For our next spotlight series, I talked to Sadie Whittaker, Ph.D., the new Chief Scientific Officer (CSO) at Solve ME/CFS Initiative (SMCI). Sadie has previous experience in Biotech and Pharma, in clinical development for biologic medicines, and in strategic leadership roles for advocacy, policy, communication, and external engagement. We talked about her path through industry and into patient advocacy, her opinion on where current ME/CFS research is going, and how collaboration is the key to moving the field forward. Keep reading to learn more!
In honor of “Severe [ME/CFS] Awareness Day” on August 8th, an article was published on CNN’s website by Ryan Prior, a cross-platform associate producer at CNN and ME/CFS patient. In the article, titled “Millions suffer from an invisible disease: My ME/CFS story,” Prior details how he was diagnosed with the disease at age 16, when he was a motivated high school student busy moving towards his dream of attending college and writing Pulitzer Prize-winning stories. After becoming too ill to attend school and continuing his studies from home, Prior struggled for six months to find a diagnosis. He notes how difficult it can be to find a diagnosis and treatment for ME/CFS, saying that there are only a few dozen specialists in the United States, and often, they are far away and don’t take patients’ insurance.
In the 11 years since he was diagnosed, Prior has become a journalist and has used his expertise to advocate for ME/CFS, producing the documentary Forgotten Plague, and becoming Co-Director for the Blue Ribbon Foundation. In the CNN article, Prior says that, “despite the hardships, there are beacons of hope, with world-class scientists searching for bio-markers and new treatments.”
In our latest “People in ME/CFS Research” spotlight, I was fortunate to chat over the phone with Carol Isaacson Barash and interview her about her extensive background in genetics ethics and scientific consulting. Carol has her own consulting company, Helix Health Advisors, and is also an ME/CFS patient and has been applying her knowledge of science and ethics to the management of her illness. Read on to learn more about her scientific background, her experiences with getting a diagnosis and treatment, and her opinion of the ME/CFS field.