Reprinted with the kind permission of Cort Johnson and Health Rising
Numerous reports indicate that longtime ME/CFS pioneer Paul Cheney MD, Ph.D. died recently.
Talk about a major figure of the “old guard.” It’s hard, if not impossible, for many people today to get what a commanding figure Paul Cheney was and how excited people were at his communications in the 1990s and 2000s.
A superb communicator himself, Cheney was gifted with a remarkably effective communicator in one of his patients, Carol Sieverling, who provided a series of comprehensive, detailed, and effective reviews (which Cheney checked over) of Cheney’s work over the years.
Whether or not one ever saw Cheney, Cheney’s protocols provided hope, relief, and new options to many. Back in those darker days, Cheney’s communications provided, at the very least, the reassurance that an intelligent and thoughtful person knew ME/CFS was real and was working hard on it.
People came from around the world to see him. In the early 2000s, when for a brief period of time I actually had some money, I immediately headed straight for Paul Cheney. He was “the man.”
Baptism of Fire
Dr. Paul Cheney’s career spanned the modern ME/CFS era. His ME/CFS journey began in the 1984-85 Incline Village outbreak which gained national attention – and left him and Dr. Peterson ostracized by many in the small Nevada town. Moving on after a couple of years. Cheney moved to Charlotte for ten years (where he worked with Dr. Lapp for several years), then established a practice for a short time on an island off the North Carolina coast. Around 2000 he moved to Asheville, North Carolina where he remained for the rest of his life.
It’s hard to tell now exactly what Cheney introduced to the field and what he picked up from elsewhere, but he was clearly on the cutting edge of treatment possibilities for many years. Interesting ideas just seemed to flow from him. (This remembrance features Cheney’s work up to about 2007.)
Cheney was one of the early doctors to focus on the limbic system and the gut. His theory that ME/CFS progressed in three phases (the Three Phases of CFS) was novel for the time. He proposed that RNase L activation (a major theme in ME/CFS at the time but now debunked) resulted in first gut toxicity and later deep brain problems. He recognized the importance of cardiopulmonary exercise testing early and had a testing bike in his office.
Cheney seemed able to pluck interesting potential treatments out of the ether. Always thinking, always exploring, Cheney was in constant contact with people inside and outside the field. His protocols included things like undenatured whey (possible detoxifier and energy enhancer), Gookinaid (blood volume enhancer), Cheney’s “home-brew” (blood volume enhancer), rebound chairs, vertical hydrotherapy, human growth hormone, cell signaling factors, stem cells, artesunate, etc. He was the first, that I know of, to warn of the danger of dental cavitations. He may have been the first to notice missing fingerprints. He was, and remains, one of the few doctors to focus on detoxification.
Cheney very early glommed onto the importance of mast cell activation and used doxepin elixir to tamp down mast cell activity. Stating that he believed the brains in ME/CFS were so active as to put them close to seizure, Cheney mused that he wished he could put his patients into a short-term coma to slow their brain activity. (He was a big advocate of using Klonopin, doxepin elixir, and magnesium to slow things down and protect the brain). At one point, Cheney said he tired of chasing after pathogens and focused instead on improving immune health with Ampligen, Kutapressin, Isoprinosine, and other possibilities.
Not that helping people with ME/CFS was ever easy. He told me that it usually took him a year and a half to figure patients out. Superb at getting positive disability rulings for his patients, he once remarked he was much better at getting disability than curing ME/CFS.
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In 2003, Cheney shifted direction dramatically. After a heart transplant operation temporarily personally recapitulated for him many of the symptoms of ME/CFS, he came upon a small study by Arnold Peckerman titled “Abnormal impedance cardiography predicts symptom severity in chronic fatigue syndrome,” which suggested that a subset of ME/CFS patients had diastolic dysfunction.
Cheney called the Peckerman paper the “‘best, most important publication in the history of CFS.” (See my analysis of Cheney’s conception of that paper as well as an exhaustive (and exhausting) exploration of his cardiomyopathy ideas.) After he received a grant for an impedance cardiography machine, Cheney asserted that many people with ME/CFS had “idiopathic cardiomyopathy,” a diagnosis that did not get much agreement. He also used the term “heart failure” – a term with dire connotations which did not strictly fit his patients (but which Peckerman had used once as well).
Because the diastolic phase of the heart requires more energy than the pumping phase, Cheney believed that problems with energy production were preventing the left ventricles of ME/CFS patients’ hearts from expanding enough to draw normal amounts of blood into them. Cheney believed that the reduced activity of an antioxidant enzyme which also inhibited energy production prevented ME/CFS patients from fully entering into heart failure.
Using the impedance cardiography machine to assess treatment effectiveness, Cheney’s protocol shifted rather dramatically as he abjured some of the treatments he’d proposed before.
Cheney’s idea that an idiopathic cardiomyopathy was behind ME/CFS never seemed to take hold. His original conception of the cause of the “heart failure” in ME/CFS, which involved an infection in combination with a heavy metal such as mercury plus antioxidant issues, may, given what we’ve learned since then, to be wrong. He may have been on track in other ways, though.
In 2016, David Systrom’s finding of “inadequate ventricular filling” in patients with exercise intolerance seems (at least to me) to be analogous to the finding that so excited Cheney. Over the next five years, Systrom’s invasive exercise studies indicated that the reduced filling (preload) was caused by low blood flows into the heart. Systrom’s findings suggest that instead of heart problems, leaky blood vessels appear to be the culprit in a large subset of ME/CFS patients.
Cheney’s heart transplant in 2003 limited his work, and his impact on the community faded, but my understanding is that he continued to study and work with patients up until the end.
He certainly had his critics. For one, he was expensive – charging over $500/hour 15 years ago. While the tests done during the 2-day initial visits were, of course, expensive, Cheney’s high hourly rate plus his loquacious nature could and did send the bills flying.
Cheney co-authored about a dozen papers/studies on other aspects of ME/CFS until 1997. It’s not clear if he attempted to publish his findings or not, but his findings were never published in scientific journals, nor were his hypotheses ever subjected to the scrutiny of the scientific community. Nor, unfortunately, did he put his thoughts down in book form. As such, his reach has probably been more limited than it might have been.
While Cheney was a founding director of the IACFS/ME, he didn’t, to my knowledge, participate heavily in that organization over time or in federal efforts like CFSAC or the IOM report. Instead, he largely focused on his work and his patients.
A Three Decade-Plus Stand for People with ME/CFS
Time will tell whether Cheney’s unique ideas about this disease stand up or not. Whether he was right or wrong, whether his treatment ideas have stood up over time or not, Paul Cheney never relented in his commitment to his patients. Like Dan Peterson, his Incline Village partner, Cheney’s experiences during the Incline Village outbreak inspired him to dedicate his career to serving people with ME/CFS. Both doctors bucked their peers and courageously provided succor, relief, and validation to a much-neglected patient community when few others would.
It’s a shame that Dr. Cheney, in particular, with his curious and creative mind, didn’t get to live to see what the long-COVID research will unveil about the disease and the patients he devoted his career to.
Dr. Cheney was part of a pioneering and diverse group of doctors who fought the ignorance around them, experimented with new treatments, and consoled and validated their patients. We were lucky to have them.
About the Author: ProHealth is pleased to share information from Cort Johnson. Cort has had myalgic encephalomyelitis /chronic fatigue syndrome for over 30 years. The founder of Phoenix Rising and Health Rising, he has contributed hundreds of blogs on chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort’s and other bloggers’ work at Health Rising.