Mia Anderson was diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in December of 2014. She finished her semester exams, drove home, and collapsed at the front door.
Under the care of Dr. Jose G. Montoya, Mia slowly began to recover. By the summer of 2015, Mia felt as if she got a small piece of her former life back. “There is no cure for ME/CFS,” Mia said, “but I felt some of my brain fog started to clear and was able to sit up for short periods. My aunt bought me a beading kit, and as I started to regain some energy, I began making bracelets.”
MAKING A DIFFERENCE BEAD BY BEAD
Mia is naturally philanthropic and has always donated her time and energy to causes she feels passionate about. She decided to sell her bracelets to raise money for Dr. Montoya’s ME/CFS research and to spread awareness about this little known illness. She hoped her bracelets would spark conversations about this devastating disease.
Mia had never made jewelry before, but within a few months she had graduated from buying beads from Michaels to obtaining beads at an international bead show. She quickly learned new techniques and recruited her friends and family to help make bracelets. Mia recalls, “My mother made a rule that if someone wanted to visit they had to make a bracelet.”
In late 2015, Mia debuted an earthy, colorful collection of bracelets made with beautiful Tibetan beads. She and her mother hosted a jewelry party and by the end every bracelet had been claimed. Since then, Mia has created a Facebook page, where she displays and sells her bracelets.
CREATING A COMMUNITY ONLINE
As Mia very slowly started to recover, she started a blog, where she documented her experience with ME/CFS in a personal, unfiltered way. Friends began to reach out and explain, “I had no idea what you were experiencing and did not understand what it meant to have this disease.”
Through Dr. Montoya, Mia met another young person with ME/CFS, Brian Thompson. Like Mia, Brian has had to put his life on hold indefinitely. In December 2015, Mia profiled Brian for her blog. Soon after she published his profile, two other young people reached out to share their stories.
“It is so helpful to talk to someone who has the same symptoms,” Mia said. “We are able to support one another and it helps with the feelings of isolation.” To this end she created a Facebook page to bring young people together that are suffering with this disabling disease. “ME/CFS is an invisible illness,” Mia stressed. “People may not see it on the outside, but it takes away your life, even if it is behind closed doors.”
MOVING FROM BEDSIDE TO BENCHSIDE
In the medical world, “bedside to benchside” is a common idiom for translating medical research into treatment. Mia feels she will be well enough to accept the invitation to come to Stanford this summer. She will assist Dr. Montoya and his team with ME/CFS research.
One day, Mia hopes to be able to give back to the world, as a doctor or physician’s assistant. In the meantime, she plans to continue making a difference and raising awareness for ME/CFS, bead by bead.
Sandra and Rachel
We all want hope, and it’s hard to come by
Nearly 17 years ago, Sandra’s 10-year-old daughter, Rachel, came down with what seemed like an ordinary case of mononucleosis. But when months went by, and Rachel did not get better, Sandra knew that something was wrong. After visiting many different specialists, Rachel’s pediatrician, who had completed her residency at Stanford, diagnosed Rachel with Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome (ME/CFS).
Around the same time, Sandra also developed ME/CFS, which may be genetic in nature. One day at work, she went from feeling normal to feeling incredibly weak and faint. That marked the beginning of her and her daughter’s struggle with ME/CFS, a disease they live with to this day.
“We all want hope, and it’s hard to come by,” Sandra said, when sharing why she supports Dr. Jose Montoya’s research. Sandra first read about Dr. Montoya’s work on a patient-run blog. Reading about his research filled her with hope, and moved her to make a gift.
While Sandra and Rachel have not fully recovered, they are doing their best to live life to the fullest. By negotiating considerable accommodations for her health challenges, Rachel graduated with a Bachelor’s degree from Pomona College and completed a prestigious graduate program at the London School of Economics. She most recently launched a start-up organization that provides services for disabled adults. Her own battle with ME/CFS has given her a deep appreciation for the unique struggles disabled adults face.
By supporting Dr. Montoya’s research, Sandra is doing her part to ensure a future where ME/CFS is easily detectable and treatable. All gifts to the Stanford ME/CFS Initiative go towards researching this complex, little-understood disease, with an eye towards creating new treatments that will improve the lives of all ME/CFS patients at Stanford and beyond.
Katya Lavine was a healthy, active junior in college when she was diagnosed with mononucleosis. Though she initially seemed to recover, her symptoms returned a couple months later and she became almost entirely bedbound. She saw multiple specialists and was told that she was simply sleep deprived or anxious about final exams. Over the next year her cognitive function declined, she became highly sensitive to light and sound, and she had intense fatigue and pain. She was unable to return to school to begin her senior year.
Blood tests indicated elevated human herpesvirus-6 and Epstein-barr virus antibody titers, but she still remained without a diagnosis. When she began searching for answers online, she came upon a study by Dr. Montoya looking at antiviral treatment in patients with her same viral levels. Katya began antiviral treatment immediately. Four months later she returned to school part-time, and nearly two years later she made a full recovery.
Today, Katya works as a research assistant at the Stanford ME/CFS Initiative. She hopes to not only find a biomarker and treatment for ME/CFS, but to educate the medical community and general public about the illness and to break the stigma around it. She is thrilled to be a part of the community here at Stanford, and she enjoys getting to know patients and their families.