- Additional comprehensive evidence that ME/CFS is a molecular disease was presented.(Yet another nail in the PACE coffin!)
- Experts in metabolism, immunology, genomics, neurophysiology, electrical engineering and bioinformatics presented data.
- We learned about innovative ways to find new pain drugs and saw elegant evidence of a clear connection between the immune system and the brain.
- The scientists decided to continue as a “Working Group”, and are already planning multiple new ways to work together to facilitate and accelerate progress.
- Nobel laureate Mario Capecchi noted how important patient participation is in studying any disease, and how impressed he was with the amount of ME/CFS patient participation!
- In Ron Davis’ concluding remarks he stated that it is clear that what is missing is funding. He described ME/CFS as “a horribly underfunded disease”. Progress has been impressive despite the limited resources, but it is clear that more funding is needed to unravel this mystery and find treatments and a cure fast.
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the