Nicole Baldwin is the daughter of a person with ME/CFS. Her dedication to learning about the disease, connecting with ME/CFS experts, and contributing to the field of research demonstrate the varied and rich ways one could ‘give care’ to a loved one with this disease.
My parents did an excellent job of fostering curiosity for my sister and me. Though my dad being sick with ME/CFS affected our daily life, my parents did work hard to put it in the background, emphasize the positive, and make the most of every moment. My mom prioritized giving us rich experiences, with my dad participating too through leading us on expeditions in our woods, creating science experiments with us, participating in travels via phone and pictures, and feeding our studies with interesting scientific articles.
I do remember some moments being more aware that Dad was suffering, and in one of those moments when I was about 10 years old, I remember praying that one day I would be able to research what my dad had. Around that same time, he had finally been diagnosed with ME. All I remember understanding is that “something was wrong with his [autonomic] nervous system.” Those two moments really are the earliest I remember ever being interested in research or neurology, both of which I delved into in college.
After my dad did a presentation in North Dakota with Dr. Lucinda Bateman, he recommended that I consider reaching out to her when I was looking for summer opportunities in undergrad. She welcomed me with open arms in both 2013 and 2014. The first summer she also connected me to Drs. Alan and Kathy Light at the University of Utah, as at that time I was more interested in exploring genetic/molecular research than medicine. With those two brilliant researchers, I helped with their study on epigenetic changes after exercise in people with ME versus controls. We found that many molecular markers (such as pain, inflammatory, and metabolic markers) were markedly abnormal in people with ME compared to controls. It was such a privilege to work with them and to discuss their thoughts on the data as we were actively getting new results! I also spent time with Dr. Bateman seeing how she approached her clinic patients with ME/CFS, POTS, and fibromyalgia. Many of them for the first time felt validated, supported, and hopeful that they really could see improvement in their function and quality of life.
Through my time with her, I realized that I really did want to study medicine, as I loved delving into patients’ stories and figuring out the puzzle of their conditions. With Dr. Bateman, I also did some chart reviews, such as the effects of midodrine for POTS and upright activity as a measure of function, which I presented at the IACFS/ME conference. I also did a couple of case reports of patients who did make significant improvement, such as one man with ME after West Nile virus and a woman who developed ME-like symptoms who appeared to possibly have autoimmune central diabetes insipidus. We presented both of these at the IACFS/ME conference another year.
In medical school, I did a longitudinal program at the Minneapolis VA medical center, where I found researchers who were doing fascinating work on Gulf War Illness (now called Chronic Multisymptom Illness), and clearly had a passion to see a breakthrough for the Gulf War Veterans, as well as those returning from more recent deployments with similar symptoms. While they were focused on the research side, I was saddened to see that on the clinical side, there was not an established specialty, clinic, or approach to managing these patients that I could find, besides a few specialty centers in different parts of the country. Similar to ME/CFS, GWI/CMI did not seem to have a certain specialty that took ownership of these patients. Therefore, with the encouragement and help of the researchers, I conducted a survey of Veterans who were confirmed through their studies to fit criteria for GWI/CMI in order to find out what their experience has been in seeking treatment. Many had been to multiple specialists, tried multiple possible treatments, and reported that few clinicians felt knowledgeable about the condition nor confident in managing it. These findings were published in the Federal Practitioner.
Through this project and networking at the IACFS/ME conferences, I connected with Dr. Nancy Klimas and Dr. Irma Rey at the Institute for Neuroimmune Medicine at Nova Southeastern in Florida. I arranged to spend a one-month away rotation with them as a medical student, seeing how they manage patients with a stronger focus on the immunology aspects. I also learned about the excellent, comprehensive research they were doing on ME/CFS and GWI/CMI.
Since then, I graduated medical school and am now in neurology residency. I chose neurology because it had the same aspects that I learned I enjoyed while working with patients with ME/CFS (the need to know patients’ stories, complex puzzles, long term relationships with patients, life-changing illnesses, etc.). At this point I am still weighing post-grad options, but have an interest in neuroimmunology.