Obituaries
Dr Paul Cheney
(from Health Rising)
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.
(from Health Rising)
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.
Dr. Jay A. Goldstein
Dr. Jay Goldstein had passed away on March 4, 2021. Dr. Goldstein was a pioneer among ME/CFS researchers and clinicians. He rose to prominence in the 1990s through his clinical practice, and through the publication of several seminal works, chief among them: Betrayal by the Brain : The Neurologic Basis of Chronic Fatigue Syndrome, Fibromyalgia Syndrome, and Related Neural Network Disorders, Tuning the Brain : Principles and Practice of Neurosomatic Medicine, and Chronic Fatigue Syndromes : The Limbic Hypothesis. In addition to his books, Dr. Goldstein was also one of the editors, along with Dr. Byron Hyde, of The Clinical and Scientific Basis of Myalgic Encephalomyelitis–Chronic Fatigue Syndrome, a collection of papers on clinical practice and research that remains unsurpassed in both depth and scope.
Dr. Goldstein believed that ME/CFS was the result of an insult to the limbic system, located deep within the brain. The limbic system is involved with memory, emotion, and regulation of the autonomic nervous system. This last function is of critical importance to maintaining homeostasis in the body, as the autonomic nervous system regulates appetite, body temperature, blood pressure, blood sugar, sleep, wakefulness, heart rate, digestion – in short, nearly every physiological function necessary for maintaining life.
Dr. Goldstein’s theory, as laid out in his book, Betrayal by the Brain, was that ME/CFS is essentially a communication problem between the limbic system and the rest of the nervous system. His “limbic hypothesis” essentially states that no matter what the underlying cause of ME/CFS, the result is an injury to the limbic system, which subsequently causes widespread neuroimmune dysfunction. He identified ME/CFS as a “neurosomatic” illness, that is, a disorder of central nervous system processing. Dr. Goldstein based his theory on what he knew of the brain, which was substantial, as well as what he had observed of his patients’ reactions to various psychotropic medications. Recent studies have shown that in his approach Dr. Goldstein was far ahead of his time.
Dr. Goldstein will be sorely missed, not just for his tremendous insights but for his compassion and commitment to his patients. There will never be another like him. RIP Dr. Jay A. Goldstein.
Dr. Jay Goldstein had passed away on March 4, 2021. Dr. Goldstein was a pioneer among ME/CFS researchers and clinicians. He rose to prominence in the 1990s through his clinical practice, and through the publication of several seminal works, chief among them: Betrayal by the Brain : The Neurologic Basis of Chronic Fatigue Syndrome, Fibromyalgia Syndrome, and Related Neural Network Disorders, Tuning the Brain : Principles and Practice of Neurosomatic Medicine, and Chronic Fatigue Syndromes : The Limbic Hypothesis. In addition to his books, Dr. Goldstein was also one of the editors, along with Dr. Byron Hyde, of The Clinical and Scientific Basis of Myalgic Encephalomyelitis–Chronic Fatigue Syndrome, a collection of papers on clinical practice and research that remains unsurpassed in both depth and scope.
Dr. Goldstein believed that ME/CFS was the result of an insult to the limbic system, located deep within the brain. The limbic system is involved with memory, emotion, and regulation of the autonomic nervous system. This last function is of critical importance to maintaining homeostasis in the body, as the autonomic nervous system regulates appetite, body temperature, blood pressure, blood sugar, sleep, wakefulness, heart rate, digestion – in short, nearly every physiological function necessary for maintaining life.
Dr. Goldstein’s theory, as laid out in his book, Betrayal by the Brain, was that ME/CFS is essentially a communication problem between the limbic system and the rest of the nervous system. His “limbic hypothesis” essentially states that no matter what the underlying cause of ME/CFS, the result is an injury to the limbic system, which subsequently causes widespread neuroimmune dysfunction. He identified ME/CFS as a “neurosomatic” illness, that is, a disorder of central nervous system processing. Dr. Goldstein based his theory on what he knew of the brain, which was substantial, as well as what he had observed of his patients’ reactions to various psychotropic medications. Recent studies have shown that in his approach Dr. Goldstein was far ahead of his time.
Dr. Goldstein will be sorely missed, not just for his tremendous insights but for his compassion and commitment to his patients. There will never be another like him. RIP Dr. Jay A. Goldstein.
In Memoriam - Ian Gibson
Dr Ian Gibson
"When a great man dies, for years the light he leaves behind him, lies on the paths of men"
- Henry Wadsworth Longfellow
Very sad news has come with the news of the passing of Dr Ian Gibson.
Ian was an advisor, a scientist, a supporter and very special friend of Invest in ME Research and a defender of all people with ME and their carers.
Ian spoke at our very first international conferences in London when he was a Member of Parliament - and subsequently chaired all of the conferences when he retired.
His contributions to these events and to the international research Colloquiums were apparent to all.
He accompanied us to meetings when the charity decided to focus on establishing a foundation of high-quality research into ME - a centre of excellence for ME.
He was a voice for science, for research, for people in need and for those who would otherwise be unheard.
He was part of the heart of the charity and so influential in changing things for ME.Our condolences go to his wife Liz and his daughters.
We have lost a great friend.
Ian will be greatly missed by so many people around the world.
https://www.investinme.org/landerigibson.shtml
Dr Ian Gibson
"When a great man dies, for years the light he leaves behind him, lies on the paths of men"
- Henry Wadsworth Longfellow
Very sad news has come with the news of the passing of Dr Ian Gibson.
Ian was an advisor, a scientist, a supporter and very special friend of Invest in ME Research and a defender of all people with ME and their carers.
Ian spoke at our very first international conferences in London when he was a Member of Parliament - and subsequently chaired all of the conferences when he retired.
His contributions to these events and to the international research Colloquiums were apparent to all.
He accompanied us to meetings when the charity decided to focus on establishing a foundation of high-quality research into ME - a centre of excellence for ME.
He was a voice for science, for research, for people in need and for those who would otherwise be unheard.
He was part of the heart of the charity and so influential in changing things for ME.Our condolences go to his wife Liz and his daughters.
We have lost a great friend.
Ian will be greatly missed by so many people around the world.
https://www.investinme.org/landerigibson.shtml
From American ME Society: Marcie Zinn
We are deeply saddened by the sudden death of Marcie Zinn, PhD, who was a dedicated researcher, advocate and person with myalgic encephalomyelitis (ME).
Marcie died of sudden heart failure on Dec. 28, 2019.
Marcie and her husband, Mark, founded the Neurocognitive Research Institute (NCRI), a non-profit that specializes in 3D-mapping of the brain to assess brain activity and linkage between brain regions. The neurocognitive assessments they conduct are being used for ME research, and to help people with ME win disability claims.
Marcie was diagnosed with herpes viral encephalitis in 2009, which developed into ME, and her interest turned toward using her extensive brain mapping (qEEG / LORETA imaging ) and neuroscience skills for research into ME.
Leonard Jason, PhD, professor at DePaul University, who worked with Marcie on several important publications on ME, said Marcie’s presence in the field will be missed.
Dr. Jason wrote: “She produced excellent qEEG research that provided a better understanding of how disease states cause disruption to dynamic homeostatic processes, compromising feedback and regulatory mechanisms necessary for properly maintaining the central nervous system and the autonomic nervous system,”
We are deeply saddened by the sudden death of Marcie Zinn, PhD, who was a dedicated researcher, advocate and person with myalgic encephalomyelitis (ME).
Marcie died of sudden heart failure on Dec. 28, 2019.
Marcie and her husband, Mark, founded the Neurocognitive Research Institute (NCRI), a non-profit that specializes in 3D-mapping of the brain to assess brain activity and linkage between brain regions. The neurocognitive assessments they conduct are being used for ME research, and to help people with ME win disability claims.
Marcie was diagnosed with herpes viral encephalitis in 2009, which developed into ME, and her interest turned toward using her extensive brain mapping (qEEG / LORETA imaging ) and neuroscience skills for research into ME.
Leonard Jason, PhD, professor at DePaul University, who worked with Marcie on several important publications on ME, said Marcie’s presence in the field will be missed.
Dr. Jason wrote: “She produced excellent qEEG research that provided a better understanding of how disease states cause disruption to dynamic homeostatic processes, compromising feedback and regulatory mechanisms necessary for properly maintaining the central nervous system and the autonomic nervous system,”
A Tribute to Dr. Bruce Carruthers
It is with sincere sadness, I learned of Dr. Bruce Carruthers recent passing. Bruce was a brilliant man, who was so loved by all who knew him. As a Physician, Friend and Colleague I shared in many memories with him over a thirty-year history. There was no finer, caring or compassionate Physician, and those who shared their stories with him, found a kind and gentle listener; who not only believed them, but did everything he could to help them! This included coming out of retirement more than once to continue to treat and support his patients!
His legacy leaves many years of dedicated research, medical care, published writings, teaching both medical and yoga students, and being a stellar member of the human race! His presence may have left us, but his work lives on. I know he takes with him the love, appreciation and respect of all who know just how very special a man he was!
My Condolences to his family, his friends and his Patients; for we know how very fortunate we were to have known this great and wise man, and have him in our lives! RIP Bruce. You Will Never Be Forgotten!
Sherri Todd
BC Director - The National ME/FM Action Network
July 31, 2017 | Coquitlam, BC
It is with sincere sadness, I learned of Dr. Bruce Carruthers recent passing. Bruce was a brilliant man, who was so loved by all who knew him. As a Physician, Friend and Colleague I shared in many memories with him over a thirty-year history. There was no finer, caring or compassionate Physician, and those who shared their stories with him, found a kind and gentle listener; who not only believed them, but did everything he could to help them! This included coming out of retirement more than once to continue to treat and support his patients!
His legacy leaves many years of dedicated research, medical care, published writings, teaching both medical and yoga students, and being a stellar member of the human race! His presence may have left us, but his work lives on. I know he takes with him the love, appreciation and respect of all who know just how very special a man he was!
My Condolences to his family, his friends and his Patients; for we know how very fortunate we were to have known this great and wise man, and have him in our lives! RIP Bruce. You Will Never Be Forgotten!
Sherri Todd
BC Director - The National ME/FM Action Network
July 31, 2017 | Coquitlam, BC
Dr Gordon Parish – an appreciation
Posted on 15 Sep 2017
Dr J. Gordon Parish, left, and Dr A. Melvin Ramsay, right. Chapter 16 of “The Clinical and Scientific Basis of ME/CFS”, Nightingale Research Foundation, 1992”
It is with great sadness that we learned of the death of Dr J. Gordon Parish, aged 92, on September 13th at his home in the village of Stanley in rural Perthshire. Dr Parish was one of the group of trustees who founded ME Research UK (originally called MERGE) in 2000, becoming a valued patron thereafter. Without his intellectual and financial support, particularly in the very early days, the charity would not have survived and prospered. He was a great advocate of the need to recognize ME as a distinct clinical entity, and through the years he kept a close interest in the scientific projects funded by ME Research UK, particularly those on muscle and brain which he saw as key to understanding the biology of the disease. He also wrote the occasional article for our magazine, Breakthrough, including “Myalgic encephalomyelitis – a muscle/brain disorder”, the magazine summary of which is given below.
After his war-time medical training, Dr Parish took up posts in the North of England, and it was while working in Durham in the mid 1950s that he contracted ME, recovering thereafter but suffering recurrences of the original illness at various times over the next 60 years. Afterwards, the family moved to Canada but returned to England where Dr Parish ended his working life as a Consultant in Rehabilitation Medicine at Mary’s Hospital in Colchester. It was there that he saw many patients with an ME-like illness similar to his own, and Dr Parish became dedicated to their care and convinced of the need for scientific investigation of the disease. It was his firm belief that ME had an infectious cause, probably viral, and he devoted much of his spare time to writing scientific letters and articles, and to identifying outbreaks of the illness as they appeared in the scientific literature. By the end of the 1970s, he had identified 47 possible epidemics of ME across the world, from Los Angeles (1934) to Southampton, England (1979). Over time, he not only tabulated these epidemics (table available on the ME Research UK website) but brought together an extensive archive of the literature on each, which he made available to researchers. A summary of the information he collected appears as Chapters 1 and 16 of “The Clinical and Scientific Basis of ME/CFS” published by the Nightingale Research Foundation in 1992 (free download available).
Dr Parish was the last survivor of a handful of British medical doctors who diagnosed and treated people with ME, and who became leading advocates of the need to recognise, diagnose, investigate and treat the disease (notable others include Dr A. Melvin Ramsay, Dr John Richardson and Dr Betty Dowsett). Through their valiant efforts, extending from the 1950s to the present day, the existence of ME and its effects on the lives of patients and their families was not lost to history. As Dr Vance Spence, Chairman of ME Research UK, says: “The ME world owes an enormous debt to their quiet persistence, their professional approach and their dedication to keeping the flame alive.”
Myalgic encephalomyelitis – a muscle/brain disorderBy Dr J. Gordon Parish, Patron of ME Research UK
Epidemics of myalgic encephalomyelitis were reviewed in a classic scientific paper by Acheson in 1959, and subsequent investigations have established that between 1934–79 there were at least forty-seven outbreaks of epidemic proportions of a similar illness, all well-documented, distributed geographically, for example in North America and the UK.
Many of the findings described by Acheson are very much relevant to our understanding of ME today. The disease was initially thought to resemble poliomyelitis until distinguishing features occurred; however, no patient developed the paralysis and muscle wasting seen in poliomyelitis which is a disease of the spinal cord. In essence, he described as a systemic infectious illness, characterised by marked muscle fatigability (not just weakness); muscle pain, tenderness and swelling; and variable involvement of the central nervous system. Similarly, Henderson and Shelokov in their review in 1959, found that the affected muscles were tender either diffusely or in focal discrete areas, which felt “oedematous, doughy or rubbery in consistence.” They also mentioned the association of behavioural disturbances with brain cell disorders such as cranial nerve palsies and hemiparesis with extensor plantar response an occasional finding in some epidemics, an association clearly illustrated by Melvin Ramsay in a report of serious of sporadic cases in North West London in 1955/6.
ME Research UK has funded research which has revealed abnormalities in the function of blood vessels and blood cells. However, abnormalities of blood vessels have also been described in the papers describing the epidemics. Infectious material was transferred from patients to monkeys during an epidemic in Adelaide, Australia in 1949-1950. The only abnormalities discovered at autopsy were minute red spots along the course of the sciatic nerves, found to be localised collections of inflammatory cells which had also infiltrated the area where the nerve roots come out of the spinal cord. Again, during the North of England epidemic in 1955 Andrew Wallis described findings in a patient in her fifties, who developed the characteristic febrile illness leaving her debilitated and emotional. During the next fifteen months she continued to run a low grade fever with continued mental deterioration before she died. The post-mortem revealed numerous small haemorrhages around blood vessels in the cerebral cortex extending into the mid-brain, which were considered to be the cause of her death.
Myalgic encephalomyelitis is a muscle/brain disorder, which occurs as clusters of cases in families, in institutions such as hospitals or schools, and in specific areas, but also sporadically. It is an infectious disease with an incubation period of 5 to 8 days. Acheson in 1959 used the expression “in a greater or lesser degree” to describe “the symptoms and signs of damage to the brain and spinal cord” in this disease. This expression can also be applied to the febrile illness and muscle involvement. Many patients recover, while others have relapses with reactivation of features of the initial illness and further damage to new areas of the brain or muscles, and in extreme cases deterioration may lead to death. After activity the recovery of muscle power is prolonged to an extent not recorded in any other disease. The association between these findings in muscle and vascular abnormalities in blood vessels and blood components needs to be explored, and for research purposes patients with these physical signs should not be coupled with patients, whose main illness is chronic fatigue on exertion and who do not have these signs.
Posted on 15 Sep 2017
Dr J. Gordon Parish, left, and Dr A. Melvin Ramsay, right. Chapter 16 of “The Clinical and Scientific Basis of ME/CFS”, Nightingale Research Foundation, 1992”
It is with great sadness that we learned of the death of Dr J. Gordon Parish, aged 92, on September 13th at his home in the village of Stanley in rural Perthshire. Dr Parish was one of the group of trustees who founded ME Research UK (originally called MERGE) in 2000, becoming a valued patron thereafter. Without his intellectual and financial support, particularly in the very early days, the charity would not have survived and prospered. He was a great advocate of the need to recognize ME as a distinct clinical entity, and through the years he kept a close interest in the scientific projects funded by ME Research UK, particularly those on muscle and brain which he saw as key to understanding the biology of the disease. He also wrote the occasional article for our magazine, Breakthrough, including “Myalgic encephalomyelitis – a muscle/brain disorder”, the magazine summary of which is given below.
After his war-time medical training, Dr Parish took up posts in the North of England, and it was while working in Durham in the mid 1950s that he contracted ME, recovering thereafter but suffering recurrences of the original illness at various times over the next 60 years. Afterwards, the family moved to Canada but returned to England where Dr Parish ended his working life as a Consultant in Rehabilitation Medicine at Mary’s Hospital in Colchester. It was there that he saw many patients with an ME-like illness similar to his own, and Dr Parish became dedicated to their care and convinced of the need for scientific investigation of the disease. It was his firm belief that ME had an infectious cause, probably viral, and he devoted much of his spare time to writing scientific letters and articles, and to identifying outbreaks of the illness as they appeared in the scientific literature. By the end of the 1970s, he had identified 47 possible epidemics of ME across the world, from Los Angeles (1934) to Southampton, England (1979). Over time, he not only tabulated these epidemics (table available on the ME Research UK website) but brought together an extensive archive of the literature on each, which he made available to researchers. A summary of the information he collected appears as Chapters 1 and 16 of “The Clinical and Scientific Basis of ME/CFS” published by the Nightingale Research Foundation in 1992 (free download available).
Dr Parish was the last survivor of a handful of British medical doctors who diagnosed and treated people with ME, and who became leading advocates of the need to recognise, diagnose, investigate and treat the disease (notable others include Dr A. Melvin Ramsay, Dr John Richardson and Dr Betty Dowsett). Through their valiant efforts, extending from the 1950s to the present day, the existence of ME and its effects on the lives of patients and their families was not lost to history. As Dr Vance Spence, Chairman of ME Research UK, says: “The ME world owes an enormous debt to their quiet persistence, their professional approach and their dedication to keeping the flame alive.”
Myalgic encephalomyelitis – a muscle/brain disorderBy Dr J. Gordon Parish, Patron of ME Research UK
Epidemics of myalgic encephalomyelitis were reviewed in a classic scientific paper by Acheson in 1959, and subsequent investigations have established that between 1934–79 there were at least forty-seven outbreaks of epidemic proportions of a similar illness, all well-documented, distributed geographically, for example in North America and the UK.
Many of the findings described by Acheson are very much relevant to our understanding of ME today. The disease was initially thought to resemble poliomyelitis until distinguishing features occurred; however, no patient developed the paralysis and muscle wasting seen in poliomyelitis which is a disease of the spinal cord. In essence, he described as a systemic infectious illness, characterised by marked muscle fatigability (not just weakness); muscle pain, tenderness and swelling; and variable involvement of the central nervous system. Similarly, Henderson and Shelokov in their review in 1959, found that the affected muscles were tender either diffusely or in focal discrete areas, which felt “oedematous, doughy or rubbery in consistence.” They also mentioned the association of behavioural disturbances with brain cell disorders such as cranial nerve palsies and hemiparesis with extensor plantar response an occasional finding in some epidemics, an association clearly illustrated by Melvin Ramsay in a report of serious of sporadic cases in North West London in 1955/6.
ME Research UK has funded research which has revealed abnormalities in the function of blood vessels and blood cells. However, abnormalities of blood vessels have also been described in the papers describing the epidemics. Infectious material was transferred from patients to monkeys during an epidemic in Adelaide, Australia in 1949-1950. The only abnormalities discovered at autopsy were minute red spots along the course of the sciatic nerves, found to be localised collections of inflammatory cells which had also infiltrated the area where the nerve roots come out of the spinal cord. Again, during the North of England epidemic in 1955 Andrew Wallis described findings in a patient in her fifties, who developed the characteristic febrile illness leaving her debilitated and emotional. During the next fifteen months she continued to run a low grade fever with continued mental deterioration before she died. The post-mortem revealed numerous small haemorrhages around blood vessels in the cerebral cortex extending into the mid-brain, which were considered to be the cause of her death.
Myalgic encephalomyelitis is a muscle/brain disorder, which occurs as clusters of cases in families, in institutions such as hospitals or schools, and in specific areas, but also sporadically. It is an infectious disease with an incubation period of 5 to 8 days. Acheson in 1959 used the expression “in a greater or lesser degree” to describe “the symptoms and signs of damage to the brain and spinal cord” in this disease. This expression can also be applied to the febrile illness and muscle involvement. Many patients recover, while others have relapses with reactivation of features of the initial illness and further damage to new areas of the brain or muscles, and in extreme cases deterioration may lead to death. After activity the recovery of muscle power is prolonged to an extent not recorded in any other disease. The association between these findings in muscle and vascular abnormalities in blood vessels and blood components needs to be explored, and for research purposes patients with these physical signs should not be coupled with patients, whose main illness is chronic fatigue on exertion and who do not have these signs.
In Memory of Dr Anne Macintyre: ‘An extremely kind and compassionate doctor’. | 26 November 2018
Dr Charles Shepherd, Hon. Medical Adviser, ME Association.
We are very sorry to have to report the death of Dr Anne Macintyre – a doctor with a longstanding personal and professional involvement with all aspects of M.E.
Unfortunately, in addition to having the disease herself, Anne had other serious health problems and had been in poor health for quite some time.
She died peacefully on Saturday November 24th at her home in Tiverton in Devon.
A friend and colleague
Dr Anne Macintyre.
Anne will always be remembered as an extremely kind and compassionate doctor who helped large numbers of people with M.E. over many years.
She helped them obtain a diagnosis, to get appropriate management advice and she provided support when they were battling with the DWP over benefit entitlement.
She will also be remembered for her book ‘M.E. A Practical Guide’ which was extremely well received and is still regarded by many as being one of the best.
Anne was a medical adviser to the ME Association for many years and conscientiously carried out this role until she was unable to continue because of ill health.
At this point she became a Patron of the ME Association.
Anne will be very sadly missed as both a friend and colleague.
Dr Charles Shepherd, Hon. Medical Adviser, ME Association.
We are very sorry to have to report the death of Dr Anne Macintyre – a doctor with a longstanding personal and professional involvement with all aspects of M.E.
Unfortunately, in addition to having the disease herself, Anne had other serious health problems and had been in poor health for quite some time.
She died peacefully on Saturday November 24th at her home in Tiverton in Devon.
A friend and colleague
Dr Anne Macintyre.
Anne will always be remembered as an extremely kind and compassionate doctor who helped large numbers of people with M.E. over many years.
She helped them obtain a diagnosis, to get appropriate management advice and she provided support when they were battling with the DWP over benefit entitlement.
She will also be remembered for her book ‘M.E. A Practical Guide’ which was extremely well received and is still regarded by many as being one of the best.
Anne was a medical adviser to the ME Association for many years and conscientiously carried out this role until she was unable to continue because of ill health.
At this point she became a Patron of the ME Association.
Anne will be very sadly missed as both a friend and colleague.
Prof Jonas Blomberg
Tribute by ME Research UK
News has been received of the sudden death of Prof Jonas Blomberg, Professor Emeritus at the Department of Medical Sciences, Clinical Microbiology, Uppsala University, Sweden. Prof Blomberg was an active researcher in the field of ME/CFS and formerly held a number of grant awards from ME Research UK.
ME Research UK (with the Irish ME Trust) in response to a study which 'discovered' a potential retroviral link to ME/CF, quickly actioned funding to Prof Blomberg and colleagues to test for the presence of XMRV in Swedish ME/CFS patients to see if the results could be replicated - they could not. (https://bit.ly/2tc3If3)
More recently, Prof Blomberg's team published a report on their research into evidence of persistent or past infection in people with ME/CFS and, in particular, for certain 'stress proteins' (https://bit.ly/2HWu3b9) in an ME Research UK funded study.
Our thoughts are with Prof Blomberg's family and friends at this difficult time.
Tribute from Ron Davis
I was very saddened today to learn of the sudden passing of my colleague Jonas Blomberg. I send my sincere condolences to his family and friends.
I met Jonas at the Invest in ME conference in London. Every year we had a meal together in which we discussed the state of ME/CFS research, what needed to be done, and how we might be able to collaborate. It was clear that he really wanted to make a difference for ME/CFS patients.
Jonas did excellent work on autoimmunity and shared his results with me and our Stanford ME/CFS Collaborative Research Center Working Group. I was so pleased that he was able to attend our scientific meeting last September. He gave a well-received presentation and his contributions added significantly to our scientific discussion. We planned to collaborate further on more detailed analysis of autoimmune aspects of ME/CFS.
He will be sorely missed!
Ron Davis, PhD
Director, Stanford Genome Technology Center
Director, CFS Research Center at Stanford
Director, OMF Scientific Advisory Board
Tribute by ME Research UK
News has been received of the sudden death of Prof Jonas Blomberg, Professor Emeritus at the Department of Medical Sciences, Clinical Microbiology, Uppsala University, Sweden. Prof Blomberg was an active researcher in the field of ME/CFS and formerly held a number of grant awards from ME Research UK.
ME Research UK (with the Irish ME Trust) in response to a study which 'discovered' a potential retroviral link to ME/CF, quickly actioned funding to Prof Blomberg and colleagues to test for the presence of XMRV in Swedish ME/CFS patients to see if the results could be replicated - they could not. (https://bit.ly/2tc3If3)
More recently, Prof Blomberg's team published a report on their research into evidence of persistent or past infection in people with ME/CFS and, in particular, for certain 'stress proteins' (https://bit.ly/2HWu3b9) in an ME Research UK funded study.
Our thoughts are with Prof Blomberg's family and friends at this difficult time.
Tribute from Ron Davis
I was very saddened today to learn of the sudden passing of my colleague Jonas Blomberg. I send my sincere condolences to his family and friends.
I met Jonas at the Invest in ME conference in London. Every year we had a meal together in which we discussed the state of ME/CFS research, what needed to be done, and how we might be able to collaborate. It was clear that he really wanted to make a difference for ME/CFS patients.
Jonas did excellent work on autoimmunity and shared his results with me and our Stanford ME/CFS Collaborative Research Center Working Group. I was so pleased that he was able to attend our scientific meeting last September. He gave a well-received presentation and his contributions added significantly to our scientific discussion. We planned to collaborate further on more detailed analysis of autoimmune aspects of ME/CFS.
He will be sorely missed!
Ron Davis, PhD
Director, Stanford Genome Technology Center
Director, CFS Research Center at Stanford
Director, OMF Scientific Advisory Board