Prof Leonard Jason invites those with ME and CFS & family to take this 15-20 min survey on their opinions of the name and criteria, March 1, 2016

INFORMATION SHEET FOR PARTICIPATION IN RESEARCH STUDY PATIENT SURVEY ON THE NAME AND CRITERIA

Principal Investigator: Laura Nicholson, Research Assistant, Center for Community Research
Institution: DePaul University, USA
Faculty Advisor: Leonard Jason
Research Team: Madison Sunnquist, B.S.

We are conducting a research study to learn more about opinions of  individuals who have Myalgic Encephalomyelitis (ME) or Chronic Fatigue  Syndrome (CFS) on the name and what case definition they prefer for their illness. We are asking you to take the survey because you have a diagnosis of ME or CFS, are a family member of someone who has a
diagnosis of ME or CFS, are a healthcare provider that treats patients with ME or CFS, or are a researcher who studies patients with ME or CFS.

You must speak English and be of 18 years of age or older. If you agree to be in this study, you will be asked to complete a survey. The survey will include questions about your opinions related to the name of your illness and associated case definitions. We will also collect some personal and demographic information about you, such as age, gender, race, marital status, level of schooling, work status, and residential country. The full survey can be completed online. If there is a question you do not want to answer, you may skip it.

This study will take about 15 to 20 minutes of your time. Research data collected from you will be anonymous.

Your participation is voluntary, which means you can choose not to participate. There will be no negative consequences if you decide not to participate or change your mind later after you begin the study. You can exit the survey at any time. Once you enter your responses, we will be unable to remove your data later from the study because all data is
anonymous and we will not know which data belongs to you. At any time prior to submitting your survey responses, you can select ‘reset’ below any question to remove your response to that question from the study.

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.

If you have questions, concerns, or complaints about this study or you want to get additional information or provide input about this research, please contact Laura Nicholson at (773) 325-4154 or by email at lnicho10@depaul.edu

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.