Obituaries
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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. |
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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 |
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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,”
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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 |
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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. |
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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. |
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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