PEM, The PACE Trial, & Coyne
The ally who changed course mid-air to advocate for ME and denounce PACE
I wanted to share a blog post recently written by ally, James Coyne. You’ll find the link below, but I’d like to frame it up a bit first.
Years of research show Post-Exertional Malaise (PEM) is a signature feature of ME. PEM is a worsening of symptoms, or disease course, from unsustainable exertion. The science shows PEM is rooted in metabolism.
An elite athlete may run miles before their body switches from aerobic respiration to anaerobic respiration. That’s the point when the body’s cells stop converting glucose for energy and start producing lactic acid as a byproduct, it’s less efficient and uses more energy. Remember biology class with the glycolysis, oxygen, ATP and all that—that metabolic process is broken in ME. People with post-viral syndrome can hit the anaerobic threshold by showering, walking a flight of stairs, or simply sitting up when very severe. Our body has run out of available energy—it essentially thinks we just did an Ironman, all the time. Pushing past that anaerobic threshold repeatedly makes ME/CFS worse, often permanently.
Here’s just one study demonstrating PEM: Plasma metabolomics
One of the most troublesome and poorly understood aspects of ME/CFS is the phenomenon known as post-exertional malaise (PEM). PEM refers to a sudden rapid energy loss that occurs after doing minor physical and/or mental tasks–there is literally no energy left, beyond what is needed for survival.
Dr. Mark Zinn, Neurocognitive Research Institute, NCRI.org
Yet, to this day in 2023, many patients see doctors who will recommend “graded exercise therapy (GET),” a practice of incrementally increasing exercise over time. Seems inconsistent with a metabolic dysfunction, right? Well, it is, and it has caused a lot of harm. Where did this flawed recommendation come from? The PACE trail, published in The Lancet in 2011.
Knowing the history of the PACE trial is critical for patients and allies. When you have a well-meaning doctor suggest GET, it is rooted in this flawed study and its inclusion in subsequent guidelines. You need to be able to advocate for yourself by letting them know CDC and NHS have since rejected GET and it has been found to be harmful. Change in guidance happened in the US under the CDC in 2017 and in the UK under the NHS in 2021. Your doctor may not be aware of that.
PACE has essentially been debunked: the initial definition of ME/CFS used in the study was overly broad, endpoints were changed mid-stream and after data had been collected, objective measures of patient improvement (or lack thereof) were removed from the study. Independent analysis found the likelihood of recovery using the PACE trial methods was ZERO.
Here is a 5min video on how PACE impacted so many:
James Coyne: “…bad science that was being badly misrepresented by the investigators…causing clear harm to patients”
The blog post below is from someone who was on the front lines at the time, James Coyne. He looks back on his time advocating for the retraction of PACE. Coyne, a clinical psychologist, is a self-proclaimed skeptic who has no patience for pseudoscience nonsense and demands transparency in science. He has been a steadfast ME/CFS ally who has pushed back on the unfounded psychologizing of a proven biological disease.
JC Coyne aka CoyneoftheRealm: 7th Anniversary of My Trip to Belfast on Behalf of Patients With Chronic Fatigue Syndrome (substack.com)
A walk down memory lane, because to advocate is to know the history. The ME/CFS community owes a debt to those who stepped up and spoke out against the PACE trial, including James Coyne, Tom Kindlon, and David Tuller—to name just a few.
If not GET, then what? I’ll try to cover the widely accepted management strategy known as “pacing” in a future post. Until then, MEAction has a new guide on pacing, should you need something right away to share with your doctor:
Pacing Guide Clincians (meaction.net)
You can also watch short videos further explaining PEM and pacing on the Workwell Foundation website: