[CFS-L] In Memoriam: Paul Cheney (2)

[Dr. Marc-Alexander Fluks]

Source: Health Rising
Date: June 22, 2021
Author: Cort Johnson
URL:
https://www.healthrising.org/blog/2021/06/22/a-colossus-in-the-me-cfs-field-passes-remembering-paul-cheney-md/
Ref: https://www.facebook.com/groups/320836646197710


A Colossus in the ME/CFS Field Passes:
Remembering Paul Cheney MD, Ph.D.
--------------------------------------

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
the1990s 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 1984-5 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 at some
point established a practice on an island off the North Carolina coast,
and later moved to Asheville, NC where he remained for the rest of his
life. Except for his work with Dr. Charles Lapp for three years
(1992-1995), he worked as a solo practitioner.


Creative Doctor

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.


Dramatic Shift

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 was open to
question. 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, seems likely, given
what we've learned since then, to be wrong as well, but he may have been
on track in other ways.

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 was caused by low blood flows into the heart. Instead of heart
problems, leaky blood vessels appear now 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.

While he was the co-author on about a dozen research studies, Cheney
never subjected his treatment approaches to clinical trials provided any
in-house analyses to the public. Most unfortunately, in my opinion,
Cheney never put his thoughts down in book form.

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

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
searching 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.

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(c) 2021 Health Rising

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -
Source: American ME and CFS Society
Date: June 2021
Author: Erica Verillo
URL: https://ammes.org/2021/06/18/in-memoriam-dr-paul-cheney/
Ref: https://www.facebook.com/groups/320836646197710


In Memoriam: Dr. Paul Cheney
----------------------------

I was deeply saddened to learn that Dr. Paul Cheney had passed away on
June 10th. Along with Dr. Dan Peterson, Dr. Cheney practiced in Incline
Village, Nevada during the outbreak of what appeared to be a new
disease. It had the hallmarks of a viral infection, but their patients
were not recovering. That disease would later be called 'Chronic Fatigue
Syndrome.'

Dr. Cheney's passing has personal significance for me, because he was
the doctor who diagnosed me in 1993. I had heard about him through the
leader of our support group in Austin, Texas, who generously allowed me
to listen to a tape she had made of her consult with him. I was
impressed with Dr. Cheney's wealth of knowledge, which stemmed not just
from his clinical practice, but from his research background in
immunology. He not only had an MD, but held a PhD in physics and had
been a research associate in the Division of Immunology at the CDC. He
had also served as Chief of Medicine at the USAF Hospital in Mt. Home,
Idaho for three years before going into private practice.

On the wall of Dr. Cheney's office was a map with pushpins indicating
where his patients came from. There were pushpins in every state and all
over the world. Over the course of his practice he saw thousands of
patients, whom he tested extensively for immune and metabolic
dysfunctions, cardiac function, co-infections (including Lyme disease),
indicators of viral reactivation, antigen sensitivity, and autoimmune
activity, among others. I don't think anyone understood ME/CFS as well
as he did. Dr. Cheney was our 'resident genius.'

Dr. Cheney spent four hours with me during our initial consult. He was
not just thorough, he was kind. When he pronounced me 'severely ill'
there was genuine concern in his eyes. He gave me a piece of advice that
I never forgot. 'You are in a leaky boat,' he said. 'How much can you
throw overboard?' Throwing things overboard has saved me on many
occasions.

The last time I saw Dr. Cheney was at the IACFS/ME Conference in San
Francisco in 2014. I gave him a big hug and introduced myself as a
former patient. 'I remember you,' he said. It had been 21 years.

RIP Dr. Cheney. The world is poorer without you in it.

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(c) 2021 AMMES