SMCI’s 2016 Accomplishments in Research

December 23, 2016

 

Research

Awarded 5 seed grants through the Ramsay Award Program for ME/CFS pilot research studies

  • Research team 1 will use advanced brain thermoimaging to define altered brain biology and low-grade inflammation 
  • Research team 2 will study B-cell metabolic and cellular alteration in the context of Rituximab
  • Research team 3 will study bioenergetics health index and mitochondrial myopathies in natural killer and immune cells
  • Research team 4 will characterize autoimmunity signatures, studying viral interaction with mitochondrial function
  • Research team 5 will explore the link between human herpesvirus 6 (HHV-6) and mitochondrial alterations

Initiated four original SMCI-Directed Research Studies addressing severe knowledge gaps

  • Pathways and biomarkers – Research in the areas of bioenergetics, metabolomics, and lipidomics using high-throughput technology and analysis of gut microbiome in partnership with industry-leader Metabalon, Cornell University, and The Levine Clinic in Manhattan
  • Immunosenescence and cell-cycle energetics – Research addressing the basic biology and root causes of ME/CFS in partnership with Dr. Sheila Stewart of Washington University in St. Louis
  • Drug screening and functional genomics studies – Research aiming to uncover potential drug screening targets in ME/CFS in partnership with leading experts at Memorial Sloan Kettering Cancer Center
  • Diagnostics and metabolic imaging – Research using advanced, non-invasive measurement of muscle metabolites in ME/CFS patients for diagnostic testing at the University of Washington through our Cathleen J. Gleeson PhD fund

Promoted the cross-pollination of ideas through think tanks 

  • Convened some of the top minds in ME/CFS clinical care and research to collaborate on the key issues facing ME/CFS at an all-day meeting of SMCI’s Research Advisory Council (attendees included Drs. A. Komaroff, J. Montoya, S. Levine, C. Bateman, S. Stewart, N. Block, P. Rowe, A. Kogelnik, M. Silvestri, and Z. Nahle, among others)

Facilitated patients’ participation in research 

  • Created a new and improved ME/CFS patient registry through an award from the Robert Wood Johnson Foundation and Genetic Alliance to improve clinical trials and study design; we will begin populating this registry with patient data in Q1 2017Created opportunities for young and underrepresented investigators through travel awards
  • Launched the MeetME Travel Awards program in coordination with the National Institutes of Health (NIH) to facilitate the attendance and participation of young talent and underrepresented groups at ME/CFS meetings and conferences

Leadership and Influence

Spoke at ME/CFS conferences and gatherings

  • Contributed insight at key ME/CFS conferences in the US and UK, including the following meetings:
  • Invest in ME conference and colloquium
  • Action for ME CMRC conference big data session
  • IACFS/ME Biennial Conference
  • Supported and spoke at both #MillionsMissing days of action (held in 25 cities worldwide) to bring attention to the disease

Engaged in meetings to further the ME/CFS patient agenda

  • Had a private meeting with NIH Director Francis Collins to discuss efforts at the NIH to strengthen research on, understanding of, interest in, and clinical studies for ME/CFS
  • Met with the Asst. Secretary of Health and Human Services (HHS), Karen DeSalvo, alongside several other ME/CFS advocates on two occasions to discuss the egregious lack of federal funding for this disease
  • Serve on the federal Chronic Fatigue Syndrome Advisory Committee (CFSAC) and contributed as a member of the Stakeholder Engagement subcommittee
  • Serve on the Centers for Disease Control and Prevention (CDC) Technical Development Workgroup (TDW)
  • Attended the NIH’s National Institute of Neurological Disorders and Stroke (NINDS) Patient Advocacy Day in Washington D.C.

Provided strategic policy advocacy leadership 

  • Authored dozens of opinion and technical pieces addressing current ME/CFS affairs across the science, research, and policy landscapes

Advocacy

Advocated for policies and federal actions 

  • Contributed to restoring CDC funding for ME/CFS research after it was zeroed out in the FY 17 budget; lobbying effort and Capitol Hill visits resulted in the funding being restored
  • Helped secure 55 members of Congress, in partnership with other advocates and Congresswomen Zoe Lofgren and Anna Eshoo, to co-sign a letter to NIH Director Francis Collins that called for additional ME/CFS research funding
  • Met with 21 congressional offices and contacted EVERY member of Congress regarding ME/CFS
  • Joined the Research!America advocacy alliance for medical research and supported the 21st Century Cures Act, appropriations finalization, and other actions in support of medical research investment
  • Advocated through professional committees at the NIH and CDC to develop educational materials
  • Supported the Federal Disability Integration Act for revised programs and regulations that support ME/CFS patients
  • Secured public commitment from congresswoman Karen Bass to assist in the formation of an ME/CFS caucus

Community Engagement

Condensed and reported information for, and built bridges between, members of the ME/CFS community 

  • Hosted a medical education webinar series where thought leaders presented updates to the ME/CFS community; speakers included ME/CFS experts like Drs. A. Komaroff, S. Levine, J. Younger, and M. Hanson as well as decision makers from the CDC and NIH such as Drs. Avi Nath and Elizabeth Unger
  • Created an ME/CFS ad that ran on a giant electronic billboard in the heart of New York’s Times Square more than 5,500 times over a three-month period to increase public awareness of the disease

Recognition

Earned recognition from organizations outside the ME/CFS community  

  • President Carol Head was named a 2017 Health Hero in O, The Oprah Magazine and spoke at both #MillionsMissing days of action to bring attention to the disease
  • The Solve ME/CFS Initiative was named a 4-Star Rated Charity by Charity Navigator, becoming the first and only ME/CFS organization to earn this coveted distinction, as well as a Guidestar Gold Participant by Guidestar.org
  • Advocacy and Engagement Manager Emily Taylor was profiled in Scripps Magazine for her work in health advocacy and raising awareness for ME/CFS