of the CAA
The dissatisfaction with the CAA has been brewing for a long time but deepened after the first paper linking XMRV to ME/CFS was published in October of 2009. Khaly Castle observed that the CAA maintained “an air of skepticism when they could have instead taken this new piece of science and turned it into a platform for some pretty powerful advocacy. In my mind,” Castle contends, “it just confirmed that this group is nothing but an arm of the entity it had contracted itself to for so long: the CDC.”
Brian Smith and Jennifer Spotila
A blogger as well as a patient, Castle in 2009 wrote two articles on the CAA that garnered huge response from patients. (To read the articles, click here and here.) After Castle posted them, CAA board member Brian Smith told her on Facebook that the CAA was listening. “Then I never heard from him again, despite friend-requesting him,” Castle recalls. However, Jennifer Spotila, who at the time was board president, contacted Castle directly, asking her to forward whatever patients wanted to tell the CAA.
McCleary's response to the PACE trial
Most recently, it’s been CAA President Kim Kenney McClearly’s reaction to the PACE trials that Castle, Quila and Willow have found problematic. Of the PACE trial, which endorsed cognitive behavioral therapy and exercise for CFS, McClearly rattled off to CNN a peculiar commentary that appeared to endorse the bogus findings: “I think it would be challenging, at least in the U.S. system, to purchase the services that they've tested in this trial,” McClearly stated, adding this: The alphabet soup of acronyms that represent the interventions used in Britain is “just not something that our health care service offers, is reimbursable, or is really available here.” And, finally, this lackluster shrug: “It's kind of a shame that we're still limited to talking about approaches to coping mechanisms as the only therapy that's available.”
McCleary isn’t the only CAA representative who’s been a problem. Last week Dr. Steven Schutzer’s team at the University of Medicine and Dentistry of New Jersey published on a distinct abnormal protein signature in the spinal fluid of ME/CFS patients, which apparently was a yawn to CAA Scientific Director Suzanne Vernon, who told the Wall Street Journal’s Amy Dockser Marcus: “It’s difficult to have a diagnostic test based on spinal fluid. You can’t just go poking everyone in the spine.”
On the Phoenix Rising patient forum, so far 147 patients have participated in a new CAA poll, with 138 voting that it’s time for a change in direction and leadership. Cast your vote on Phoenix Rising and be heard. If you believe the CAA doesn’t speak for you, cast your vote on the “Petition to disassociate from CFIDS Association of America as our advocacy representative.”