The NIH is currently looking for volunteers with ME/CFS to participate in a focus group that will be used to learn more about PEM in daily life as well as to hear about your experiences with Cardio Pulmonary Exercise Testing (CPET) if you have experienced it.
They are particularly looking for people in the following demographics:
- Under age 30
- African American
The study is run out of the National Institute of Neurological Disorders and Stroke (NINDS). The qualitative expert is Barbara Stussman, a Survey Statistician at the National Center for Complementary and Integrative Health.
How to Participate:
Call (301) 496-1788 or email mecfsema[email protected]. You must reside in the United States to participate.
A focus group is a type of research in which a group of people is asked about their perceptions, opinions, and experiences. For this study, questions about post-exertional malaise will be asked to all the members of the group, who are then free to discuss their answers with each other. Additional questions will be asked of those who have undertaken a Cardio Pulmonary Exercise Test. The focus group will take place over the telephone and will last one to two hours. Each focus group will consist of 3-7 participants. The identity of all participants will be kept confidential. We will use first names only. Participants are not required to use their actual names if they prefer not to. The telephone call will be recorded and transcribed.
To participate, you need to have been diagnosed with ME/CFS, have experienced post-exertional malaise, and be willing to provide the investigative team basic information about yourself. We will also be collecting medical records about your diagnosis. We will help obtain your records and will pay any fees if necessary. Participants in the focus group will not be eligible to participate in the NIH study of post-infectious ME/CFS. If you wish to seek to participate in the post-infectious ME/CFS study, you should NOT participate in the focus group. There is no compensation for participating in the focus group.
Anywhere, as the focus groups will be done by phone.