“ADULT CONSENT TO PARTICIPATE IN RESEARCH Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Related Mortality- Phase 1

Principal Investigator: Abigail Brown, M.A., Graduate Student

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 myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) related mortality. This study is being conducted by Abigail Brown, a graduate student at DePaul University. This research is being supervised by her faculty advisor, Dr. Leonard A. Jason. We hope to include up to 250 people in Phase 1 of the research.

Why are you being asked to be in the research? You are invited to participate in this study because you knew an individual who was diagnosed with ME or CFS and has since passed away. We are looking to document your experiences as well as the deceased individual’s experiences from your perspective. 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 a confidential online survey for Phase 1 of the research. You also have the option of completing this survey by hard copy. If you choose the hard copy option, it will be sent via postal mail to you.The survey will ask questions about the deceased individual’s demographics and health history. The survey will also ask questions about your demographics and relationship with the deceased individual. At the end of the survey, you will be given the chance to identify yourself and volunteer to participate in Phase 2 of the research. Phase 2 will consist of an in-person or over-the-phone interview. You will consent for Phase 2 at a different time. By consenting to Phase 1 right now, you are not consenting to Phase 2. By identifying yourself at the end of Phase 1, you are not consenting to Phase 2.

How much time will this take? Phase 1 will take about 1 hour 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 a referral at any time during the assessment via phone or email. If your need for counseling is urgent, you can also be referred to a Response Hot Line (1-800-273-8255), a confidential 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. If you choose to identify yourself at the end of Phase 1, 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.

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, Abby Brown (773-325-1164, abrown57@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.

You can print this information to keep for your records.”