January 2017 Research 1st – Dr. Nahle Letter

zaher

Dear Friends,

With every new year, we renew our commitment to remain the uncompromising force working on behalf of patients. Indeed, our dedication to finding solutions to this disease has never been stronger or better focused. And while we scrape a dollar from here and a penny from there to survive as a non-profit research organization, we are unashamedly proud to see our investments in research doubling if not tripling across the disease spectrum as a result of this frugality.

Last January, we committed to the following:

  • Creating environments in which real and durable research and advocacy collaborations develop and flourish, reframing a narrative through which all voices in ME/CFS can be heard and respected. Through unity and cross-pollination, we felt we could effectively deconstruct stubborn medical challenges.
    • True to our promise, we acted as an agent for change and unity at every opportunity. We met with government officials and science leaders, advocated for policies and federal actions, and authored dozens of opinion and technical pieces addressing current ME/CFS affairs across the science, research, and policy landscapes. We assertively participated in conferences and convened some of the top minds in ME/CFS clinical care and research to collaborate on the key issues facing ME/CFS through our Research Advisory Council and other think tanks.
  • Supporting quality work that is original and bold, building on the momentum of 2015 and the positive indicators it brought.
    • Our support of innovative research projects in bioenergetics, autoimmunity, genetics, and neuroendocrine functions now extends from the US to the UK, Germany, and Australia. This commitment to quality research brings new talent to the field and strengthens the existing human capital in the disease.
  • Investing aggressively in research initiatives that would emphasize the role of patients as partners—not subjects—and enable the creation of measurable and tractable impact toward understanding the pathophysiology of ME/CFS.
    • With targeted investment in severe knowledge gaps—such as pathway and biomarker discovery, immuno-senescence and cell-cycle energetics, drug screening and functional genomics, diagnostics and advanced imaging, and metabolomics and big data research—we are creating value across every phase of the discovery process. These are the elements of our growing portfolio of investment in ME/CFS at some of the most prestigious medical centers and research establishments in the country, including Washington University in St. Louis, the University of Washington, Memorial Sloan Kettering Cancer Center, Cornell University, and Metabolon.

Exactly a year ago, I borrowed the words of President Lincoln in a time of political uncertainly: “The dogmas of the quiet past are inadequate to the stormy present. The occasion is piled high with difficulty, and we must rise with the occasion.” This has never been more applicable to the here and now. That is precisely why we are trying to shift the paradigm and alter the status quo.

You have our steadfast commitment to double our efforts in 2017, building on our activities of this past year. I wish you all the gift of health.

Yours,

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