Document KGYka3035kxM8grONvG6NpxN6

To: From: Sent: Subject: Hupp, Millan[hupp.millan@epa.gov] Solve ME/CFS Initiative Wed 7/19/2017 11:29:42 PM Research 1st | July | In depth on the CDC updates and p atients View it in v o u r browser. /v\ Dear Z Friends, Welcomed Development at the CDC The recent updates to the ME/CFS information page on the Centers for Disease Control and Prevention (CDC) website is a key step forward in refining the narrative about ME/CFS and purging the disease space from noxious and dated inaccuracies. To this end, the CDC website has been streamlined and improved with the most noticeable change being the removal of the cognitive behavioral therapy (CBT) and graded exercise therapy (GET) as recommended treatments for ME/CFS. This area has been a longstanding... READ MORE Yours, Zaher Nahle PhD, MPA Chief Scientific Officer and Vice President for Research WW3liIHI til M E /C F S c o n v e rs a tio ri at the hi'fcf * le v e ls of 111i NIH The Advisory Committee to the Director of the National Institutes of Health (NIH) held a full 17cv01906 Sierra Club v. EPA ED 001523B 00000365-00001 board meeting for two days last month at the N1H Campus in Bethesda, Maryland. The purpose of the Advisory Committee is to provide advice on matters pertinent to the NIH mission responsibilities in the conduct and support of biomedical research, medical science, and biomedical communications. This video, part of the NIH's goal of transparency, is a rare opportunity to view the NIH in action at the most senior levels. This recent meeting included a report from Dr. Walter Koroshetz, Chair of the Trans-NIH ME/CFS Working Group, and a brief exchange regarding ME/CFS with Advisory Committee Member, Dr. Ian Lipkin, Director Center for Infection and Immunity at Columbia University and noted ME/CFS researcher. VIEW MORE CDC, at long last, updates key information for iatients 17cv01906 Sierra Club v. EPA ED 001523B 00000365-00002 After years of advocacy and a slow revision process, the Centers for Disease Control (CDC) have released the public component of their new ME/CFS website. Although slow in coming, these are mostly positive changes. These revisions are the result of the participation of over 50 stakeholders in... READ MORE 1Q II On June 29 and 30, the Federal Chronic Fatigue Syndrome Advisory Committee (CFSAC) met via webinar in the first official meeting of the 2017 calendar year in two half-day sessions. The meeting barely captured a quorum with, at times, fewer than 3 voting members present as a result of the delayed transition to new membership. This meeting was co-chaired by the outgoing chair, Dr. Susan Levine, and the new incoming chair, Dr. Faith Newton. READ THE SUMMARY by the SMC! team of this most recent CFSAC meeting and READ AN EXCLUSIVE commentary on CFSAC from outgoing chair, Dr. Susan Levine. 17cv01906 Sierra Club v. EPA ED 001523B 00000365-00003 17cv01906 Sierra Club v. EPA ED 001523B 00000365-00004 On July 10, the Trans-NIH ME/GFS Working Group hosted an advocacy call to provide updates to the community and receive stakeholder input regarding the current ongoing programs. The call summarized the NiH's activits since May including: 1) an update on the timeline of the current grant proposal review process for ME/GFS, 2) NiH's actions on ME/CFS awareness day, 3) an update on the NiH's intramural study on ME/CFS, 4) a summary and report on the conferences NIH has particpated in regarding ME/CFS, 5) an update on the NiH's particpation in the Common Data Element (CDE) project and 6) a call for additional neuro-bio-bank donations for ME/CFS. The Trans-NIH ME/CFS Working group team also fielded questions and comments from patients and stakeholders. To listen to a recording of the call or view the transcript visit: http://go.soivecfs.orq/e/192652/me-cfs-advocacv-call-iulv-2017/6cbfx/38547217 17cv01906 Sierra Club v. EPA ED 001523B 00000365-00005 Earlier this month the National Institutes of Health (NIH) released the updated financial data for categorical research spending. These figures include updated estimates for Fiscal Year (FY) 2017, ending September 30, 2017, The Solve ME/CFS Initiative is disappointed to report that the projected estimates for FY 17 are being reported at lower numbers than expected... READ MORE The work of SMCI is entirely fueled by gifts large and small from people just like you. 17cv01906 Sierra Club v. EPA ED 001523B 00000365-00006