“Advancing Research” is central to Bateman Horne Centers’ mission of empowering patients and improving clinical care for ME/CFS and FM. The trick of course is figuring out the best way to advance research. This is a decision any organization targeting research into these complex conditions must wrestle with.
At the 2016 IACFSME conference it was exciting to hear about the cutting edge research that was underway. Yet I was disappointed with how few interdisciplinary teams there were. In my opinion, they are essential for figuring out a disease as complicated as ME/CFS.
Assembling the Interdisciplinary Dream Team:
- The ideal dream team for ME/CFS includes first and foremost the patient. No one knows ME/CFS better than someone suffering with this disease and they provide an expert component to the interdisciplinary team that can not be achieved without them.
- Next, the clinical expert. Someone who has cared for patients – preferably hundreds of ME/CFS patients – and has systematically evaluated and documented their observations brings clinical intuition that is essential for research progress. Ideally any dream team would include 2-3 clinical experts (In my opinion, research should not occur without clinical expertise.)
- The research scientist(s). In my 20+ years of ME/CFS research, the best attribute of a researcher is having met someone with ME/CFS. First-hand patient connection gives a researcher context for there scientific endeavors. It is helpful to have researchers from a number of disciplines – genetics, molecular biology, microbiology & infectious disease, neuroscience, physiology, to name a few.
- Then there are the data scientists – the ones that will take all the puzzle pieces and put the big picture of ME/CFS together.
The ME/CFS Collaborative Research Centers funding opportunity was a dream team call to arms. We know from Cort Johnson’s blog post on HealthRising (HealthRising.org/blog/2017/06/02/nih-research-centers-chronic-fatigue-syndrome) that 10 applications were submitted to the NIH.
The Bateman Horne Center is a partner on 4 of these applications:
- Unutmaz Dream Team. Immunologist and HIV expert Dr Derya Unutmaz has assembled an outstanding team of investigators from a number of institutions to tackle ME/CFS. The Bateman Horne Center serves a principal role as Clinical Core.
- Davis Dream Team. Ron Davis, geneticist and biochemist, is leading a dream team that will spearhead innovative diagnostics and dive deep into mechanisms of disease. The Bateman Horne Center is the Clinical Core on this application too.
- Klimas Dream Team. If ever there was an ME/CFS clinical expert, Dr. Nancy Klimas is it! Many of us are familiar with Nancy’s neuroimmune research and her amazing team including computational biologist Gordon Broderick. The Bateman Horne Center will work on a clinical project to use our existing Research Ready patient samples and data as well as recruit new patients.
- Lipkin Dream Team. Virus hunter Ian Lipkin is continuing his collaboration with top clinical experts and the CFI to get to the bottom of ME/CFS. The Bateman Horne Center will collaborate by assessing orthostatic intolerance using the 10 minute NASA lean test on a group of our Research Ready patients and healthy controls.
We are excited to be a major player in so many of the dream team applications and look forward to sharing further developments.
The Bateman Horne Center fills a distinct and important role in the ME/CFS and FM world. We are squarely focused on bringing these diseases to the mainstream and ushering first-class care for all. Playing a critical role on so many important and diverse research initiatives is one way we will see this dream become a reality.
To learn more about this funding opportunity, the other applications and more about Dr. Derya Unutmaz, check out Cort’s blog posts:
“I would say this is one of the most exciting grants and teams I had the fortune to assemble, despite the arduous process of putting it together.” Derya Unutmaz on the ME/CFS NIH Research Center Application
“The Trans-NIH ME/CFS Working Group is pleased with the response to the ME/CFS RFA, which demonstrates an increasing interest in ME/CFS research from the research community.” Vicky Whittemore, the NIH liaison to ME/CFS and leader of the year-long effort to produce the research centers