Zaher Letter – December

zaher-letter“Trust, but verify” was a favorite adage of President Ronald Reagan which defined, at least in part, the policy doctrine of a sensitive, tumultuous Cold War era. That simple, yet poignant, phrase continues to inspire variations like “Distrust and verify” or “Verify and verify,” which we often hear from officials on complex issues. So I asked myself—in light of the increased pressure on government entities to study and fund ME/CFS in 2016—are any of these adages useful in our government relations? Do we need to pivot to a new approach following this year’s Institute of Medicine report and unprecedented statements from National Institutes of Health leadership describing ME/CFS as one of the most challenging illnesses of our time?

As I mulled this over, I realized that, while a healthier relationship with federal agencies is long overdue, trust is an inconsequential factor and should not be part of our mindset in the first place. After all, skepticism is what hones scientific advances in creative industries and keeps us honest. And in the pursuit of knowledge, we must doubt, analyze, track and scrutinize any stakeholder, large or small. Productivity and focus—not trust—must shape our engagement going forward. Trust is an utterly personal exercise that is ostensibly transient as it shifts with time and other variables. We are better served as a research community shedding those factors enmeshed in personal characteristics, focusing instead on durable alliances built on objective metrics and true deliverables.

Not relying on trust in this new era must not be confounded, however, with any negativity or restraint. To the contrary, establishing credibility in both directions is both a key requisite for any productive engagement serving a common goal and an objective of our organization. It follows, then, that government officials who understand the magnitude of the ME/CFS problem must commit the necessary resources toward solving it and articulate a clear vision for the future. They are by default our collaborators as we build stronger public/private partnerships and forge a new path forward.

In short, I am not adopting the good old “Trust, but verify” adage for ME/CFS, but embracing instead the “Fund and multiply” doctrine. We need our counterparts in government to fund good work with transparency and vigor and multiply their efforts considerably. Only then can we begin to make up for decades of research deficit and a severe knowledge gap. It is the responsibility of the government to find a cure for diseases afflicting millions of its citizens, not the other way around. “Fund and multiply!”  And Happy Holidays!