Here I sit on a Sunday morning at my church, synagogue, temple, mosque, sacred space of inclusion – my laptop – emailing Pam Hyde, Administrator of the Federal Substance Abuse and Mental Health Services Administration (SAMHSA) in the U.S. Pam asked if the Today Show presented a balanced point of view of ECT treatment itself — pros and cons. My email to her of a few minutes ago stated “The Today Show was not balanced at all which is why we did the ‘One sided…’ press release (see below). Our wisdom from lived experience continues to be blocked by mainstream media outlets. How can we work more effectively together so that by 2020 ‘Nothing About Us Without Us’ becomes a reality in America?” (Side note – upon 2 minutes of reflection I shortened the time line when I realized it was achievable if the administration and major agencies in the U.S. made it a priority.)
My response to Pam continued “Here’s a link to the Today Show segment, along with a transcript. They mention side-effects but give them very short shrift. The key factor is that we gave them five willing shock survivors standing by their phones to be interviewed in preparation for being on the show, and the producers only called one of them (Tom Irr) and then later called to tell him that they “probably” wouldn’t be airing the segment. But, of course, they chose to air the segment, and only interview people who were happy with their ECT experiences — one of whom is a famous author, which gives his testimony more weight. We all know that many people are happy with their experiences. That’s why most of us are not asking for a ban on ECT — just for the opportunity for truly informed consent so that people can weigh the potential benefits along with the serious risk of adverse effects.
The principle of “Nothing About Us Without Us” requires both that the story of ECT include the stories of those harmed by it, and that decisions regarding its use be made with the full participation and consent of those affected. Given the risk brain damage, memory loss and, with it, years of a life; theories that the “positive effects” of ECT are in fact a side-effect of brain injury (shock) which some experience as a form of numbness or euphoria; evidence of substantial relapse following ECT , of high hospital re-admission rates, and the lack of solid scientific data regarding why ECT works at all; a fully informed person given a meaningful role in the decision-making process might consider carefully whether it is truly the best – or even last – resort.
For Immediate Release
National Mental Health Coalition Calls “Today Show” Electroshock Segment One-Sided
Coalition Recommends Balanced Coverage of Controversial Intervention
WASHINGTON, DC (8/22/13) – The National Coalition for Mental Health Recovery (NCMHR) urges “The Today Show” to provide balanced coverage of the risks of electroconvulsive therapy (ECT), in which grand mal seizures are electrically induced, usually to treat severe depression.
The NCMHR is responding to a one-sided segment about ECT that “Today” ran on August 20, 2013.
“We are disappointed, especially because two NBC producers had sought out ECT survivors who could attest to the disabling effects of this controversial treatment,” says NCMHR director Lauren Spiro, who was diagnosed with chronic schizophrenia. “The producers were given contact information for five willing individuals, but chose not to include them.” The producers later called this an editorial decision.
Mental health advocates demand that potential ECT recipients be told the truth about the risk of disabling effects – including permanent memory loss and cognitive deficits – so they can make an informed choice. These risks have been confirmed by researchers such as Dr. Harold Sackeim, a well-known proponent of ECT, whose 2007 study in Neuropsychopharmacology concludes: “this study provides the first evidence in a large, prospective sample that adverse cognitive effects can persist for an extended period.”
The Food and Drug Administration (FDA) continues to classify ECT equipment in its high-risk Class III category despite pressure from ECT equipment manufacturers to re-classify it into the lower-risk Class II.
ECT survivors speak about the devastating effects of ECT. In her acclaimed book, “Doctors of Deception: What They Don’t Want You to Know About Shock Treatment,” Linda Andre wrote, “Eventually you realize that years of your life have been erased, never to return. Worse, you find that your daily memory and mental abilities aren’t what they were before.”
“The research is clear: ECT causes closed head injury, temporary euphoria, then return of depression but with enduring memory loss,” says psychiatrist and NCMHR board member Daniel Fisher, M.D., Ph.D. He noted that, while many may experience a lifting of depression, this is temporary, but the disabling effects are permanent. Also, many ECT survivors say their depression was exacerbated by the stress associated with their ECT-related cognitive disabilities.
“We recommend more media coverage of innovative, non-invasive, cost-effective mental health interventions, including ‘peer-run services’ delivered by people who have recovered from severe mental health issues,” says Spiro.
Mental Health Liberation: Lauren shares her unfolding journey towards liberation which includes spreading Emotional CPR, engaging in Dialogues of Discovery based on her memoir (published Spring, 2014), building the National Coalition for Mental Health Recovery, and other adventures in service of reclaiming our shared humanity.