Mark VanNess and Staci Stevens were invited to present to Stanford's ME/CFS Initiative on July 24, 2018. The presentation focused on Workwell Foundation's latest research examining post exertional malaise (PEM) after a 2 day cardiopulmonary exercise test (CPET). We are grateful for the opportunity to share our work and discuss strategies for accelerating research in ME/CFS.
Workwell Editorial Published
Todd Davenport spearheaded a letter to the editor published in the British Journal of Sports Medicine. "Checking our Blind Spots" highlighted the need for researchers and clinicians to take a closer look at the biases regarding ME/CFS and graded exercise therapy. The letter noted that "a disturbing corollary is that patients with ME/CFS are being harmed by a flawed standard of care, and makes the recommendation that "We should follow the example of engaged patient advocates and citizen scientists in ME/CFS by involving patients as advisory board members on trials and as reviewers on published evidence summaries."
"We hope that peer reviewed letters like this will begin to change perceptions about the illness and move the field toward data driven treatment strategies that help patients."
Health Rising Blogs about Workwell's Disability Testing. "You don't need to be a large organization to make a big difference. You simply need to be committed to a field (and producing jaw-dropping results doesn't hurt either)" ~Cort Johnson