It’s hard to beat a three for one deal – you put a dollar in for ME/CFS research and the McGrath Family Foundation will match it with three more dollars. It’s particularly hard to ignore when it’s going to a research team with a proven record of success. The CAA’s research team is nothing if not innovative. They are determining
- if ME/CFS patients brains are functioning as anerobically as their bodies seem to be
- if standing up causes a flare of free radicals that causing you to tip over, grow dizzy or at the very least ditch several points of IQ
- if exercise causes CFS patients gut microflora to go bananas – spiking an immune response – and causing post-exertional fatigue
- if exercise causes sensory, immune and endocrine genes involved in pain, fatigue and blood vessel functioning to spike resulting in pain, fatigue and you know the rest
- if immune and other gene expression networks hold the key to subsetting CFS
- a computer program that develops novel theories for CFS using existing research
That’s not all. The CAA submitted a grant to explore auto-antibodies in CFS BEFORE the Rituximab finding came out. That could be the first study to verify the presence of an auto-immune disorder in ME/CFS.
10/15: 1? - Three for one is good odds, indeed, but it’s actually much better than that. The $650,000 the CFIDS Association three years ago pumped into CFS research has turned into over 15 published papers and almost $5,000,000 in hard to get NIH grants. So instead of 3:1 think 10 or 15:1..Your $20 or $50 may actually be worth $200 or $500 or more.
That’s big money in the CFS research world.
Think biomarkers (Broderick, Light). Think treatments and interest from a pharmaceutical company (Light). Think recognition and legitimacy (everybody). That’s what you’re investing in in this program.
Building a Research Community – Under Suzanne Vernon’s leadership the CAA’s teams have been almost uniquely collaborative -sharing and incorporating their findings with each other early in the process, and even in some cases, merging their studies. Suzanne Vernon is effectively building a diverse research community devoted to understanding CFS that has also got each other’s back in a rough research world.
Simply getting researchers to take on CFS is a an accomplishment and Suzanne Vernon has been very good at getting other researchers interested in the field. One her big ‘catches’, Dr.Gordon Broderick, said this about the Research1st program:
Through the Association and its supporters, we are slowly becoming one much larger and much better coordinated virtual research laboratory, one with clear goals and where our roles and interactions as scientists, clinicians and educators are beginning to crystallize. This sense of community has been a vital motivator and has kept our group engaged and focused, enabling us to weather the criticism of more traditional academia and the comparatively barren funding landscape.