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 added Medical & Scientific Outreach Director (Jaime Seltzer) 3
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 4
CONNECT 5
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. 6
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 7
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 8
ADVOCATE 9
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 10
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 11
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 12
#MillionsMissing 2018 Photos 1-3 Credit: Stephanie Giglio, Photo 4 credit: MC Shaw 13
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 14
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) 15
ADVOCATE Demands for ME Research Actions from NIH: (within next 12 months) ● RFAs ● Strategic Plan ● Case Definition ● Outreach & Engagement ● Program Announcements ● Data repository & Biobank ● Intramural Study ● NINDS home & funding policy ● Administrative Supplements ● Clinical Care ● New collaborative research centers 16
DEATHS 17
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 18
“NIH and HHS, I’m so tired of fighting. Please help us.” ~ Harvey Carden 19
www.meaction.net info@meaction.net 20
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