Why Some Patients Never Fully Recover: Post Active Phase of Infection Syndromes (PAPIS)

A topical collection in Healthcare (ISSN 2227-9032). This collection belongs to the section "Chronic Care".

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Editors


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Collection Editor
School of Osteopathic Medicine, Rowan University, Glassboro, NJ 08028, USA
Interests: ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome); mechanisms of chronic illness; public health access and disparities
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Collection Editor
Albany Health Management Associates Inc., Albany, NY 12203, USA
Interests: chronic illness; public health; trauma; ME/CFS

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Collection Editor
Department of pediatric dentistry, Special Care Treatment Center, Rutgers School of Dental Medicine, Newark, NJ 07103, USA
Interests: interdisciplinary patient care; dental medicine

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Collection Editor
Department of Pediatrics, New Jersey Medical School, Rutgers University, Newark, NJ 07103, USA
Interests: allergy; immunology; infectious diseases; medical education; pediatric palliative; end of life care; pediatrics

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Collection Editor
Neuro-Immune Institute of Medicine, Nova Southeastern University, Davie, FL 33314, USA
Interests: ME/CFS

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Collection Editor
1. Department of Exercise Physiology and Functional Anatomy, Ludwik Rydygier Collegium Medicum in Bydgoszcz Nicolaus Copernicus University in Toruń, Świętojańska 20, 85-077 Bydgoszcz, Poland
2. Laboratory of Centre for Preclinical Research, Department of Experimental and Clinical Physiology, Warsaw Medical University, 1b Banacha Street, 02-097 Warsaw, Poland
Interests: pathological mechanisms; biomarkers; diagnosis and therapy of chronic fatigue syndrome (ME/CFS)
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Collection Editor
Infectious Diseases – Internal Medicine, Cornell University, New York, NY 10065, USA
Interests: immunology; ME/CFS

Topical Collection Information

Dear Colleagues,

With estimates of Long-haul COVID, also known as PASC (post-acute sequelae SARS-CoV-2 infection), increasing to above 30 percent of COVID-19 infected patients, it is time to recognize the existence of multiple Post Active Phase of Infection Syndromes (PAPIS) and focus attention on the appropriate mechanisms for diagnosing, treating and curing these devastating illnesses and their societal impact. The inventory of symptoms of Long-haul COVID-19 patients, many of whom never achieve pre-illness levels of wellness, is not unique to this chronic illness but echoes the symptoms of other post-acute phases of infection patients described in the medical literature.  Examples of other illnesses that should be considered included are:  Coxsackie B, Ebola, Epstein-Barr virus, Herpes viruses, myalgic encephalomyelitis/chronic fatigue syndrome,post-polio syndrome, and Zika virus. While the aforementioned are all viral infections, there is also an overlap of symptoms with conditions of non-viral origin such as chronic Lyme disease and untreated syphilis. Fungal infections, as well as chemical and other environmental sensitivities, may be additional triggers of PAPIS.  This suggests that untreated and undertreated parasitic, viral and bacterial infections and other triggers should all be considered for study and comparison.

More productive research is urgently needed to enhance our understanding of the underlying pathophysiology or pathophysiologies of these conditions and to enable more effective patient care.

The intent of the PAPIS Topical Collection is broad.  We welcome descriptions of syndromes satisfying the broad case definition of PAPIS, improved case definitions of the diseases satisfying the PAPIS criteria, proposed mechanisms of pathophysiology, outcomes of treatment trials and case reports of PAPIS diseases, and both pharmacological and non-pharmacological approaches to PAPIS patient management.  Because of the unprecedented number of PAPIS patients anticipated worldwide in the wake of the COVID-19 pandemic, manuscripts concerning the economic, public health and societal experiences of PAPIS patients fall within the purview of the PAPIS Topical Collection.

* Due to his passing, Professor Derek Pheby, BSc, MB, BS, LLM, MPhil, FFPH, is no longer serving as a Guest Editor of the PAPIS Topical Collection. Sadly, we are withdrawing his name from the list of Guest Editors. Professor Pheby was a strong supporter of ME/CFS research and clinical care. He will be missed by his many colleagues and will be remembered for his involvement in setting up the ME Biobank and scientific coordination of EUROMENE. Professor Phebe was committed to advancing the boundaries of ME/CFS and fostering international collaborations as evidenced by his willingness to serve as a Guest Editor of the PAPIS Topical Collection.

Kenneth Friedman
Patricia A. Fennell
Evan Spivack
James M. Oleske
Nancy Klimas
Pawel Zalewski
Susan M. Levine
Collection Editors

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Published Papers (6 papers)

2023

Jump to: 2022

12 pages, 881 KiB  
Case Report
A Case Study of Successful Application of the Principles of ME/CFS Care to an Individual with Long COVID
by Lindsay S. Petracek, Camille A. Broussard, Renee L. Swope and Peter C. Rowe
Healthcare 2023, 11(6), 865; https://0-doi-org.brum.beds.ac.uk/10.3390/healthcare11060865 - 16 Mar 2023
Cited by 2 | Viewed by 10786
Abstract
Persistent fatigue is one of the most common symptoms of post-COVID conditions, also termed long COVID. At the extreme end of the severity spectrum, some individuals with long COVID also meet the criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), raising the possibility that [...] Read more.
Persistent fatigue is one of the most common symptoms of post-COVID conditions, also termed long COVID. At the extreme end of the severity spectrum, some individuals with long COVID also meet the criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), raising the possibility that symptom management approaches for ME/CFS may benefit some long COVID patients. We describe the long-term outcomes of a 19-year-old male who developed profound impairment consistent with ME/CFS after a SARS-CoV-2 infection early in the pandemic. We evaluated and treated him using our clinic’s approach to ME/CFS. This included a history and physical examination that ascertained joint hypermobility, pathological reflexes, physical therapy maneuvers to look for a range of motion restrictions in the limbs and spine, orthostatic testing, and screening laboratory studies. He was found to have profound postural tachycardia syndrome, several ranges of motion restrictions, and mast cell activation syndrome. He was treated according to our clinic’s guidelines for managing ME/CFS, which included manual physical therapy maneuvers and both non-pharmacologic measures and medications directed at postural tachycardia syndrome and mast cell activation. He experienced significant improvement in his symptoms over 30 months. His case emphasizes how the application of the principles of treating ME/CFS has the potential to provide a direction for treating long COVID. Full article
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2022

Jump to: 2023

10 pages, 229 KiB  
Communication
What Primary Care Practitioners Need to Know about the New NICE Guideline for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in Adults
by Caroline Kingdon, Adam Lowe, Charles Shepherd and Luis Nacul
Healthcare 2022, 10(12), 2438; https://0-doi-org.brum.beds.ac.uk/10.3390/healthcare10122438 - 02 Dec 2022
Cited by 1 | Viewed by 13834
Abstract
The new NICE guideline for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), published in October 2021, makes significant changes in treatment recommendations. It acknowledges the complexity of this chronic medical condition, which always impacts quality of life and can be profoundly disabling, recognising the prejudice [...] Read more.
The new NICE guideline for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), published in October 2021, makes significant changes in treatment recommendations. It acknowledges the complexity of this chronic medical condition, which always impacts quality of life and can be profoundly disabling, recognising the prejudice and stigma that people with ME/CFS often experience in the absence of any specific diagnostic test. The guideline outlines steps for accurate diagnosis, recognising post-exertional malaise as a core symptom; importantly, ME/CFS can now be diagnosed after just 3 months in a bid to improve long-term health outcomes. It recommends the need for individual, tailored management by a multi-disciplinary team, ensuring that the wellbeing of the individual is paramount. The guideline makes clear that any programme based on fixed incremental increases in physical activity or exercise, for example, graded exercise therapy (GET), should not be offered as a treatment for ME/CFS and emphasises that cognitive behavioural therapy (CBT) should only be offered as a supportive intervention. Because of the rigorous methodology required by NICE Committee review and the inclusion of the testimony of people with lived experience as committee members, this guideline will influence the future diagnosis and management of ME/CFS in the UK and beyond. Full article
9 pages, 1307 KiB  
Article
Long-Haul COVID Patients: Prevalence of POTS Are Reduced but Cerebral Blood Flow Abnormalities Remain Abnormal with Longer Disease Duration
by C. (Linda) M. C. van Campen and Frans C. Visser
Healthcare 2022, 10(10), 2105; https://doi.org/10.3390/healthcare10102105 - 21 Oct 2022
Cited by 10 | Viewed by 10513
Abstract
Background: Postural orthostatic tachycardia syndrome (POTS) has been described early after the onset of the COVID-19 infection, but also orthostatic hypotension (OH). In the present study, we hypothesized that orthostatic intolerance decreases over time. Methods: In 29 long-haul COVID-19 (LHC) patients, a tilt [...] Read more.
Background: Postural orthostatic tachycardia syndrome (POTS) has been described early after the onset of the COVID-19 infection, but also orthostatic hypotension (OH). In the present study, we hypothesized that orthostatic intolerance decreases over time. Methods: In 29 long-haul COVID-19 (LHC) patients, a tilt test was performed, including measurements of cerebral blood flow (CBF) by extracranial Doppler. The time interval between the onset of infection and the tilt test varied between 3 and 28 months. Results: In the first 12 months after the infection, 71% of the LHC patients showed POTS and after 24 months none of them. In the first 12 months, 29% of patients had a normal heart rate and blood pressure response (normHRBP) and after 24 months 75% (distribution of POTS, OH, and a normHRBP over time: p < 0.0001). Linear regression showed that, over time, there was a decrease in the abnormal CBF during the tilt (p = 0.024) but remained abnormal. Conclusion: In LHC patients, hemodynamic abnormalities of a tilt test change over time. Patients studied early after the onset of the disease mainly exhibit POTS, but patients studied later in the time course mainly show a normHRBP or OH. In addition, the abnormal CBF reduction improves over time, but CBF remains abnormal. Full article
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12 pages, 5569 KiB  
Article
Orthostatic Intolerance in Long-Haul COVID after SARS-CoV-2: A Case-Control Comparison with Post-EBV and Insidious-Onset Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients
by C. (Linda) M. C. van Campen and Frans C. Visser
Healthcare 2022, 10(10), 2058; https://0-doi-org.brum.beds.ac.uk/10.3390/healthcare10102058 - 17 Oct 2022
Cited by 11 | Viewed by 14643
Abstract
Background: As complaints of long-haul COVID patients are similar to those of ME/CFS patients and as orthostatic intolerance (OI) plays an important role in the COVID infection symptomatology, we compared 14 long-haul COVID patients with 14 ME/CFS patients with a post-viral Ebstein-Barr (EBV) [...] Read more.
Background: As complaints of long-haul COVID patients are similar to those of ME/CFS patients and as orthostatic intolerance (OI) plays an important role in the COVID infection symptomatology, we compared 14 long-haul COVID patients with 14 ME/CFS patients with a post-viral Ebstein-Barr (EBV) onset and 14 ME/CFS patients with an insidious onset of the disease. Methods: In all patients, OI analysis by history taking and OI assessed during a tilt test, as well as cerebral blood flow measurements by extracranial Doppler, and cardiac index measurements by suprasternal Doppler during the tilt test were obtained in all patients. Results: Except for disease duration no differences were found in clinical characteristics. The prevalence of POTS was higher in the long-haul patients (100%) than in post-EBV (43%) and in insidious-onset (50%) patients (p = 0.0002). No differences between the three groups were present in the prevalence of OI, heart rate and blood pressure changes, changes in cerebral blood flow or in cardiac index during the tilt test. Conclusion: OI symptomatology and objective abnormalities of OI (abnormal cerebral blood flow and cardiac index reduction during tilt testing) are comparable to those in ME/CFS patients. It indicates that long-haul COVID is essentially the same disease as ME/CFS. Full article
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8 pages, 267 KiB  
Article
Ensuring the Voice of the Very Severely Affected Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patient Is Heard in Research—A Research Model
by Helen Baxter
Healthcare 2022, 10(7), 1278; https://0-doi-org.brum.beds.ac.uk/10.3390/healthcare10071278 - 10 Jul 2022
Cited by 1 | Viewed by 3769
Abstract
Most of the research about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has focused on ambulant patients who are able to attend clinics. It is estimated that 25% of people with ME/CFS are severely, or very severely, affected and are housebound or bedbound; some require [...] Read more.
Most of the research about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has focused on ambulant patients who are able to attend clinics. It is estimated that 25% of people with ME/CFS are severely, or very severely, affected and are housebound or bedbound; some require tube feeding. Due to the severity of their illness, these patients have largely been excluded from research and are often described as ‘hard to reach.’ A questionnaire was devised to gather data about their experiences of accessing tube feeding. By making the necessary reasonable adjustments, such as direct outreach and the option to complete the questionnaire by telephone or texting, very severely affected patients were enabled to participate and provided invaluable contributions. This study aimed to act as a model for future researchers. Full article
9 pages, 1591 KiB  
Review
Adverse Childhood Events, Post-Traumatic Stress Disorder, Infectious Encephalopathies and Immune-Mediated Disease
by Robert C. Bransfield
Healthcare 2022, 10(6), 1127; https://0-doi-org.brum.beds.ac.uk/10.3390/healthcare10061127 - 17 Jun 2022
Cited by 2 | Viewed by 5557
Abstract
Adverse Childhood Events (ACE), Post-Traumatic Stress Disorder (PTSD), and infectious encephalopathies are associated with immune-mediated diseases. Data supporting this are reviewed, and an integrated hypothesis is provided. All three can be associated with intrusive symptoms and temporal lobe pathology. ACE and PTSD are [...] Read more.
Adverse Childhood Events (ACE), Post-Traumatic Stress Disorder (PTSD), and infectious encephalopathies are associated with immune-mediated diseases. Data supporting this are reviewed, and an integrated hypothesis is provided. All three can be associated with intrusive symptoms and temporal lobe pathology. ACE and PTSD are accompanied by an impaired mental capacity to differentiate external danger vs. safety. Infectious encephalopathies are accompanied by a failure of adaptive immunity and an impaired immune capacity to differentiate internal danger vs. safety. All three conditions are associated with impairments to differentiate danger vs. safety and adapt effectively. There are reciprocal interactions between ACE, PTSD, and infectious encephalopathies with accompanying persistent immune activation. This is associated with immune dysregulation, chronic hyperarousal, activation of the stress response, and impairments of the fear recognition and response neural circuits, hypothalamic–pituitary–adrenal axis, amygdala, and hippocampus. The pathophysiological processes can result in a broad spectrum of chronic neuropsychiatric and somatic symptoms and diseases. Understanding the psychodynamic, neurological, neuroimmune, inflammatory and autoimmune components of this interactive process expands the effective treatment opportunities. Full article
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