2020-2022 Community Advisory Council Announced
Solve M.E. is pleased to announce the inaugural 2020-2022 class of the Community Advisory Council (CAC). Due to overwhelming response to the call for nominations, the CAC has been expanded to 14 members.
The Solve M.E. Community Advisory Council (CAC) is a volunteer working group providing guidance and recommendations on numerous Solve M.E. programs. Members of the CAC work with Solve M.E. staff on issues related to ME/CFS advocacy, education, and engagement, in addition to reviewing applications for funding through the Solve M.E.’s community micro grant program.
Check out your CAC members at: http://go.solvecfs.org/e/192652/cac-/23p7sc/146895406?h=YCxRMgFwfRJqxSR_GXjWQmNFftYdT65IgGJiOiuqsDA
ME/CFS Intramural NIH Study Update from Patient Participant Sanna Stella
Sanna Stella participated in the study led by Dr. Avindra Nath and Dr. Brian Walitt on the NIH campus and has written about her experience for Solve M.E. Below is her most recent patient participant update on the study.
As I had written about this NIH study from a patient participant’s experience before, I thought I would share this brief update. Although I completed my abbreviated second study visit nine months ago and am officially done with this protocol, I still feel very connected to the research team, some other participants, and the study. So last week I was pleased to receive a newsletter the team put together to update study participants, “the 3B19 times.”
The goal of the study, according to the newsletter, is “to explore the clinical and biological phenotypes of PI [post infectious] ME/CFS, which can then help us generate new hypotheses to understand the mechanistic underpinnings of this condition.” The update on the study participants states that there have now been a total of 51 participants, of which 27 were patients and 24 were healthy volunteers. Nineteen patient participants have been adjudicated for the second study visit. So far, 62 individuals from 14 different institutes have been involved in the study. For both, patient and healthy participants, the gender distribution is about even, the ages range from 18 to 60, and they have travelled to the NIH from many states all the way from the East coast to the West coast of the U.S., as well as Ontario, Canada.
Dr. Rebekah Feng addressed findings on the bioenergetics of ME/CFS. She explained the extracellular flux assay, which is one method her team is using to measure mitochondrial function. The mitochondria in our cells produce most of the body’s ATP (adenosine triphosphate). Because ATP is essential for energy production, mitochondrial function is essential as well. Dr. Feng states that the extracellular flux assay “allows us to examine how differently our peripheral blood mononuclear cells are producing energy. Specifically, it measures two variables. The first is oxygen consumption and the second is proton concentration.” Those variables can show whether our cells are using an efficient or inefficient process to produce ATP. Dr. Feng goes on to explain that analyzing the relationship and ratio of rates of these two processes can help her team better understand mitochondrial efficiency in ME/CFS. “We have had some pretty interesting findings,” she said. “Even with the current sample size, the data is still statistically significant.” The findings include changes in mitochondrial function before and after exercise in ME/CFS patient participants. Dr. Feng said the data is evidence that something may be going at the cellular level. One of the next steps for Dr. Feng’s team is exploring bioenergetics in muscle tissue extracted via muscle biopsies and PBMCs (peripheral blood mononuclear cells).
Even though the team is still in the midst of its research, as a patient participant anxious to see some findings that will move ME/CFS progress forward, I appreciate that the research team is keeping in touch with study participants.
If you would like more information on participating in the NIH study, either as healthy volunteer or a person with ME/CFS, click here: http://go.solvecfs.org/e/192652/-/23p7sh/146895406?h=YCxRMgFwfRJqxSR_GXjWQmNFftYdT65IgGJiOiuqsDA