Successful people frequently say the key to success is showing up every day and putting in the work. After that it takes determination and patience, along with good timing, a little luck, and lots of help from others to meet lofty goals.
At BHC, we embrace that philosophy in our dogged pursuit of equality of clinical care for our stakeholders [you]. We are small but mighty, and never stop looking for ways to make progress in creative ways.
Foundation for Provider Education
In our big push to transform medical provider education we are now seeing exponential progress. Building on the foundation provided by the IOM/NAM report in 2015, revised educational materials by federal agencies, and important revisions of UpToDate, progress has been accelerated with the publication of ME/CFS: Essentials of Diagnosis and Management in the reputable journal, Mayo Clinic Proceedings. Authored by the US ME/CFS Clinician Coalition this how-to article has been downloaded 95,000 times since publication nine months ago and is currently the #1 most downloaded article of Mayo Clinic Proceedings!
Provider Education Progress
In March I wrote about the CDC-funded ECHO telemedicine provider education project called “Long COVID and Fatiguing Illness Recovery Program” that will continue for two years. The agenda strategically combines lectures on ME/CFS with Long COVID and related conditions for medical providers.
In April the national medical provider audience (and interested public) heard a great presentation on Autonomic Manifestations of Long COVID from Jeffrey Hsu MD, PhD, a UCLA cardiologist (totally applicable to ME/CFS orthostatic intolerance), and I presented the May lecture on ME/CFS.
In June, medical providers will hear from a very articulate and informed ME/CFS patient, Sonak Pastakia, PharmD, MPH, BCPS, about his experience as someone with ME/CFS. These lectures will be recorded, immortalized and promoted by the CDC and Project ECHO to improve education of medical providers far and wide.
Progress with provider education is not just about better clinical care. Educated providers identify and diagnose more patients, so more people with ME/CFS, FM, post-viral and related conditions can be recruited as subjects for treatment trials. The speed of treatment trials depends critically on rapid recruitment and enrollment of willing subjects.
Despite the low rate of diagnosis, for decades far more people (patients), compared to their doctors, recognize their own diagnoses, and have become experienced and knowledgeable about the illness. So now is the time for inclusion of these informed patients in decision-making about research and clinical trials, especially in the fast-moving Long COVID arena. We are proud of the NIH-funded CAC (Community Advisory Committee) which has produced important Guidance on Study Feasibility and ME/CFS Research Priorities and will continue to support broad dissemination of their work, as funding for this patient voice appears to be uncertain with the ending of this current grant cycle of the ME/CFS Collaborative Centers.
My hope and determination remains strong as we continue to embark on this new and swiftly transforming landscape of medical education and research together.
Lucinda Bateman, MD, Founder and Medical Director
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