In January 2016, I cut my hair and started wearing wild socks, vowing to do so until we had a biomarker. It must have worked [!] because in 2017 BHC was included in two of the three National Institutes of Health (NIH)-funded ME/CFS Collaborative Centers grants (Jackson Labs and Columbia’s Center for Solutions) with lofty goals to study pathogens, changes in the immune system, the microbiome, and metabolism. BHC screened, enrolled hundreds of research subjects, and sent biological specimens to the best scientists in the world. We also carried out an important study validating the use of the NASA Lean Test (biomarker!) to study cognitive changes (biomarker!) compared to healthy subjects. We have previously written about many of the publications that came from these efforts. While participating in this 5-year research grant, we hosted the ME/CFS Clinician Coalition meetings in 2018, 2019 and 2020, which led to a landmark widely accessed publication in the Mayo Clinic Proceedings on diagnosis and management of ME/CFS.
I believe these efforts [among many others] laid the groundwork for ME/CFS to become the foundation for understanding Long COVID. It has also opened the door for me to represent all of you at a national level, by participating in the RECOVER COVID Initiative (both biomarker and treatment trials) as a voice for ME/CFS.
Many are not aware that forward process continues within the National Institute of Neurologic Diseases and Stroke (NINDS) to advance scientific research on ME/CFS at the NIH. In 2018, I was on a Working Group charged with advising the National Advisory Neurological Disorders and Stroke Council (NANDSC) on how to best advance research on ME/CFS at the NIH. You can read the report here.
Now in 2023, with the worst chaos of the COVID pandemic behind us, additional steps will be taken to outline the future of ME/CFS research within the NIH.
Why am I telling you all of this? Because the work of BHC, and specifically your contributions to sustain BHC, have placed me in a position of trust from which I can be your advocate, speaking on behalf of people with ME/CFS and related conditions at the highest level as a clinical expert. When not supported by a specific research grant, my advocacy work above is almost completely supported by your donations. In addition, your donations support me when preparing educational materials, giving lectures, writing and editing research papers, and spending extra time with patients.
Thank you for your trust and support. I feel confident there will be substantial progress on all fronts in the next 1-2 years.
Happy New Year!
Lucinda Bateman, MD, Founder and Medical Director
Dr. Bateman’s Wild Socks