ME/CFS Thought Leaders Come Together for SMCI Research Advisory Council Meeting

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RAC meeting participants, pictured left to right: SMCI President Carol Head; Michel Silvestri, PhD, Sweden; Dr. Vicky Whittemore, NIH; Sheila Stewart, PhD, WashU; Natalie Block, MD, MPA, Mount Auburn; Anthony Komaroff, MD, Harvard; SMCI Vice President for Research and Scientific Programs Zaher Nahle, PhD, MPA; Jose Montoya, MD, Stanford; Cindy Bateman, MD, Bateman Horne Center; Sue Levine, MD, CFSAC; Peter Rowe, MD, Johns Hopkins Medical Center; Andy Kogelnik, MD, PhD, Open Medicine Institute (not pictured

On Saturday, October 8, 2016, the Solve ME/CFS Initiative brought together some of the top minds in ME/CFS clinical care and research to collaborate on the key issues facing ME/CFS today. Dr. Vicky Whittemore of the National Institutes of Health (NIH) also joined our discussion.

The program began with a morning closed session led by Dr. Zaher Nahle, where a number of internal SMCI research and scientific programs were evaluated and discussed.

The afternoon session was kicked off by Dr. Vicky Whittemore, outlining her experience within the NIH and her efforts to build internal support for ME/CFS. As she manages the ME/CFS portfolio and the Trans-NIH Working Group on ME/CFS, Dr. Whittemore drew on her five years of experience with epilepsy research. With two requests for applications (RFAs) on the way, Dr. Whittemore also addressed efforts to target and prioritize issues faced by the ME/CFS community, such as developing a common data elements project and adding telemedicine in order to reach house- and bedbound patients. Dr. Whittemore specifically pointed to the successful advocacy of the patient community, like the 55 congressional signers on the letter to NIH Director Collins and the ME/CFS stories featured in key Capitol Hill publications, in providing her with key tools to help with her efforts to get the NIH to take action. Dr. Whittemore also praised the type and nature of coordination that SMCI has developed with the NIH to serve the community. SMCI is pleased that Dr. Whittemore is so deeply committed and knowledgeable, as she works to strengthen NIH’s commitment to ME/CFS.

Dr. Anthony Komaroff of Harvard Medical School then gave his vision and updates on the field. He began by describing the very first ME/CFS patient he ever encountered. “That thing that makes you feel sick won’t turn off,” he recalled the patient saying. Dr. Komaroff continues to think that this simplified statement is not too far from the truth. In an in-depth discussion of the leaky gut, avgas nerve, and blood brain barrier, Dr. Komaroff explored the brain’s immune responses and how cell exhaustion and chronic inflammation can be triggered. Dr. Komaroff emphasized the promise of investigations addressing sickness response and gut microbiome. He also expressed his desire for the scientific field to collaborate with others who have multi-disciplinary expertise, calling for centers of excellence, a joint conference, and a collaborative network working toward distinguishing and subtyping patterns of ME/CFS.

Dr. Jose Montoya of Stanford University followed with his own remarks, elaborating on the challenges of recruiting the next generation of researchers and clinicians in the field by using personal accounts of medical students and fellows displaying uncertainly toward ME/CFS projects. Dr. Montoya’s approach is to combat reluctance on the part of the new generation with data and facts about the disease. He finished up by describing many projects at Stanford and elsewhere, including, among other things, findings on leptin, cytokine studies, and the links between transforming growth factor beta and white matter in ME/CFS.

Dr. Andy Kogelnik then teleconferenced in to give his remarks and elaborate on his work and experience with Rituxan. Dr. Kogelnik is working with multiple subgroups and noted that some have seen substantial recovery—even going from bedbound to functional. But he cautioned that there is no indication these results are long term, and more testing will be needed. Dr. Kogelnik warned of an upcoming clinical care crisis with the looming retirement of the few practicing clinicians still in the field and warned that the NIH is not moving far enough fast enough. The NIH’s real challenge, he noted, was its structure, which is set up to only evaluate one mechanism at a time; ME/CFS does not fit into that framework. To overcome this challenge, Dr. Kogelnik recommended identifying pathways of research that are of interest to the institutes and will accommodate the rigid agency structure.

Dr. Sue Levine, founder of The Levine Clinic in Manhattan and chair of the U.S. Department of Health and Human Services Chronic Fatigue Syndrome Advisory Committee (known as CFSAC) also gave remarks on the state of care for ME/CFS patients. Dr. Levine described her efforts in medical education and encouraged the field to work in a multi-disciplinary fashion, emphasizing centers of excellence as a vital tool going forward. She proposed that the NIH and SMCI create a fellowship for mid-career physicians to encourage new specialists in the field and cited the IOM report as an example of the field coming together for more collaboration. Dr. Levine ended on a hopeful note, describing progress such as Kaiser sending physicians to ME/CFS clinics to improve their understanding of the disease and a new clinic scheduled to open in Cleveland, OH, in April 2017.

Dr. Peter Rowe of Johns Hopkins Medical Center described his vision for the field and reported on his recent findings, including work on orthostatic intolerance and milk in adolescent ME/CFS patients. Dr. Rowe noted that testing orthostatic intolerance is key to the illness and emphasized that his findings demonstrated statistically significant improvement for all patient subgroups when ceasing milk product intake. Dr. Rowe elaborated on the autoimmune, leaky gut, and blood-brain barrier points from previous discussions, noting that the hypermobility of Ehlers-Danlos syndrome (EDS) may have potential connections.

Dr. Cindy Bateman, the founder and medical director of the Bateman Horne Clinic in Utah gave a presentation as well, describing her experience and challenges in caring for patients with ME/CFS. She elaborated on the financial struggles that specialists face as well as difficulties with insurance coverage, consults, and uninformed primary care physicians. Dr. Bateman detailed how frustrating the clinical setting can be for patients with such difficulty gaining access. She also discussed the use of technology to consult with patients outside of office visits and how the use of physician assistants and nurse practitioners can help cut costs.

Throughout the session, productive exchanges and discussions took place between presenters and RAC members, including Drs. Stewart and Silvestri as well as members of the SMCI board of directors who were in attendance. As all SMCI board members are patients or family members of patients, their interest is intense and personal.

The Research Advisory Council expressed its enthusiasm for the direction of SMCI’s research plans, and the day concluded with several plans for collaboration between clinicians, researchers, and patients under the guidance of SMCI.

October 14, 2016
  • Becki Villecco-McDonough

    Sending gratitude to all of you that continue to advocate, research, and put forth dedicated effort into helping patients to be believed and to be treated. As a nurse, and recently diagnosed mother of two sons with this incredibly life-destroying illness, I sincerely commend your continued push for the medical community to become educated to enable them to treat patients.

    I can not emphasize enough the great need for awareness and support for both the sufferers as well as their families. To this very day, we are forced to live in communities among providers that are completely ignorant of this profoundly disabling disease. Both the medical community and the educational community not only flatly deny the existence of this illness but set out to cause undue harm to anyone, child or adult that becomes incapacitated by it.

    My sons and I have now lost years, forced into homeschooling and living without support. My husband left and has been allowed to completely dismiss his responsibility. Despite letters from medical experts in the field that are educated in the actual illness, requests for him to provide financial support are denied. The attorney has gotten away with stating that this illness is not real. In two weeks, we could be homeless because I am unable to work to support both sons. One developed a pituitary prolactinoma after EBV and CMV along with reactivation. The other suffered both EBV and CMV as well and reactivations. Both have ME/CFS and have had immense issues related to the POTS and subsequent other issues that have literally destroyed their lives. The illness is relentless enough to keep surviving through, but the cruelty of others is beyond description.

    I am looking for a provider currently to assist in working with our ME/CFS provider or any doctor that will help ASAP. I desperately need my health back and to have a strong advocate to stand up to a very flawed system.

    Giving up is not an option as I face having to provide financial and educational support for my sons alone.

    My husband resides in wealth and has the only access to money. We are given $230 a week only. 3 people and 3 pets can not live on that. Despite working for over 32 years, and building a business, we are about to be left in poverty because of illness.

    Recovery is our only goal. Then, I will be seeking to continue to educate and to advocate for all that have and do suffer from this relentless disease.

    Sending positive thoughts and thanks for the hard work!

    Blessings,
    Just another Mom in Binghamton, N.Y.

    **Keeping HOPE!**