In 2012, The U.S. Centers for Disease Control and Prevention (CDC) instituted the “ME/CFS Stakeholder Engagement and Communication conference calls (SEC)” (previously called PCOCA) series with the stated purpose of sharing information with those interested in ME/CFS as part of their regular outreach and communications efforts. These calls are billed as a form of engagement with the community, but this is just by name –not reality.
CDC’s Phantom Engagement
CDC’s claims of transparency and stated desire to engage with the ME/CFS community is debunked by their consistent underhanded actions. Their “engagement” call is, in fact, an hour-long one-sided communication. CDC placed all callers – a group of very sick disabled people – in a silent mode for the hour-long call. CDC falsely alleged they can’t take live calls when many large government events take live questions all the time.
CDC’s 60-minute call devoted 50 minutes to their invited speakers – leaving only a couple of minutes in the end to cover the many crucial questions sent in by ME patients and advocates. CDC kept us in the dark as to whose questions they selected – never giving us the actual names.
Read blog here