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.
One thought on “Site Visit by Connecticut Patients and Advocates to Jackson Laboratory”
Thank you so much for the update and for the wonderful work you are doing. The ME/CFS patient community is eagerly awaiting news of progress, both in terms of clear identification of bio-markers and of course treatments. I agree with one of the visitors in that detailed patient histories are a must. One of the fundamental problems, beyond of course the lack of clarity around the case definition and diagnostic criteria, particularly here in Europe (maybe not so much now in the US post IOM 2015 report), is simply that physicians are very poorly trained in recognizing the disease. Physicians will often and promptly label patients as depressed or attention seekers, when they come to their clinics with un-remitting fatigue and inexplicable sore throats. The whole system of training young doctors needs a serious overhall. And the best way to get that expedited is through good, serious research like the one you are doing at the lab. Thank you, truly, thanks.
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