Allison Ramiller (left) before attending the breakout session Patient Perspective: Learnings and Strategies for Partnership in Research (right) that featured PCORI patient partners Sonya Ballentine and Martie Carnie, Al Richmond from Community-Campus Partnerships for Health, and other stakeholders in research
Solve M.E. Director of Research Programs Allison Ramiller recently attended the Annual Meeting of the Patient-Centered Outcomes Research Institute (PCORI) in Washington, D.C., where the theme was Making a Difference: Using Patient-Centered Research Results in the Real World. PCORI has funded more than $2 billion in research and related projects. The investments made by PCORI influence research to make it be more patient-centric and focused on outcomes.
Allison reports, “It’s on us as patient advocates to keep building on patient involvement and ensure true partnership in research. The PCORI conference emphasized that the focus of research should be on shifting paradigms when needed to bring treatments and outcomes that matter most to people living with chronic and other diseases. It was an inspiring couple of days and I’m excited to carry forward insights and connections from PCORI into the development of the You + ME Registry and other initiatives at Solve M.E.”
Solve M.E. supports our coalition partners at Friends of PCORI Reauthorization for nationwide advocacy efforts to successfully #ReauthorizePCORI. PCORI is responsible for $2.4 billion in research investment since FY2010.
Watch all of the recorded PCORI sessions here.
Video and Transcript Available for NIH
August 2019 Advocacy Call
Since 2016, the National Institutes of Health (NIH) have hosted regular conference calls to improve transparency and stakeholder input. During these calls, NIH shares updates on research and provide an opportunity for community members and advocates to share their thoughts on NIH’s efforts. You can access a schedule for these calls at: http://go.solvecfs.org/e/192652/mecfs-events/21nzbl/129637813?h=NtSf0OBBmVu6TzfTmeIKdLE11VsBOEi20u3Be8BuY2I
In case you missed the Group’s Advocacy call in August, video and a transcript of the call are now available. Dr. Vicky Whittemore (Program Director at NINDS) introduced speakers Dr. Andrew Breeden, Dr. Avi Nath, Dr. Joe Breen, and Dr. Beth Unger on the call, and took questions from community members.
ME/CFS Advocate to present at EU Committee
EU ME/CFS Advocates Francis Martin and Evelien Van Den Brink are leading a petition calling upon the European Parliament to commit significant resources to ME/CFS research.
The next meeting of the EU Parliament Committee on Petitions will include a presentation from Evelin Van Den Brink and public debate about ME/CFS. ME/CFS will be discussed on October 3 at approximately 11:05 am Central European Summer time (CEST) / 7:05 pm Eastern Standard Time (EST). You can view the debate by visiting http://go.solvecfs.org/e/192652/ep-live-en-committees-schedule/21nz9v/129637813?h=NtSf0OBBmVu6TzfTmeIKdLE11VsBOEi20u3Be8BuY2I and selecting “the Committee on Petitions” on October 3 at 7:00 pm EST.
Francis and Evelien have been working on this project for over a year. They expect a decision about the petition will be made by the Members of the Committee, live in public, right after the debate.
Read Solve M.E.’s letter to the President of the EU Parliament HERE.
Learn more about this EU citizen petition and take action HERE.
Contact Francis and Evelien at firstname.lastname@example.org