?
Before you decide whether to accept this invitation to take part in the study, please ask any questions that might come to mind now. Later, if you have questions, suggestions, concerns, or complaints about the study or you want to get additional information or provide input about this research, you can contact the researcher, Stephanie McManimen (773-325-4962,
smcmanim@depaul.edu) or the faculty sponsor, Dr. Leonard Jason (773-325-2018,
ljason@depaul.edu).
This research has been reviewed and approved by the DePaul Institutional Review Board (IRB). If you have questions about your rights as a research subject you may contact Susan Loess-Perez, DePaul University's Director of Research Compliance, in the Office of Research Services at 312-362-7593 or by email at
sloesspe@depaul.edu.
You may also contact DePaul's Office of Research Services if:
? Your questions, concerns, or complaints are not being answered by the research team.
? You cannot reach the research team.
? You want to talk to someone besides the research team.
Statement of Consent from the Subject:
I have read the above information. I have had all my questions and concerns answered via telephone or email. By clicking the box below, I indicate my consent to be in the research.
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