An open letter from Lucinda Bateman MD
As many do, I spent some time over the holiday break reflecting on the past year and making new goals for 2016.
Although 2015 started out on an emotional high with the release of the IOM report and new clinical diagnostic criteria for ME/CFS, what followed was a period of disappointment and uncertainty, largely around the new name recommendation, but also because there wasn’t a clear response from the federal agencies. Progress seemed stalled. Meanwhile, in the spring I was diagnosed with Stage 1 breast cancer, underwent surgery in June and daily radiation treatments throughout August. My mother was battling a disfiguring cancer on her face. One of the providers in my clinic left for a job with better pay, and we were also buried in the numerous administrative changes necessary to transfer finances and administrative responsibilities from a small business model to a non-profit organization, the Bateman Horne Center. Slow and steady was the key. Patience and persistence. The year ended with a BHC fundraising push—a task far outside my comfort zone. It’s not my style to ask for help. Never was rest and relaxation more needed than the end of 2015.
Things feel different in 2016. The change actually started in late October with the press release by the NIH Director, Francis Collins, who validated ME/CFS and made a commitment to support research. (Read more HERE.) I’ve had many opportunities to interface with federal agencies in the last 10 years, and this announcement is unprecedented. Wheels are turning. Progress will come.
I’ve been a tortoise alongside my patients for 20 years, modeling patience and persistence. Now, while those who are ill must of necessity maintain turtle pace, it is time for researchers and clinicians to pick up the pace as hares, only this time the hare and the tortoise will rewrite the fable’s ending. The hares will carry the tortoises toward the finish line. The race is for ME/CFS biomarkers.
So as 2016 is getting started, I’m ready to roll up my pant legs and run the race with the persistence of a tortoise and the speed and stamina of a hare. How will I prepare?
First, I vow to wear wild socks until useful biomarkers are discovered.
Why wild socks? A symbol of support for ME/CFS patients. Weird compression socks are worn by people with POTS and orthostatic intolerance. Weird wild socks are worn by people with confidence and enthusiasm.
All who dare—-wear wild socks!
Second, I will cut off my hair. I’ve cut my long hair off only twice before—first after college when I departed for 18 months in Southeast Asian refugee camps, and then after medical school graduation when I began internship and residency. It’s time again. Stay tuned…
I’m ready to chart a new course and win the race together. Join me.