The first 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. Adrian Casillas was kind enough to speak with me on June 21st.
Dr. Adrian Casillas a clinical immunologist and Associate Professor at Louisiana State University Health Sciences Center in Shreveport, Louisiana. Dr. Casillas was trained at UCLA, and moved to LSU in 2007. He was appointed to the CFS Advisory Committee on June 13, 2012.
Dr. Casillas told me that he was nominated to the Committee by Dr. Gailen Marshall (current chairman) for his experience in immunology and biomarker discovery. He is also experienced in cluster analysis, which he believes is important in an illness like CFS that has such disparate features. Although Dr. Casillas has not published research on CFS, he has worked on biomarker development, specifically the measurement of virus expression as a marker for immune dysfunction. When the immune system is suppressed (as in organ transplant recipients) common viruses that almost everyone carries, such as the BK virus, may begin replicating and are shed in urine. Dr. Casillas believes this may be a potential marker for immune dysfunction in CFS patients, and told me he is forming a collaboration with two other members of the CFSAC to investigate.
The presentations at the CFSAC meeting were very educational for Dr. Casillas, and he sees a lot of potential to improve classification and treatment of CFS. Dr. Casillas told me that the meeting caused him to think back on the patients he has treated who may have had CFS that he did not recognize at the time. He believes that a multi-specialty clinic, in person or telemedicine, is the best way to diagnose and manage CFS patients. Dr. Casillas noted that CFS has no specialty home, and that a multi-disciplinary approach is necessary.
I asked Dr. Casillas what value he brings to the CFSAC table. He said that he brings new perspective and different insight into the scientific work. Dr. Casillas stressed that there should always be an immunologist on the committee, since CFS clearly involves immune system disturbance. Dr. Casillas also sees potential for building a consortium approach to CFS care and research. He said that there should be at least one CFS specialist in every state, but that a centralized consortium could build a queue of patients that receive multidisciplinary care and also generate data for gene expression and other studies. He told me that access to the CFSAC’s work could counteract doctors’ disbelief in the illness.
Dr. Casillas said he believes that the committee has and should maintain a diverse membership, bringing in new people to the discussion. He said that the social aspects of the illness are quite important, but admitted that this is not his forte. When I asked about what materials members received in advance of the meeting, he confirmed that he did not receive the materials binder or other preparation in advance. Dr. Casillas said that more information about his fellow members and an issues summary would have been very helpful to him.
CFS advocates know that new ideas, biomarker discovery, interdisciplinary approaches, and positive action are needed in this field. One challenge facing the CFSAC is how to integrate new people into its work, bringing them up to speed on essential science and history without losing time and opportunities. It’s my hope that Dr. Casillas and the other new members of the CFSAC can bring fresh perspective so that the committee can make knowledgeable and effective recommendations to advise Secretary Sibelius on the best ways to meet the challenges of CFS.
I spoke to him also. Many were concerned about the new members. I am not. Although I know they will have to be educated, I trust they have an interest and are willing to learn. This doctor also told me at the meeting that after Rowe’s presentation, he was tempted to call some of his former patients to suggest some treatments that he learned about.
As you say, Jennifer, time is lost as the new folks get caught up. But, we also broaden those who are knowledgeable of not just the disease, but the politics and government policies and challenges.
I am very glad Dr. Casillas is on the committee and I expect he will contribute quickly. I’m sure he went home and did lots of research in the literature after the meeting. Look for him to be a force for good on the committee.
Perhaps there is a silver lining to the failure to prepare. We could send new members a packet to read with accurate information instead of CDC spin and fake science that they would get from HHS.