Leah Williams CFSAC Meeting June 29, 2017 aka MassCFIDS* Mission: - PowerPoint PPT Presentation

Leah Williams CFSAC Meeting June 29, 2017

aka MassCFIDS* • Mission: To improve the lives of all people affected by ME/CFS and FM, advancing awareness, care, treatment and research. • 501(c)(3) in Massachusetts. • Founded in 1985. • Active local/regional patient organization. • 9 member board, ~ 20 volunteers. • Patient services • Education and awareness • Advocacy * Chronic Fatigue & Immune Dysfunction Syndrome CFSAC Meeting June 29, 2017 2

Patient Services • Physician’s Referral Service. Approximately 150 requests/year, from MA and other states. • Disability Handbook. We provide the handbook and personal counseling and guidance. • Contact Us. Through our website, we respond to over 200 requests per year, mostly for patient services. • Support groups. We sponsor and support leaders for 3 in- person patient support groups. CFSAC Meeting June 29, 2017 3

Education and Awareness • Website. Mobile-friendly, content-rich, redesigned in 2015 (www.masscfids.org) • Newsletter. Monthly e-mail newsletter to ~ 1,600 recipients. • Events. One or two per year. Next one in November features the Open Medicine Foundation, based in Mountain View, CA. • Facebook. Frequently updated with current activities. CFSAC Meeting June 29, 2017 4

Education and Awareness • State and City Proclamations for ME Awareness Day, May 12 th . • Commonwealth of Massachusetts • Northampton, Cambridge, Pittsfield, North Adams • Media outreach. Press releases. • School nurses. School nurse conferences in MA, state-wide school nurse newsletter. • HHS Regional Office and Massachusetts Department of Public Health. Projects to promote education about ME/CFS to clinicians in Community Health Centers, including school-based health centers, in Massachusetts. CFSAC Meeting June 29, 2017 5

Education and Awareness - cont. • CFSAC. Public testimony and meetings. Two CFSAC Working Groups (IOM/P2P Report Response and Medical Education). • CDC. CDC’s Technical Development Workgroup and Stakeholder meeting (2016). • Primers. Dr. Alan Gurwitt, Chair of our Medical Advisory Committee, is co-author and member of the editorial committee for both the IACFS/ME Primer for Clinical Practitioners (2012 and 2014 Editions) and the new Pediatric Primer (2017). • Medical research. Established a patient-partner relationship with a group of new ME/CFS researchers based at a major CFSAC Meeting June 29, 2017 6 Boston medical center.

Advocacy – National and Local • Congressional visits. Visited congressional offices in Washington, DC in February 2016, February 2017, March 2017 and May 2017. • Congressional briefing. Member, Rivka Solomon, made the initial contact with Senator Ed Markey that led to his sponsorship of the congressional briefing about ME/CFS in Washington, DC, on May 18 th , 2017. 7 CFSAC Meeting June 29, 2017

Advocacy – National and Local • U.S. Action Working Group. Current chair of U.S. Action Working Group monthly meetings. • Local district visits. In May, 2017, we coordinated advocate visits to local offices in 7 of the 9 congressional districts across the state. • Millions Missing. Boston Events in May and September 2016. This led to an on-going and productive partnership with officials at the District 1 office of HHS. CFSAC Meeting June 29, 2017 8

My Story • Two children with ME/CFS • Sudden onset, age 12 • Now 21 and 18 • 5 different schools: supportive to benignly neglectful to openly hostile • 10’s of doctors: a few supportive • Optimistic: son in college, daughter finishing high school • Ph.D. in Chemistry, work for small contract research company on air pollution. CFSAC Meeting June 29, 2017 9

What We Hope to Accomplish • Personal: Voice for children with ME/CFS and their parents. • MassCFIDS: Continue to contribute to important work of CFSAC towards: • Research funding commensurate with burden of illness • Correct and helpful information at CDC and in ICD-11 • Clinical Practitioners/Educators know what ME/CFS is • Patients receive compassion/respect from medical, legal and education professionals CFSAC Meeting June 29, 2017 10