BAD COMPANY

Why Some Patients Have Had Enough 
of the CAA

When it comes to the CFIDS Association of America, patients Khaly Castle, Otis Quila and Liz Willow have reached critical mass.  They’ve just devised a “Petition to disassociate from CFIDS Association of America as our advocacy representative” because they believe that the CAA isn’t doing its job.  In one day, 205 patients have signed the petition, with a goal of one thousand signatures from all over the world.

Castle, Quila and Willow will present the petition at the May 2011 Chronic Fatigue Syndrome Advisory Committee meeting and also let the NIH and the CDC know that the CFIDS Association no longer speaks for the majority of patients. Explains Liz Willow, “[NIH administrator] Dennis Mangan realizes the patient community is diverse and reaches out to a number of individual advocates, Facebook page founders and bloggers on a regular basis.  But the CAA still seems to be perceived by many government officials as representative of patient wishes.  We didn't feel we could wait for a new organization to establish itself before rolling out the petition.  Patient sentiment for this type of petition is high, and we wanted to capture that momentum.”

Brewing dissatisfaction
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. 

That’s when Castle started a new post, “CFIDS Association— What do you want to say to them?”  Gathering the hundreds of patient comments and questions that resulted, she forwarded them to Spotila.  But in the end, says Castle, “We got very little feedback and little or no visible change from 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.”

Castle says that with McCleary’s response to the PACE trial, it’s clear that the CAA’s advocating for a chronic fatigue light kind of illness that’s primarily about generalized fatigue—as opposed to the serious neuroimmune disease that ME/CFS really is.  The result is “muddying the diagnostic waters,” Castle says.  “This is not only unhelpful, it's extremely harmful.”

Suzanne Vernon and spinal fluid
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.” 

Vote to be heard
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.”