Open (California, USA) CDC-funded study on children aged 10-17 with ME/CFS

I think researchers should provide more information up-front than this flyer does.

Where are the OMI sites? What specifically are the researchers aiming to investigate? Who are the researchers and what background do they have that will ensure that this study is useful?
 
Dolphin said:
A little bit of background information for what it's worth: the Open Medicine Foundation was originally the charitable arm of the Open Medicine Institute before going its own way after a while.
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I never figured out the relationship between OMI and OMF. I asked one time and I think they may have used the same person to set up both charities. I read somewhere that Vinod Khosla put up the initial money for the research arm of OMI (Andy Kogelnik). Vinod Khosla was a founder of Sun Microsystems and I believe he has a family member with ME/CFS. He attended Rons Davis's 2018 Stanford Working Group Meetings (saw his nameplate in a tweet)
 
Here are the first accounts for the Open Medicine Foundation as far as I recall. There is only one officer listed: Andy Kogelnik
 

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This seems to be the other OMI part involved

OMI - Howard Young Foundation Tick-Borne Illness Center of Excellence
https://www.howardyoungfoundation.org/appeals/tick-borne-illness-center-of-excellence/
The Tick-Borne Illness Center of Excellence will be the foremost center in the Midwest for identifying and treating tick-borne illnesses and advancing medical knowledge. Led by Open Medicine Institute, the Center will feature state-of-the-art diagnostic equipment and advanced researchmethodology, and will work collaboratively with patients, referring physicians and regional specialists.
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Wilhelmina Jenkins said:
I agree. CDC has said that it is expanding its long-running multisite study to include a study of pediatric patients.
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I looked back through some notes. In 2017 CDC put out a solicitation about the ped. portion of the multi-site study. Sometime after that (don't recall exactly when) I believe OMI was given a sole-source contract for this portion of the study.
 
Merged thread

https://www.meaction.net/2020/02/21...medicine/?mc_cid=b809ad9981&mc_eid=83ddbd3a71

#MEAction article:

What: The study is a Multi-site Clinical Assessment of Chronic Fatigue Syndrome (ME/CFS) in Children and Adolescents. The goal of the study is to examine the heterogeneity of children and adolescents (ages 10-17) with ME/CFS in order for clinicians to better diagnose and treat ME/CFS. An at-home saliva sample will be collected to test for cortisol levels, and a blood sample will be taken test for possible biomarkers. Lastly, participants will complete a physical exam with an Open Medicine Institute provider, and answer detailed questionnaires regarding their health and well-being. Individuals that complete the study will receive a $75 gift card.

Who: Children ages 10-17 with diagnosed with ME/CFS or children/ adolescents from different ill comparison groups who are affected by fatigue on a daily basis but never formally received a ME/CFS diagnosis. Approximately 340 participants are needed.

Exclusion criteria for the study are: HIV infection, current pregnancy, or dementia.

Where: The Open Medicine Institute has multiple locations of research:

• San Francisco Bay Area, CA

• Los Angeles, CA

• San Diego, CA

• Chicago, IL

• Northern, WI

• Houston, TX

• Ellicott City, MD

• Greater New York Metro Area, NY

• Northern New Jersey

• Western Connecticut

For more information on the study or to start the enrollment process please contact Katelyn Dallmann at research@openmedicineinstitute.org or 650-433-8930 ext. 3004.
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