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

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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.

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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.

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Education and Awareness

• State and City Proclamations

for ME Awareness Day, May 12th.

• 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.

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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

Boston medical center.

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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 18th, 2017.

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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.

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My Story

• Two children with ME/CFS
• Sudden onset, age 12
• Now 21 and 18
• 5 different schools: supportive to benignly neglectful to
• penly 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.

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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

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