It was wonderful to host eight representatives from the Massachusetts CFIDS/ME & FM Association (Mass CFIDS) at JAX on November 17, 2017. Mass CFIDS is an advocacy organization dedicated to meeting the needs of patients with ME/CFS and their families. The group provided valuable insight and suggestions to members of the Collaborative Research Center (CRC).
President of Mass CFIDS, Charmian Proskauer, was in attendance with her husband Alan Gurwitt, a retired child psychiatrist and ME/CFS patient. They were joined by Elizabeth Potter, Acting Vice President of Mass CFIDS and ME/CFS patient, as well as several patients and advocates to represent families of local patients suffering from this debilitating illness.
JAX ME/CFS CRC director Dr. Derya Unutmaz, Associate Director Dr. Julia Oh, and Clinical Project Lead Dr. Peter Robinson each gave brief presentations on the team, organization and research focus of the program. The group was excited about the potential of the JAX CRC making a difference for the patients suffering from this disease. The group also discussed the general dismissal of ME/CFS as a serious disease, the major challenges involved in educating the medical community about ME/CFS, and potential ways to cope with this chronic condition. Dr. Unutmaz was hopeful that the studies initiated by the NIH CRC will be used to influence the medical community by providing them with groundbreaking research from credible scientific sources. Suggestions were also given on how to reach patients suffering from ME/CFS in the community in order to give them hope that an answer is on the horizon.
In November 2018, Mass CFIDS will have their Annual Meeting where JAX scientists will speak about the project, and the video from the meeting will be posted on Youtube in the hopes that it can reach an even larger audience. JAX CRC is excited to continue to partner with Mass CFIDS to give ME/CFS patients a voice, and to provide hope to those suffering from this poorly understood and devastating disease.