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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Forgotten Plague on FB said:Huge thanks to Elizabeth Burlingame for setting up a meeting with CDC to deliver a copy of Forgotten Plague. Her daughter Liz, aged 48, is featured in the film and has been sick for 25 years. Mrs. Burlingame was also the organizer of the #MillionsMissing protest at CDC in Atlanta.
We met with Dr. Jennifer McQuiston, Deputy Director of the Division of High-Consequence Pathogens. She is the "boss" for Dr. Elizabeth Unger, who oversees ME/CFS at CDC.
Dr. McQuiston is keen to set up a CDC screening of Forgotten Plague, for the entire Division of High-Consequence Pathogens, a group she says is responsible for all the "extreme diseases," which include leprosy, ebola, mad cow, and yes, ME/CFS.
Per the demands of the #MillionsMissing protest, we made the CDC's educational information for doctors a major action item in the meeting. The CDC has continued to include cognitive behavioral therapy (CBT) and graded exercise therapy (GET) in its treatment guidelines. We know these treatments to be very harmful to patients. This led to a discussion into the PACE Trial, which advocated for those types of harmful, or at least unhelpful, ME/CFS treatments. CDC uses an evidence-based review of the literature to determine treatment guidelines, and unfortunately, the PACE Trial remains a part of that literature.
So next, we explained the ongoing work by many high-level scientists like David Tuller to critique the methodological flaws in the PACE Trial, which include conflict of interest, selection criteria, and a high patient dropout rate, among many other problems.
We hope to keep an open line of communication with Dr. McQuiston and to be present when CDC screens the film at their world headquarters. The meeting was positive and empathetic, but it's obvious it will take many more protests, meetings, and congressional action over the next few years to truly change the culture of the medical establishment toward this disease. Yet, as the protests and actions across the world this past week have proven, the possibility for change is coming ever more into focus.
