The second in a series of profiles of the new members of the CFS Advisory Committee.
Four new members were recently appointed to the CFS Advisory Committee. In previous years, members such as Drs. Jason, Klimas and Snell were well-known to the advocate community. More recent appointees have been new to the community (although not necessarily new to CFS). I thought it might help foster productive dialogue to become acquainted with the new members, and Dr. Lisa Corbin was kind enough to speak with me on July 3rd.
Dr. Corbin is the medical director of the Integrative Medicine practice at the University of Colorado Hospital in Denver. Approximately 85% of patients at the clinic have fibromyalgia or other chronic pain conditions, and 5-10% of the patients have CFS. Dr. Corbin acts as a consultant, not a primary care physician, for her patients. After evaluation, diagnosis, and conventional care options have been addressed, the clinic provides a variety of alternative medicine treatments. She described her approach as helping patients avoid harmful alternative treatments, and using safe and plausible treatments with care for time and money. She said she doesn’t care if the treatment has a placebo effect if it’s helpful, and that patients can’t wait for exhaustive studies to be done before trying a potentially helpful option.
In diagnosing CFS, Dr. Corbin relies on the Fukuda definition and careful exclusion of every possible contributing cause. She noted the striking difference between patients with acute infectious onset and those with unexplained chronic fatigue, and how challenging it is to help patients who do not meet the strict Fukuda criteria. Dr. Corbin does not do research on CFS, but is very excited about objective evidence linked to the illness. She said that most doctors “don’t get it,” and believe it is psychological or motivated by secondary gain. But in Dr. Corbin’s opinion, all these doctors need to do is “just sit and listen” to patients and it quickly becomes clear that CFS is a serious illness and not psychological.
Dr. Corbin said that the public comment from patients was the high point of the CFSAC meeting last month. She said that serving on the committee is a “huge honor,” both because of her fellow members and because of the opportunity to hear from patients. She hopes that she will be able to enrich her own practice with the information she learns through her service on the committee. Dr. Corbin believes that the committee cannot ignore patient expertise because although committee members are passionate about CFS, they cannot devote 100% of their daily effort to CFS issues. She values patients that are engaged and interested, and is eager to learn from them. In her own practice, Dr. Corbin loves when patients bring material they have found online or through their own research.
I asked Dr. Corbin about her vote on the CDC’s Toolkit for health professionals. The committee passed a motion recommending that CDC remove the Toolkit from its website, and Dr. Corbin voted against that recommendation. Dr. Corbin acknowledged that there was definitely room for improvement in the Toolkit and that some of the information was misleading. She heard and understands the patients’ concerns about the emphasis on CBT and graded exercise. She told me that she knew her vote would be controversial, but she had two reasons for voting against the recommendation. First, she believes that ~80% of the information in the Tookit is good and that it is better to have something available rather than a vacuum of no information. Second, Dr. Corbin said that the Tookit signals to doctors that CFS is a serious illness, and she was concerned that removing the Toolkit could be seen as a sign that CDC was changing its position that CFS was a real illness.
Dr. Corbin said her strengths are education and patient care, and she hopes to bring that perspective to her work on the CFSAC. She said she wants to raise awareness of CFS both within DHHS and with the public. She said that CFS is a “real, very disabling illness.” Even though patients look ok and blood tests are normal, this does not mean that they are not sick. Dr. Corbin believes that broader acceptance of the seriousness of CFS will help the push for more research funding, and that research findings must then be disseminated to the average clinician and primary care providers.
In my experience, it is rare to find a physician who is eager to learn from her patients. Dr. Corbin struck me as enthusiastic about the opportunity to do so. Having another physician on the committee (in addition to Dr. Susan Levine) who is actively providing care to CFS patients and also interested in educating other doctors can be an asset to the CFSAC’s work. Given the large scale neglect of ME/CFS by federal research organizations, the meaningful expertise acquired by patients and their families can be of great value to the CFSAC. Having CFSAC members who truly want to listen to us will be a very good thing.