At a time when the world is reeling from conflict, anger and disillusion, we may be hesitant to trust the light on our COVID-19 horizon, but I’d like to share hopeful news. For COVID long haulers: there is an ever-growing scientific and medical response to your situation. For everyone else who has long been invisible and abandoned with ME/CFS (plus other post-viral and related conditions): there is an ever-growing awareness in our society that you exist and matter. With a persistent and unified message, we can translate that into scientific and medical progress for all of the forgotten.
It has been my life’s work to raise awareness of ME/CFS. In 2000, I typed out “raise awareness of CFS and FM” in large font on a piece of paper and placed it under the glass of my desktop. Without a doubt, there was consistent slow progress over time, but now it has become exponential growth.
Journalists have been interviewing Dr. Yellman and me regarding Long COVID and its relevance to ME/CFS. Recent news stories have appeared in USA Today, National Geographic, Yahoo News, Vox, and North Jersey News. Journalists are asking more informed questions and articulating these long overlooked and understudied areas of science and medicine. We must all keep the conversations going in every arena. I admire and thank the patients who have shown the courage to speak out.
I continue as a faculty resource for the CDC-funded ECHO telemedicine project called “Long COVID and Fatiguing Illness Recovery Program.” The agenda strategically combines lectures on ME/CFS with Long COVID and related conditions for medical providers. The 2-year program provides weekly medical education sessions to a group of designated primary care providers in California, and also an open and nationally available ECHO webinar each month. The quality of these educational programs is very high, drawing from clinical experts around the country, and the content will be available as recorded sessions for other health professionals. It is certainly a different experience for me to be engaged in high level medical discussions with experts who now completely embrace and appreciate the significance of ME/CFS and its relationship to what we are seeing in COVID Long Haulers. This is progress that can’t be reversed.
The NIH-funded ME/CFS Collaborative Centers 5-year grant period ends soon. Centers are submitting their research for publication. The NIH has opened the grant application process for the next cycle. Could it be better funded? Yes. But I want to remind everyone there are many ways to push for progress. This includes educating medical providers, engaging the media, and making a constant effort to inform our politicians who fund the NIH. We will continue to use every resource and lesson from Long COVID to benefit all with the underserved chronic illness conditions that fall within the mission of BHC.
Before I close, I must say how proud I am of our BHC team that produced the “ME/CFS Crash Survival Guidebook.” Since the online introduction of the guidebook on February 3rd, there have been more than 18,000 webpage views and thousands reached on Twitter and Facebook. Feedback to BHC, especially from the severely ill, has warmed our hearts. Please share widely with anyone who may benefit.
Thank you for your trust and support.