The Lyme Disease Science and Policy Forum took place at the Rayburn House Office in Washington DC May 19th. I attended. It was awesome and highly disappointing concurrently. Let me immediately clarify that any disappointment had NOTHING to do with the agenda, speakers, coordination efforts, etc. Many thanks and hats off to Bruce Fries from the Lyme Action Network for all his work. Many thanks also to all the wonderful presenters. I couldn’t have been more impressed.
My personal and greatest disappointment was the absence of congressional representatives at the Forum. There was a lack of “suits” I’ll call them; if you don’t mind. Evidently, congress thinks a global epidemic with financial consequences and huge amounts of human suffering is not a priority. There, I said it.
As I sat around looking at a sea of bright green clothing, I reflected on the senate representative meetings I participated in early that day. I doubt that the Chronic Lyme Disease agenda was ever even a small blip on their legislative radar. Congressional representatives didn’t attend the forum, because most did not know the gravity of the situation before our “chats”. However we do have a global epidemic and I think we got their attention.
During meetings with congressional staff, several of us representing the Lyme community shared brief personal stories as a prelude to Bruce’s presentation of facts. What facts? Too many to explain here, but in a nutshell: Facts about how the CDC, NIH and lack of Gov’t Agency oversight have been at the core of the epidemic mis-management. Following the big “reveals”, we transitioned into requests for a portion of the 1.1 billion dollars the Whitehouse earmarked for the Zika virus and more effective congressional oversight of the the CDC. We pleaded the case for money to fund research for an accurate diagnostic and effective therapeutic. We shared the numbers…. Each meeting was a half hour. It is impossible to explain this crisis in anything less than a full day seminar– or five, but we did the best we were able. I think the looks on our faces probably said the most though. While we were all composed, well dressed and coiffed and at our Lyme best, most of us were in the same unmistakable place…
“I’m expending mega watts of energy to get through this day because it is of dire import. But when I wake up tomorrow and three more days after that, I will be paying dearly for the effort.”
You can’t hide suffering in anyones’ eyes. I met so many amazing people at this meeting. We share a common journey and fiery spirit that enables us to endure such horror and still find a way to fight like warriors to make it stop happening to our children. The rate of suicide is evidence of what our future will be if we don’t start addressing both the physical and mental illness epidemic that is created by the late stage lyme infection rate that is rising like a weed out of the ground in spring (or a viagra user – snort.)
As the Forum progressed I was internally assessing the value of this new website and crowd funding effort. (“Our Lyme Nation” and United We Heal) Dr. Ronald Stram, Center for Integrative Medicine, was wrapping up and spoke the truest words. I’m paraphrasing, but the gist of it was, “We as people are going to have to address this at a grass roots level.” To me that sounded like perhaps the “Our Lyme Nation” movement is on the right track. And it is a movement.
Aside from getting our unified voices heard, getting an accurate diagnostic to market, and funding an critical charity for continued research and human aide, we are creating a paradigm shift. Our grass roots effort will prove that united people have the power to solve real problems without intervention of governments or reliance on venture capital.
I should point out that there were two presentations from Lyme diagnostic firms at the Forum. We heard two great speakers from Translational Genomics Research Institute and Ceres Nanosciences. They are making wonderful progress toward a diagnostic. However, that should not preclude getting funding to all entities that can deliver on the accurate diagnostic mission.
This is where United We Heal comes in. Flourish Partners is a consultant firm with brilliant scientists that work outside the US. They are not a life-science mega-firm with unlimited funding. What they do have is groundbreaking science not currently being attempted by anyone else and they are confident they will be able to bring an accurate diagnostic to the marketplace within 12- 18 months – provided they obtain needed funding. The best part, is the once they are successful, profits will fund a charity for research and human aide. Think of the good that can be done. Just because they are outside the US doesn’t mean that we can’t fund their efforts. There is too much at risk NOT to.
“Unite We Heal” & “Together We Flourish” This is the Lyme Revolution.
Listen to CEO of Flourish Partners, Helen on. Lyme Ninja Radio – With Helen…
Pictured left to right: Allie Cashel, Dave Conner, Linda Osborn and Raven Liberty.