October 2017 Research 1st – Dr. Nahle Letter

October 20, 2017

Dear Friends,

On Saturday, October 14th, we held our annual Discovery Forum in Washington, DC. The forum, now in its second year, brought together leaders with affiliations in academia, biotech, government, research, and clinical settings. The driving concept of the forum was to be disrupt the status quo, bring novel perspective of value to the field, and catalyze cross-functional collaboration. Participating speakers and luminaries were a true reflection of this extraordinary time in the history of ME/CFS. Their remarks, presentations, and commentaries echoed the notion that progress is occurring on several fronts and more work is needed to be done to capitalize on the palpable changes.

We present this special issue of Research 1st to inform our community about this event. As always, we welcome your feedback and continue to seek ways to improve. The forum was rich in quality and depth of discussions among the participants. We explored a wide range of topics—including basic science, clinical trials, biotechnology, epidemiology, medical education, policies, patient registries, and electronic health record systems. Participants also reflected on the broader history of the disease and ways to drive forward progress in ME/CFS research.

The Forum provided an important opportunity to discuss and evaluate the commitment from federal agencies, particularly the NIH and the CDC, to the field of ME/CFS research. The NIH and CDC both participated in individual presentations and separate discussions throughout the day. Among the topics discussed was the establishment of ME/CFS Collaborative Research Centers (CRCs) and the Data Management and Coordinating Center (DMCC), announced by the NIH in late September 2017. The leaders of all four centers (Drs. Lipkin, Hanson, Unutmaz, and Williams) were also present as speakers at the forum.

The forum followed a discussion with NINDS director Walter Koroshetz and hosted by Llewellyn King of the White House Chronicle link here. Similarly, the updates on medical information and authoritative redefinition of the curricula on ME/CFS at the CDC, which are of great significance in the fight for broader recognition and support of this disease. This was also discussed with the CDC official in charge of ME/CFS, Dr Elizabeth Unger, who presented her updates at the Forum.

At SMCI, we seek to add value and bring tangible change into our disease space. Using a variety of tools at our disposal, we work tirelessly to fill knowledge gaps. We invest in innovative ideas and partner with patients for real solutions. We continue to facilitate meaningful collaborations among stakeholders, lead conferences and think tanks, and advance medical education. We seek to create reliable health record systems for patients. We advocate for equitable research funding. We work constructively with medical agencies and government organizations towards solving ME/CFS. Our efforts are stronger because we work alongside the commendable activities and efforts undertaken by other ME/CFS organizations and grassroots movements. We believe that solutions to unlocking this debilitating disease will come from multidisciplinary efforts. This is reflected throughout this forum and achieved in the durable and meaningful partnerships we continue to develop.

Videos of the presentations and interviews will be released over the coming months.

We hope you remain connected with us and that you will find this issue informative and full of hope.

Once again, this is an important time in the history of our disease and need all hands-on deck now more than ever to effect real change!

Yours,

Zaher Nahle
Chief Scientific Officer and Vice President for Research
Solve ME/CFS