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June Update
CFSAC Meeting
Ben HsuBorger, #MEAction June 20-21, 2018
June Update CFSAC Meeting Ben HsuBorger, #MEAction June 20-21, - - PowerPoint PPT Presentation
June Update CFSAC Meeting Ben HsuBorger, #MEAction June 20-21, - - PowerPoint PPT Presentation
June Update CFSAC Meeting Ben HsuBorger, #MEAction June 20-21, 2018 GROW 2 Growing Team 1. Time for Unrest campaign joins #MEAction 2. In February added Managing Director (Laurie Jones) and Communications Director (Kim Flores) 3. In June
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Growing Team
- 1. Time for Unrest campaign joins #MEAction
- 2. In February added Managing Director (Laurie Jones)
and Communications Director (Kim Flores)
- 3. In June added Medical & Scientific Outreach Director
(Jaime Seltzer)
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Growing Scope of Work
- 1. REACH public and press about ME
- 2. CONNECT the community
- 3. ADVOCATE through patient and ally mobilization
- 4. EDUCATE doctors, nurses & health professionals
- 5. INSPIRE new generation of researchers
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CONNECT
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CONNECT
- Living with ME Support Group has added
1,500 new members in past 6 months.
- New support group started for caregivers, with
monthly support calls facilitated by volunteers.
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CONNECT
We have groups for patient support, caregiver support, advocacy groups, social/affinity groups and groups organized by location -- over 100 in total.
www.meaction.net/groups
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CONNECT
- Dr. Lenny Jason survey on PEM
- Advising researchers on making patient
engagement an integral part of research
- CFSAC Application for New Voting Members
Announcement
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ADVOCATE
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ADVOCATE
New York statewide advocacy:
- Unrest screenings w/ health officials and public university
- Educate medical providers about ME
- NY State DOH launches new webpage about ME
- Outreach to New York LGBTQ community about ME
- Public testimony at NYC Council Health Committee
- Elected officials and government leadership
- Radio interview and article on The Body Website about
ME
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ADVOCATE
State health officials vote to track ME/CFS
- 2 ME/CFS questions voted “optional status” on Behavioral
Risk Factor Surveillance System annual survey
- At least 70% of health officials voted for these questions
as important
- States who use questions will receive some funding from
CDC and their state health departments
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ADVOCATE
Congressional Advocacy (in collab. w/ SMCI & MassCFIDS)
- March: 44 Representatives signed letter to House
Appropriations Committee advocating for ME
- Current Actions:
○ Letter to House Subcommittee requesting hearing on clinical care crisis of ME ○ Senate Resolution 508 supporting research & medical education for ME
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#MillionsMissing 2018
Photos 1-3 Credit: Stephanie Giglio, Photo 4 credit: MC Shaw
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REACH & ADVOCATE
#MillionsMissing 2018
- Public demonstrations in over 100 cities globally.
- 250 virtual actions by home-bound patients
- Over 7,000 signed letter to Francis Collins at NIH
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ADVOCATE
Demands for ME Research Outcomes from NIH:
- A Diagnostic Test (3 and 10 year goals)
- Clinical Trials (1.5 and 10 year goals)
- Treatments (3-5 and 10 year goals)
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ADVOCATE
Demands for ME Research Actions from NIH:
(within next 12 months)
- RFAs
- Case Definition
- Program Announcements
- Intramural Study
- Administrative Supplements
- New collaborative research centers
- Strategic Plan
- Outreach & Engagement
- Data repository & Biobank
- NINDS home & funding policy
- Clinical Care
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DEATHS
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Harvey Carden
(1954-2018)
US Army Veteran. First had CFS symptoms in 1973. Severe mid 80s. It never went away. Photo: Harvey Carden on steps of Michigan State Capitol giving a speech for #MillionsMissing in 2016.
Photo Credit: Pete Rigney
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“NIH and HHS, I’m so tired of fighting. Please help us.”
~ Harvey Carden
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www.meaction.net info@meaction.net
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