Derya and I were happy to meet with six local Connecticut representatives from the Fibromyalgia and Chronic Fatigue Syndrome Informational & Support Group on February 26, 2018. The group visited JAX so that they could learn more about the ME/CFS project and to tour the lab. They are a local group based in Litchfield, CT, and meet twice a month to provide information, support, and a sense of community to local patients who are suffering from Fibromyalgia and ME/CFS. They gave us valuable insight about the disease, plus some suggestions on how we can improve our community outreach efforts here at JAX.
Barbara Stillman, who is a patient and advocate and worked as a therapist before retiring, helped set up the visit and led the group. Pat McKenney, a parent of an ME/CFS patient, visited JAX for the second time, as she and her husband had visited with Mass CFIDS in November, 2017. Kathy Kushwara, Cathy Jecture, and Diane Ryan, all ME/CFS or Fibromyalgia patients, talked about similarities between disease triggers and symptoms during the visit, and local advocate Tim Hill also visited with the group.
I talked with the group about the JAX team and the research focus of the program. Derya explained some more details about the project, discussed their conditions and the goals of the CRC, and learned about their disease history and experiences. The patients talked about how disease triggers could stem from childhood illness or stress, and how doctors should take a detailed patient history so that they can get to a diagnosis sooner. They also said that it can be very difficult to explain the disease to friends and family, and Barbara quoted the Spoon Theory, a great analogy for describing the low energy levels in ME/CFS. She said that “maybe you start the day with only 10 teaspoons of energy, but then you use up 4 of them just eating breakfast!”
Everyone agreed that keeping communication strong in the community is very important, and can help the field of ME/CFS reach a tipping point that leads to disease recognition and more funding. We are grateful to this wonderful community for offering valuable suggestions and feedback, and for their tremendous effort in advocating for this disease and giving us motivation to push forward with this important research.