I established the COVID-19 Long-haul Foundation in response to a personal medical experience that changed my life and exposed how much remained unknown about persistent illness following COVID-19.<\/p>\n\n\n\n
My experience began in January 2020, before COVID-19 was widely recognized. What initially appeared to be an acute respiratory illness was followed, after a period of apparent recovery, by a succession of serious and often bewildering medical problems.<\/p>\n\n\n\n
As my condition evolved, I encountered a recurring challenge: individual symptoms and organ-system problems were being evaluated separately, while the possibility that they might be connected was much harder to investigate. The experience left me convinced that patients with persistent, multisystem illness needed better access to medical information, more coordinated investigation, and sustained research into the underlying causes of their conditions.<\/p>\n\n\n\n
The Foundation grew out of that conviction.<\/p>\n\n\n\n
My professional background includes diagnostic medicine, clinical bioinformatics, epidemiology, and the application of analytical methods to medical problems. My academic and professional work has included the use of artificial intelligence in the diagnosis and treatment of disease. I was also honored with Columbia University’s Medal of Distinction for contributions involving the application of artificial intelligence to medicine.<\/p>\n\n\n\n
These disciplines share a common objective: to use evidence, data, and systematic analysis to understand complex problems.<\/p>\n\n\n\n
When I became ill, I found myself confronting precisely the sort of problem that demands an integrated approach. Symptoms were appearing across multiple systems, yet the relationships among them were difficult to establish. The experience reinforced my belief that medical research must look beyond individual diagnoses when the possibility of a broader, interconnected illness warrants investigation.<\/p>\n\n\n\n
On January 7, 2020, a patient under my care died following a brief, unusual pneumonic illness.<\/p>\n\n\n\n
Eight days later, I developed what appeared to be a similar respiratory condition. I treated the illness with steroids, antibiotics, oxygen, and antihistamines. Within approximately ten days, my condition improved, although some chest congestion and coughing persisted.<\/p>\n\n\n\n
By early March, I believed I had returned to normal health. At that time, the world was only beginning to recognize the emerging threat of a new coronavirus.<\/p>\n\n\n\n
In retrospect, I came to suspect that my initial illness had been COVID-19. However, without a contemporaneous confirmatory test, that early infection cannot be established definitively from the history alone.<\/p>\n\n\n\n
What followed was far more consequential than the initial respiratory illness.<\/p>\n\n\n\n
On March 23, 2020, I awoke during the night with severe cramping in my right leg. I initially thought I was experiencing an ordinary muscle spasm, took Advil, and returned to sleep.<\/p>\n\n\n\n
The following morning, I found that my leg had become deeply discolored from the hip to the foot, resembling the color of an eggplant.<\/p>\n\n\n\n
This alarming episode marked the beginning of a prolonged period of medical uncertainty. Over the ensuing months, additional symptoms appeared, affecting different aspects of my health and daily functioning.<\/p>\n\n\n\n
My experiences eventually included disturbances of taste, smell, hearing, and vision; cognitive difficulties commonly described as brain fog; dizziness; skin changes and bleeding; and other symptoms that required repeated medical evaluation.<\/p>\n\n\n\n
During the summer of 2020, dizziness and cognitive difficulties contributed to falls and emergency department visits. Other problems emerged, including autonomic symptoms, cardiovascular concerns, abnormal blood-pressure patterns, and gastrointestinal complications.<\/p>\n\n\n\n
I came to understand firsthand how difficult it can be to navigate a condition that evolves over time and does not fit neatly into a single specialty.<\/p>\n\n\n\n
In September 2020, I required emergency hospitalization for a perforation of the sigmoid colon and a large abscess in the left upper abdomen.<\/p>\n\n\n\n
Approximately six weeks later, I experienced another life-threatening emergency involving mesenteric arterial bleeding. According to my recollection, approximately 30 units of blood were administered before the bleeding vessel could be embolized and my condition stabilized. A prolonged period of rehabilitation followed.<\/p>\n\n\n\n
Further medical problems accumulated over the following years. My medical history included sudden vision loss associated with cataracts, followed by bilateral cataract surgery, as well as sigmoidectomy, appendectomy, fistula surgery, seroma repair, and myringotomy.<\/p>\n\n\n\n
In March 2023, I sustained a complete tear of my left rotator cuff after a fall that occurred while I was experiencing cognitive impairment.<\/p>\n\n\n\n
These events required extensive medical attention and imposed a substantial burden on my physical functioning, independence, and quality of life.<\/p>\n\n\n\n
I consulted numerous specialists, underwent extensive imaging and diagnostic testing, and accumulated a medical record spanning multiple organ systems. Yet identifying and treating individual problems did not necessarily explain the broader pattern of illness I was experiencing.<\/p>\n\n\n\n
I began to ask a question that became central to the Foundation’s mission:<\/p>\n\n\n\n
What can we learn when we examine the entire clinical picture rather than treating every manifestation as an isolated problem?<\/strong><\/p>\n\n\n\n My experience illustrates a challenge that many people with persistent post-COVID illness describe: a complicated collection of symptoms may require care from several specialties, while the connections among those symptoms remain uncertain.<\/p>\n\n\n\n This does not mean that every symptom has a single cause or that all abnormalities necessarily arise from COVID-19. It means that the possibility of shared mechanisms deserves careful investigation when the clinical evidence warrants it.<\/p>\n\n\n\n Long COVID is now recognized as a heterogeneous condition that can affect multiple organ systems. Research is investigating possible contributions from viral persistence, immune dysregulation, inflammation, autonomic dysfunction, vascular abnormalities, metabolic changes, and other processes.<\/p>\n\n\n\n The relative importance of these mechanisms may differ among patients. Some hypotheses have substantial supporting evidence; others remain preliminary or disputed. A central task for future research is to determine which mechanisms are relevant to which patients and whether identifying them can improve diagnosis and treatment.<\/p>\n\n\n\n My own experience made these questions more than academic. They became a daily concern.<\/p>\n\n\n\n The COVID-19 Long-haul Foundation was established to help address the gap between the growing body of medical literature and the practical difficulty of finding, understanding, and applying that information.<\/p>\n\n\n\n I wanted to create a resource through which patients, caregivers, clinicians, researchers, and interested members of the public could explore the scientific literature and follow developments in this rapidly evolving field.<\/p>\n\n\n\n Over time, the Foundation’s educational collection expanded to more than 3,000 articles and related publications covering Long COVID, SARS-CoV-2 biology, immunology, neurological and multisystem illness, treatments, epidemiology, vaccine safety, and public health.<\/p>\n\n\n\n The library is intended to do more than collect information. It provides a foundation for examining research questions, comparing findings, identifying limitations, and recognizing where additional investigation is needed.<\/p>\n\n\n\n The Foundation’s broader research interests include the analysis of available epidemiological evidence, the development of original analytical reports where appropriate data and methods permit, and the identification of priorities for future research.<\/p>\n\n\n\n The distinction between collecting published studies and producing original research is important. A library helps readers access existing knowledge; original research seeks to generate additional knowledge. Both can contribute to scientific progress, but completed analyses and proposed projects must be clearly distinguished.<\/p>\n\n\n\n The Foundation also addresses health problems reported following COVID-19 vaccination.<\/p>\n\n\n\n Some people have reported persistent or serious symptoms that they believe began after vaccination. Their experiences raise clinical questions that deserve appropriate evaluation, particularly when symptoms are prolonged, disabling, or unexplained.<\/p>\n\n\n\n The scientific challenge is to determine which reported events are causally associated with vaccination, how frequently recognized complications occur, which individuals may be at increased risk, and what approaches to diagnosis and treatment may be beneficial.<\/p>\n\n\n\n A temporal relationship alone does not establish causation. Reliable conclusions require appropriate clinical assessment and epidemiological evidence, including consideration of alternative explanations and comparison with expected background rates.<\/p>\n\n\n\n I believe that careful investigation of potential adverse effects is an important component of vaccine safety. Such investigation must be rigorous, transparent, and responsive to new evidence.<\/p>\n\n\n\n The Foundation therefore maintains educational resources concerning vaccine safety, adverse-event reporting, recognized complications, and unresolved research questions. This work complements our focus on persistent illness following infection while recognizing that the two areas require careful scientific distinction.<\/p>\n\n\n\n My experience has reinforced the importance of looking beyond individual case histories to the broader evidence.<\/p>\n\n\n\n Future research should seek to answer several fundamental questions:<\/p>\n\n\n\n Answering these questions will require appropriately designed studies, reliable data, collaboration among researchers, and continued attention to the experiences of affected patients.<\/p>\n\n\n\n The Foundation seeks to contribute by organizing evidence, developing research resources, examining unresolved questions, and encouraging further investigation.<\/p>\n\n\n\n My journey with persistent illness has been difficult, but it has also shaped the purpose of the organization I founded.<\/p>\n\n\n\n I know what it means to face a complicated medical history, seek explanations for symptoms that cross traditional specialty boundaries, and confront uncertainty about what the future holds.<\/p>\n\n\n\n I also recognize that one person’s experience, however serious, cannot establish the causes of a disease or substitute for systematic research. Personal experience can, however, help identify questions that deserve investigation.<\/p>\n\n\n\n That is the principle behind the COVID-19 Long-haul Foundation.<\/p>\n\n\n\n Our work is grounded in the conviction that patients deserve to be heard, medical questions deserve rigorous examination, and scientific understanding must continue to evolve as new evidence becomes available.<\/p>\n\n\n\n The Foundation will continue to support medical education, maintain its research library, examine opportunities for original analysis, and identify priorities for future investigation into Long COVID and potential COVID-19 vaccine injuries.<\/p>\n\n\n\n The ultimate objective is straightforward: to help turn uncertainty into better questions, better evidence, and, eventually, better answers for the people who need them.<\/p>\n\n\n\n John Murphy<\/strong>, CEO The COVID-19 Long haul Foundation<\/p>\n\n\n\n Founder and CEO Advancing knowledge. Supporting patients. Encouraging the research needed for better answers.<\/em><\/p>\n","protected":false},"excerpt":{"rendered":" Why I Founded the COVID-19 Long-haul Foundation I established the COVID-19 Long-haul Foundation in response to a personal medical experience that changed my life and exposed how much remained unknown […]<\/p>\n","protected":false},"author":2,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"class_list":["post-6088","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/cov19longhaulfoundation.org\/index.php?rest_route=\/wp\/v2\/pages\/6088","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/cov19longhaulfoundation.org\/index.php?rest_route=\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/cov19longhaulfoundation.org\/index.php?rest_route=\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/cov19longhaulfoundation.org\/index.php?rest_route=\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/cov19longhaulfoundation.org\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=6088"}],"version-history":[{"count":4,"href":"https:\/\/cov19longhaulfoundation.org\/index.php?rest_route=\/wp\/v2\/pages\/6088\/revisions"}],"predecessor-version":[{"id":17093,"href":"https:\/\/cov19longhaulfoundation.org\/index.php?rest_route=\/wp\/v2\/pages\/6088\/revisions\/17093"}],"wp:attachment":[{"href":"https:\/\/cov19longhaulfoundation.org\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=6088"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}The Challenge of Multisystem Illness<\/h5>\n\n\n\n
From Personal Experience to a Foundation<\/h5>\n\n\n\n
An Additional Focus: Potential COVID-19 Vaccine Injuries<\/h5>\n\n\n\n
The Research Questions That Matter Next<\/h5>\n\n\n\n
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A Continuing Mission<\/h5>\n\n\n\n
The COVID-19 Long-haul Foundation<\/p>\n\n\n\n