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 [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.
11 thoughts on “Enrolling: NIH Focus Group on PEM”
I have had ME/CFS and fibro for over 12 yrs now . I feel I’m getting worse and my body is giving up on me . I have been diagnosed. I took ME after having glandular fever. I do suffer PEM It feels constant . I try my best everyday to do what I can at home and out side a little shopping locally. This is becoming very difficult as I seem to be in constant PEM. I have not done the cardio pulmonary test yet . But have been thinking of asking my gp if I can have this done . If I can be of any help contact me . Kind regards lorraine Deacons
I’m interested in the study, but was wondering if the call is a conference call between all in the group or calls made individually?
What is the purpose of the study, specifically what will be done with the results?
Will wearable devices be used or will data collection be based on qualitative responses. Or will a quasi-quantitative approach be followed?
Is there an age restriction?
Is there a time limit on how long ago the cardio-pulmonary exercise test is conducted.
Why not put the answer into the post so it’s more comprehensive. Or perhaps a link to official NIH site?
Is MEAction just a channel for conveying info from NIH or are they funded to lead the focus group?
Is there a link to big picture of all the focus groups that are planned? This way patients can decide?
Thanks for your questions. We are trying to share as many ME research participation opportunities as possible on the #MEAction site but are not involved at all in the study so can’t answer questions beyond what’s in the announcement (unless NIH updates the info for the study.) They have clarified that people who have been ill for longer than five years can participate in the PEM study.
Thanks for the clarification. Wish MEAction had a larger role to assist as you have a good social media to the patient community!
I just see self-quantification as a complement to the more formal studies. Grouping folks into clusters is also important.
And I undoubtedly get confused with the links to NIH.
FYI You cannot be ill more than 5 years to participats
I re-read it and didn’t see that info, but realized it’s for the US only, so that let’s me out.
Hi- I just checked, and for this study there isn’t a limit so you can be ill for longer than five years. The inpatient study limits participants to people who have been ill for fewer than five years though.
Ok. I would appreciate learning the rationale for 5 year limit.
Thanks for the answers to my questions, please de-enroll me.
I am going down the wearable, quasi-quantitative path, data collection in the home/minimal inconvenience. Will develop my own use case based on my own time series. That has worked for me early on in establishing boundaries/ minimizing PEM.
I think the focus group is a good idea, so please don’t misconstrue my comments. Given my career,my efforts are just better spent with wearables and self-quantification.
That makes perfect sense. I am a big fan of wearables and n=1 studies to learn about our boundaries. I’ve found HR and HRV to be two useful measurements. This study doesn’t have a limit in regards to how long participants have had ME.
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