Day Two: Research & Clinical Conference (March 13, 2009)

Today (Friday) was the first of three days of the research/clinical conference. The goal of the sessions conducted today through Sunday is to present the latest data on research being conducted in CFS. About 180 people registered for the meeting and for most of the day, the large ballroom was full. Many patients stayed over from yesterday’s patient conference, determined to push through exhaustion and brain fog to hear the latest data from the researchers themselves. Some stayed just to soak in a sense of progress and camaraderie.

In addition to research groups from across the U.S., today research was presented from investigators in Barcelona, Spain; London, England, Recife, Brazil; Sydney Australia; Oslo, Norway; Bergen, Norway; Osaka, Japan; Auckland, New Zealand; and Brussels, Belgium. CFS is truly a worldwide public health concern.

The morning session began with an elegant overview from Dr. Yasuyoshi Watanabe of his team’s research in Japan. The presentations that followed, on the broad topic of pharmacologic and non-pharmacologic treatment advances, generally agreed that cognitive behavioral therapy was not a cure-all, but could provide some relief if the patient and practitioner had similar goals and expectations. There was some initially promising data offered on isoprinosine, although it’s not available in the U.S., but can be ordered from Canada or Europe with a prescription. EMDR performed by a licensed practitioner also provided some benefit. Xyrem (sodium oxibate) was shown in one trial to be effective in reducing alpha-wave intrusion during sleep and restoring restful sleep.

Epidemiology studies followed the lunch break. Infections with Q-fever (coxiella burnetti), giardia and parvovirus B19 were shown to lead to persistent CFS-like symptoms in a subset of patients. Repetitive stress injury was shown to correlate with CFS symptoms in a group of bank workers in Brazil. Death rates among CFS patients were the same as the rest of the patients in one doctor’s New Zealand medical practice – good news, I suppose.

In the short session on neuroendocrine advances, two investigators funded by the CFIDS Association presented data. Dr. Alan Light’s presentation on a set of adrenegeric and sensory receptors following mild exercise brought a collective “Ahhhhh” from the room when he showed charts clearly distinguishing CFS from matched healthy controls and MS patients. Dr. Klimas’s group at University of Miami showed some data that neuropeptide Y correlates with symptom severity.

The program ended today with an address from John Kitzhaber, M.D., the former governor of Oregon. Dr. Kitzhaber presented his ideas for a transformational overhaul of the entire health care system, incorporating humor and a heavy dose of reality into his talk. His ideas and his delivery were met with a standing ovation from attendees.

This evening Suzanne and I were invited guests to attend a reception at the Nevada Museum of Art hosted by Annette and Harvey Whittemore in support of the IACFS/ME. We enjoyed having time to converse with researchers and advocates alike, although neither of us took the opportunity to see the museum exhibits that were open to guests. Several administration and faculty of the University of Nevada-Reno and the Whittemore Peterson Institute were there in support of expanding CFS research.

After the reception, Suzanne had some research-related conversations while I took time to visit with several of the people who worked on the local patient task force to make the conference a success. I enjoyed renewing old friendships and meeting new people, all part of this vibrant, courageous and persistent community.

Suzanne has made a 7 a.m. meeting for us and the program starts at 8 a.m., so I will close here. More news to follow from the Saturday session!

Kim McCleary

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