I wanted to share this letter. I'm quite saddened that it has come to this. However, I cannot ignore the public relations disaster that has unfolded over the last week. The multiple missed opportunities to educate the public and the misleading quotes repeated to several major news outlets was just too much.
Please continue to support the work of researchers like Drs. Bateman, Alan and Kathy Light by making directed donations via OFFER Utah.
Please continue to support the work of researchers like Drs. Bateman, Alan and Kathy Light by making directed donations via OFFER Utah.
I am writing to cancel my monthly contribution to the CFIDS Association of America via the Chairman's Circle. It saddens me that things have reached this point.
Cancellation of my monthly contribution to the CAA is a vote of no confidence on Kim McCleary. I appreciate that she has been with the CAA for many years, that she has relatives with CFIDS, and that she has worked hard for the organization. Unfortunately, I feel that nothing short of the survival of the CAA is at stake as more and more patients are alienated and support of the CAA by the patient community erodes. Ms. McCleary's ineffective and misleading public responses to the recent publication of the PACE trial results and the barrage of dismissive articles in which she was quoted has been devastating. The CAA was completely unprepared to respond to a study that was no secret with controversial definitions of the disease, controversial treatments and which exaggerated the minimal amount of improvement in a minority of patients that were comprised of those who did not chose to abandon the PACE study, those who did not decline to enroll, and those who were not excluded from participating as they were too ill.
Under Ms. McCleary's direction, the CAA has repeatedly missed opportunities to educate the public, failed to highlight the dismal state of what is being passed off as science and a celebration of "significant improvement" in CFS, and side-stepped making a long over due and much needed public declaration on the important distinctions between chronic fatigue syndrome as defined by the CDC and the Canadian Consensus Diagnostic Criteria. Ms. McCleary's latest comments to the media regarding the PACE trial seemed to do nothing more than express regret that the "interventions" implemented in the PACE trial were too complicated to be made widely available in the US.
Having suffered from a severe viral onset and now experiencing, amongst numerous other symptoms, multiple documented forms of CNS pathology, I can only conclude that the chronic fatigue Kim McCLeary is referring to ("a life sentence, not a death sentence") is something quite distinct from the severe health problems that I now face.
My decision to discontinue support of the CAA was a difficult one. I am a strong supporter of the work being done by several of the CAA research grant recipients (and I found the 2010 webinars to be quite valuable). I will be redirecting my donations to the researchers themselves. I do appreciate that if a large number of CAA supporters were to follow my lead, significant and perhaps irreparable harm would be done to the CAA's research efforts. However, I can no longer ignore the fact that a greater degree of irreparable harm is being done by the repeated failure of the CAA to represent the patient community, an unsustainable situation which cries out for new leadership.
I look forward to the day when I can throw my unqualified support behind all of the efforts of the CAA.
Sincerely and most regrettably,
Shane _______