MEadvocacy.org has published two blogs regarding NIH’s invitation to Edward Shorter to speak at their NIH Clinical Center on November 9, 2016. Researchers, advocates and patients were opposed and fought this presentation because it would be used as propaganda to validate the unscientific psychosomatic view of myalgic encephalomyelitis (ME). See our blogs for more information: Systemic Bias Continues at NIH and Our Response to Dr. Koroshetz' Refusal to Cancel Lecture by ME Disease Denier.
Here is what Dr. Janet Dafoe, a clinical psychologist, shared on her FB post about her spouse Dr. Ron Davis, a world-renowned geneticist and ME/CFS researcher:
Despite the many letters to NINDS Director Walter Koroshetz demanding the cancellation of this presentation, it took place as scheduled with an audience that included personnel heavily involved in the ME clinical study. Shorter was actually introduced by the lead investigator of the clinical study, Dr. Brian Walitt.
Dr. Dafoe also shared on Twitter that Dr. Davis was advocating for a congressional investigation if Shorter’s lecture was not canceled.
It is a weak advocacy method to keep insisting on a “seat at the table” with the government when this “coveted seat” only serves to advance the government’s agenda. At times like this, when our demands are met by a brick wall, our advocacy methods need to take a new and different course.
We can then use our efforts to fight from the “outside” and seek collaborations with outside forces such as our congressional representatives. Falling for a false sense of inclusion is a dangerous course to take and will retain the status quo of NIH bias.