Dear Mr. ********:
We are responding to your email to the National Institute of Neurological Disorders and Stroke, a component of the National Institutes of Health (NIH), concerning myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
You asked if there is an update on the status of the NIH intramural ME/CFS study and the timing of the release of the results. It is still too soon to know when or where that study will be published, but we will share that information when it is available.
We would like to take this opportunity to discuss some of our research in the field of ME/CFS. In 2015 NIH made a commitment to strengthen its efforts to advance research on ME/CFS. As part of these efforts, NIH tapped the Trans-NIH ME/CFS Working Group to lead a multi-Institute research effort. The Working Group has been very active and is working to increase the number of grant applications on ME/CFS submitted to NIH and to increase the number of investigators in the field. The group is also identifying the barriers to performing research on ME/CFS so that strategies can be put in place to overcome these challenges. To learn more about the Trans-NIH ME/CFS Working Group’s efforts, you may wish to visit their website at https://www.nih.gov/mecfs.
To sign up for the Trans-NIH ME/CFS Working Group listserv, visit the website and click on the “Join our listserv” icon on the right side of the page. A Trans-NIH ME/CFS Working Group Advocacy Call was held on August 26th from 3:00-4:00 p.m. EST. You can view a transcript and recording of the call at https://www.nih.gov/mecfs/events under “Past Events.” The Working Group’s newest newsletter from February 2023 is located at the bottom of the following site: https://www.nih.gov/mecfs/mecfs-resources.
NIH supported three ME/CFS Collaborative Research Centers at Columbia, Cornell, and Jackson Laboratories as well as a Data Management Coordinating Center (DMCC) at RTI International for 5 years and issued RFAs to support Centers and a DMCC for another 5 years. Information and updates about the ongoing ME/CFS Centers can be found here: https://mecfs.rti.org/. Webinars from each of the Centers and the DMCC provide overviews of their research: https://www.youtube.com/playlist?list=PLJY2toEjWadPflbHSNYyozKcOlC4HzIcQ. In addition, the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Research Network (MECFSnet) has published two newsletters featuring research news and new and ongoing activities at NIH related to ME/CFS. The newsletters are available at https://mecfs.rti.org/newsletter/.
Finally, it may interest you to know that researchers from Columbia University Mailman School of Public Health and Jackson Laboratory discovered differences in the gut microbiomes of people with ME/CFS compared to healthy controls. These findings add to growing evidence that connects disruptions in the gut microbiome to ME/CFS. You can read about this NIH-funded research in the following press release from February 8, 2023: https://www.nih.gov/news-events/news-releases/studies-find-microbiome-changes-may-be-signature-mecfs.
We hope this information is helpful.
Office of Neuroscience Communications and Engagement
National Institute of Neurological Disorders and Stroke
on behalf of the Trans-NIH ME/CFS Working Group
We are responding to your email to the National Institute of Neurological Disorders and Stroke, a component of the National Institutes of Health (NIH), concerning myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
You asked if there is an update on the status of the NIH intramural ME/CFS study and the timing of the release of the results. It is still too soon to know when or where that study will be published, but we will share that information when it is available.
We would like to take this opportunity to discuss some of our research in the field of ME/CFS. In 2015 NIH made a commitment to strengthen its efforts to advance research on ME/CFS. As part of these efforts, NIH tapped the Trans-NIH ME/CFS Working Group to lead a multi-Institute research effort. The Working Group has been very active and is working to increase the number of grant applications on ME/CFS submitted to NIH and to increase the number of investigators in the field. The group is also identifying the barriers to performing research on ME/CFS so that strategies can be put in place to overcome these challenges. To learn more about the Trans-NIH ME/CFS Working Group’s efforts, you may wish to visit their website at https://www.nih.gov/mecfs.
To sign up for the Trans-NIH ME/CFS Working Group listserv, visit the website and click on the “Join our listserv” icon on the right side of the page. A Trans-NIH ME/CFS Working Group Advocacy Call was held on August 26th from 3:00-4:00 p.m. EST. You can view a transcript and recording of the call at https://www.nih.gov/mecfs/events under “Past Events.” The Working Group’s newest newsletter from February 2023 is located at the bottom of the following site: https://www.nih.gov/mecfs/mecfs-resources.
NIH supported three ME/CFS Collaborative Research Centers at Columbia, Cornell, and Jackson Laboratories as well as a Data Management Coordinating Center (DMCC) at RTI International for 5 years and issued RFAs to support Centers and a DMCC for another 5 years. Information and updates about the ongoing ME/CFS Centers can be found here: https://mecfs.rti.org/. Webinars from each of the Centers and the DMCC provide overviews of their research: https://www.youtube.com/playlist?list=PLJY2toEjWadPflbHSNYyozKcOlC4HzIcQ. In addition, the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Research Network (MECFSnet) has published two newsletters featuring research news and new and ongoing activities at NIH related to ME/CFS. The newsletters are available at https://mecfs.rti.org/newsletter/.
Finally, it may interest you to know that researchers from Columbia University Mailman School of Public Health and Jackson Laboratory discovered differences in the gut microbiomes of people with ME/CFS compared to healthy controls. These findings add to growing evidence that connects disruptions in the gut microbiome to ME/CFS. You can read about this NIH-funded research in the following press release from February 8, 2023: https://www.nih.gov/news-events/news-releases/studies-find-microbiome-changes-may-be-signature-mecfs.
We hope this information is helpful.
Office of Neuroscience Communications and Engagement
National Institute of Neurological Disorders and Stroke
on behalf of the Trans-NIH ME/CFS Working Group