On January 24, 2014 Llewellyn King held a National Press Club conference in Washington, D.C. Speakers included Dr. Andreas Kogelnik, of the Open Medicine Institute, and Ryan Prior, who is making a documentary about the illness, The Blue Ribbon: ME/CFS and the Future of Medicine.
Llewellyn King, whose political commentaries can be found on the White House Chronicle, hosts interviews with prominent figures in the ME/CFS community through his YouTube video series, the ME/CFS Alert. He is a veteran journalist, and he has applied his years of experience to help disseminate information about ME/CFS.
In his brief introduction, Llewellyn King presented an overview of the disease. He stressed the seriousness of the illness and how little attention had been paid to it by media and by the government. “What is needed,” said Mr. King, “is to comfort the patients, educate the doctors, and, because of its lack of funding, shame the government.”
Dr. Andreas Kogelnik was the first speaker. He explained that his initial involvement with ME/CFS stemmed from his experience as a clinician, in which he saw several patients with the illness, but had no way to treat them. His clinic discouraged treatment of CFS because it wasn’t a “real disease,” but this was not enough to discourage him. Over the course of seven years, his knowledge of the illness grew, as did his experience treating it.
Dr. Kogelnik described how the current practice of medicine cannot deal with complex multi-system illnesses, such as ME/CFS. (Throughout the talk, Dr. Kogelnik referred to the illness as “chronic fatigue.”) “The breadth of the disease is tremendous,” he said. “But the understanding of physicians is appalling.”
For the journalists present, he had three take home messages:
- We need a tremendous re-engagement and re-education of physicians
- We need more funding for research
- We need a lot more support for patients
The second speaker was Ryan Prior, who contracted acute onset ME/CFS as a high school student. Ryan echoed Dr. Kogelnik’s sentiment that “ME/CFS is the poster child for the kind of research we finally have the technology to sort through.” His plans for his film, The Blue Ribbon, include using it to attract medical students, and train them as interns. “Patients have to wait two or three years,” he explained,” to see a specialist.” If more doctors can be educated about the disease, while they are still medical students, then Ryan hopes this will take some of the burden off ME/CFS specialists, and help invigorate the field.
The remaining time was spent answering questions. Dr. Kogelnik specifically addressed how patients are diagnosed and treated. He also raised a very important point, which is that data about how the illness presents, the course it takes, and which treatments are effective already exists, but physicians are not keeping track.