This Is CFS Art Launches Online Exhibit Showcasing Artists Living with CFS/ME

[Swansea, NSW, Australia] – [3 October] – This Is CFS Art is excited to announce the launch of its new website, thisiscfs.art, a unique online space dedicated to showcasing the incredible work of artists who live with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). This online exhibit aims to highlight the resilience and creativity of these artists, offering a meaningful outlet for their voices and stories.

CFS/ME affects millions globally, yet they tend to feel invisible. The invisibility applies to both the range of symptoms that are usually not obvious for outsiders but can be very debilitating, and the fact that CFS/ME sufferers often ‘drop out’ of their life and become invisible to society. This Is CFS Art seeks to change that by providing a way to show what it means to live with CFS/ME in a variety artworks submitted by a range of artists.

“I am committed to amplifying the voices of artists who live with CFS/ME,” said Zoe Wright, Founder of This is CFS Art. “Through this platform, I hope to make visible both the disease itself and the people living with it. At the same time, this exhibit celebrates the resilience and creativity of these artists.”

Founder Zoe Wright lives with CFS/ME herself and has found art a helpful way to express the feelings and experiences of living with a chronic condition that is so little understood.

Visit thisiscfs.art today to explore the powerful artistic expressions of those living with CFS/ME. Artists living with the condition are invited to submit their own artwork through the website.

About CFS Art: CFS Art is dedicated to showcasing the work of contemporary artists who live with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. Through this platform, CFS Art seeks to raise awareness of the condition and celebrate the incredible talent and creativity of those affected.

For more information, please visit thisiscfs.art

-Zoe Wright

Contact: Zoe Wright
Founder
www.thisiscfs.art

ANZMES Releases Essential Resource for Healthcare Professionals to Manage Hospital Stays of Severe ME/CFS and long COVID Patients

Press Release:

ANZMES (the National Advisory on ME/CFS and a RNZCGP registered provider of continuing education) has released a short reference guide for secondary care. The resource acts as a guide for healthcare professionals in managing hospital stays for patients suffering from severe-very severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and long COVID (lC). It aims to improve patient care by addressing the unique needs and symptoms of patients with severe ME/CFS and lC during their hospital admissions.

“ME/CFS is a complex condition and its severity is often misunderstood by healthcare professionals. Severe patients are housebound. Very severe patients are bedbound, with very high needs requiring 24/7 care. Hospitalisation often occurs due to undernutrition, infections, and dysautonomic issues. Therefore, it is crucial that healthcare professionals have the knowledge to effectively manage patients during hospital admissions so as not to exacerbate their severe and debilitating symptoms,” says ANZMES president, Fiona Charlton.

“Our aim with this new resource is to provide a clear and concise reference guide for healthcare professionals to enhance patient care. While the assessment and evaluation of long COVID may differ from ME/CFS, the management of long COVID closely mirrors it, so we have leveraged our medical team’s expertise to develop a guide to support the effective care of these patients in a hospital setting.” She says.

The resource outlines essential strategies for managing severe symptoms, including intense muscle and joint pain, extreme sensitivity to light, sound, touch, and chemicals, impaired mobility often necessitating a wheelchair, severe gastrointestinal issues, and increased susceptibility to infections due to immune dysfunction.

“For very severe patients, a light touch of the arm can be interpreted by the body as pain. Bright light can cause post-exertional malaise. People with very severe ME/CFS and long COVID spend the majority of their lives in darkened rooms, wearing noise cancelling headphones and eye masks. They are unable to eat properly, or bathe and toilet themselves without full time carers, and it is often a family member who assumes this role.” The impact of this on everyone cannot be underestimated.

An overview of key recommendations include:

  • Sensory Adjustments: Dim lighting, minimise noise, and provide private rooms to reduce sensory stress.
  • Medication and Nutrition: Avoid histamine-releasing anaesthetics and muscle relaxants. Use medications like propofol, midazolam, and fentanyl with caution. Monitor hydration and consider IV saline for orthostatic intolerance.[1]
  • Activity and Rest: Recognise that even minimal interactions, such as being spoken to or exposure to light, can trigger PEM. Prioritise rest and avoid any unnecessary activity.
  • Communication and Cognitive Support: Involve family and caregivers as representatives, especially when the patient cannot communicate; or simplify communication by providing written instructions and allowing extra time for patients to process information.
  • Care and Support: Recognise the psychological impact, validate the severity of conditions, and provide access to counselling and mental health support. Include family members or caregivers in discussions and allow them to stay with the patient if requested.

ANZMES emphasises the importance of personalised care plans, the involvement of patient’s family members and their regular health team to understand the severity of their condition. The guide also encourages connections with local support groups and resources for additional advocacy and support for not only patients, but also their carers to avoid burnout. Remote consultations and home visits are recommended to avoid unnecessary hospital admissions.

ANZMES president, Fiona Charlton concludes “We believe that education is key to improving outcomes for patients with severe-very severe ME/CFS and long COVID. By providing this resource, we aim to enhance the knowledge and confidence of healthcare professionals so they are equipped when these patients are admitted under their care.”

Understanding ME/CFS and long COVID:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a long-term, multi-systemic illness affecting the nervous, endocrine, autonomic, and immune systems. Patients experience severe fatigue, post-exertional malaise (PEM), unrefreshing sleep, cognitive impairment, and orthostatic intolerance. With over 100-200+ potential symptoms, the condition’s impact can vary greatly, making diagnosis and management highly individualised. Roughly 25% of all ME/CFS cases are categorised as mild, 50% as moderate-severe and 25% as very severe.[2] [3]

Long COVID is characterised by persistent, unexplained symptoms following infection with COVID-19 (SARS-CoV-2) lasting more than 12 weeks and not explained by an alternative diagnosis. Both conditions share symptoms such as extreme fatigue, cognitive dysfunction, and post-exertional symptom exacerbation (PESE), with up to 50% of long COVID cases fitting the diagnostic criteria for ME/CFS.

Post-Exertional Malaise (PEM)

Post-Exertional Malaise (PEM), also referred to as post-exertional symptom exacerbation (PESE) in the context of long COVID, is a debilitating response to normal, every-day activities in people with ME/CFS. For individuals with severe-very severe ME/CFS or lC, this can be triggered by sensory overload, such as exposure to light or even simple conversations. Repeated episodes of PEM can exacerbate these already severe symptoms, and even minimal exertion can lead to significant setbacks for the patient’s health and wellbeing.

About ANZMES

ANZMES, the Associated New Zealand ME Society, is the National Advisory on ME/CFS. Established in 1980, ANZMES has been at the forefront of research, representation, and education for ME/CFS in Aotearoa/New Zealand. The organisation is a registered provider of continuing medical education with the Royal New Zealand College of General Practitioners (RNZCGP) and is dedicated to improving the lives of those affected by ME/CFS and long COVID. ANZMES is a founding member of the World ME Alliance.

 

COVID-19 Antibody Discovery Could Explain Long COVID

Press Release:

UVA Health researchers have discovered a potential explanation for some of the most perplexing mysteries of COVID-19 and long COVID. The surprising findings could lead to new treatments for the difficult acute effects of COVID-19, long COVID and possibly other viruses.

Researchers led by UVA’s Steven L. Zeichner, MD, PhD, found that COVID-19 may prompt some people’s bodies to make antibodies that act like enzymes that the body naturally uses to regulate important functions – blood pressure, for example. Related enzymes also regulate other important body functions, such as blood clotting and inflammation.

Doctors may be able to target these “abzymes” to stop their unwanted effects. If abzymes with rogue activities are also responsible for some of the features of long COVID, doctors could target the abzymes to treat the difficult and sometimes mysterious symptoms of COVID-19 and long COVID at the source, instead of merely treating the downstream symptoms.

“Some patients with COVID-19 have serious symptoms and we have trouble understanding their cause. We also have a poor understanding of the causes of long COVID,” said Zeichner, a pediatric infectious disease expert at UVA Children’s. “Antibodies that act like enzymes are called ‘abzymes.’ Abzymes are not exact copies of enzymes and so they work differently, sometimes in ways that the original enzyme does not. If COVID-19 patients are making abzymes, it is possible that these rogue abzymes could harm many different aspects of physiology. If this turns out to be true, then developing treatments to deplete or block the rogue abzymes could be the most effective way to treat the complications of COVID-19.”

Understanding COVID-19 Abzymes

SARS-CoV-2, the virus that causes COVID, has protein on its surface called the Spike protein. When the virus begins to infect a cell, the Spike protein binds a protein called Angiotensin Converting Enzyme 2, or ACE2, on the cell’s surface. ACE2’s normal function in the body is to help regulate blood pressure; it cuts a protein called angiotensin II to make a derivative protein called angiotensin 1-7. Angiotensin II constricts blood vessels, raising blood pressure, while angiotensin 1-7 relaxes blood vessels, lowering blood pressure.

Zeichner and his team thought that some patients might make antibodies against the Spike protein that looked enough like ACE2 so that the antibodies also had enzymatic activity like ACE2, and that is exactly what they found.

Recently, other groups have found that some patients with long COVID have problems with their coagulation systems and with another system called “complement.” Both the coagulation system and the complement system are controlled by enzymes in the body that cut other proteins to activate them. If patients with long COVID make abzymes that activate proteins that control processes such as coagulation and inflammation, that could explain the source of some of the long COVID symptoms and why long COVID symptoms persist even after the body has cleared the initial infection. It also may explain rare side effects of COVID-19 vaccination.

To determine if antibodies could be having unexpected effects in COVID patients, Zeichner and his collaborators examined plasma samples collected from 67 volunteers with moderate or severe COVID on or around day 7 of their hospitalization. The researchers compared what they found with plasma collected in 2018, prior to the beginning of the pandemic. The results showed that a small subset of the COVID patients had antibodies that acted like enzymes.

While our understanding of the potential role of abzymes in COVID-19 is still in its early stages, enzymatic antibodies have already been detected in certain cases of HIV, Zeichner notes. That means there is precedent for a virus to trigger abzyme formation. It also suggests that other viruses may cause similar effects.

Zeichner, who is developing a universal coronavirus vaccine, expects UVA’s new findings will renew interest in abzymes in medical research. He also hopes his discovery will lead to better treatments for patients with both acute COVID-19 and long COVID.

“We now need to study pure versions of antibodies with enzymatic activity to see how abzymes may work in more detail, and we need to study patients who have had COVID-19 who did and did not develop long COVID,” he said. “There is much more work to do, but I think we have made a good start in developing a new understanding of this challenging disease that has caused so much distress and death around the world. The first step to developing effective new therapies for a disease is developing a good understanding of the disease’s underlying causes, and we have taken that first step.”

Findings Published

The researchers have published their findings in the scientific journal mBio, a publication of the American Society for Microbiology. The research team consisted of Yufeng Song, Regan Myers, Frances Mehl, Lila Murphy, Bailey Brooks, and faculty members from the Department of Medicine, Jeffrey M. Wilson, Alexandra Kadl, Judith Woodfolk.

“It’s great to have such talented and dedicated colleagues here at UVA who are excited about working on new and unconventional research projects,” said Zeichner.

Zeichner is the McClemore Birdsong Professor in the University of Virginia School of Medicine’s Departments of Pediatrics and Microbiology, Immunology and Cancer Biology; the director of the Pendleton Pediatric Infectious Disease Laboratory; and part of UVA Children’s Child Health Research Center.

The abzyme research was supported by UVA, including the Manning Fund for COVID-19 Research at UVA; the Ivy Foundation; the Pendleton Laboratory Fund for Pediatric Infectious Disease Research; a College Council Minerva Research Grant; the Coulter Foundation; and the National Institutes of Health’s National Institute of Allergy and Infection Diseases, grant R01 AI176515. Additional support came from the HHV-6 Foundation.

Source: UVA Health News

NIH study offers new clues into the causes of post-infectious ME/CFS

Press Release:

In a detailed clinical study, researchers at the National Institutes of Health have found differences in the brains and immune systems of people with post-infectious myalgic encephalomyelitis/chronic fatigue syndrome (PI-ME/CFS). They also found distinct differences between men and women with the disease. The findings were published in Nature Communications.

“People with ME/CFS have very real and disabling symptoms, but uncovering their biological basis has been extremely difficult,” said Walter Koroshetz, M.D., director of NIH’s National Institute of Neurological Disorders and Stroke (NINDS). “This in-depth study of a small group of people found a number of factors that likely contribute to their ME/CFS. Now researchers can test whether these findings apply to a larger patient group and move towards identifying treatments that target core drivers of the disease.”

A team of multidisciplinary researchers discovered how feelings of fatigue are processed in the brains of people with ME/CFS. Results from functional magnetic resonance imaging (fMRI) brain scans showed that people with ME/CFS had lower activity in a brain region called the temporal-parietal junction (TPJ), which may cause fatigue by disrupting the way the brain decides how to exert effort.

They also analyzed spinal fluid collected from participants and found abnormally low levels of catecholamines and other molecules that help regulate the nervous system in people with ME/CFS compared to healthy controls. Reduced levels of certain catecholamines were associated with worse motor performance, effort-related behaviors, and cognitive symptoms. These findings, for the first time, suggest a link between specific abnormalities or imbalances in the brain and ME/CFS.

“We think that the immune activation is affecting the brain in various ways, causing biochemical changes and downstream effects like motor, autonomic, and cardiorespiratory dysfunction,” said Avindra Nath, M.D., clinical director at NINDS and senior author of the study.

Immune testing revealed that the ME/CFS group had higher levels of naive B cells and lower levels of switched memory B cells—cells that help the immune system fight off pathogens—in blood compared to healthy controls. Naive B cells are always present in the body and activate when they encounter any given antigen, a foreign substance that triggers the immune system. Memory B cells respond to a specific antigen and help maintain adaptive or acquired immunity. More studies are needed to determine how these immune markers relate to brain dysfunction and fatigue in ME/CFS.

To study fatigue, Dr. Nath and his team asked participants to make risk-based decisions about exerting physical effort. This allowed them to assess the cognitive aspects of fatigue, or how an individual decides how much effort to exert when given a choice. People with ME/CFS had difficulties with the effort choice task and with sustaining effort. The motor cortex, a brain region in charge of telling the body to move, also remained abnormally active during fatiguing tasks. There were no signs of muscle fatigue. This suggests that fatigue in ME/CFS could be caused by a dysfunction of brain regions that drive the motor cortex, such as the TPJ.

“We may have identified a physiological focal point for fatigue in this population,” said Brian Walitt, M.D., M.P.H., associate research physician at NINDS and first author of the study. “Rather than physical exhaustion or a lack of motivation, fatigue may arise from a mismatch between what someone thinks they can achieve and what their bodies perform.”

Deeper analyses revealed differences between men and women in gene expression patterns, immune cell populations, and metabolic markers. Males had altered T cell activation, as well as markers of innate immunity, while females had abnormal B cell and white blood cell growth patterns. Men and women also had distinct markers of inflammation.

“Men and women were quite divergent in their data, and that tells you that ME/CFS is not one-size-fits-all,” said Dr. Nath. “Considering male and female immune differences in ME/CFS, the results may open up new avenues of research that could provide insight into other infection-associated chronic diseases.”

The study, which was conducted at the NIH Clinical Center, took a comprehensive look at ME/CFS that developed after a viral or bacterial infection. The team used state-of-the-art techniques to examine 17 people with PI-ME/CFS who had been sick for less than five years and 21 healthy controls. Participants were screened and medically evaluated for ME/CFS over several days and underwent extensive tests, including clinical exams, fMRI brain imaging, physical and cognitive performance tests, autonomic function tests, skin and muscle biopsies, and advanced analyses of blood and spinal fluid. Participants also spent time in metabolic chambers where, under controlled conditions, their diet, energy consumption, metabolism, sleep patterns, and gut microbiome were evaluated. During a second visit, they completed a cardiopulmonary exercise test to measure the body’s response to exercise.

Many studies have identified immunemicrobiome, and other abnormalities in ME/CFS, but the results tend to be inconsistent and exactly how these markers relate to or cause fatigue and other symptoms is unknown. By using a rigorous phenotyping approach to pull out meaningful differences, this study helps validate prior results and may identify new ways to target the brain or immune system therapeutically.

The highly collaborative project involved 75 investigators across 15 institutes and centers in the NIH Intramural Research Program, and at national and international institutions. Dr. Nath and his colleagues plan to publish additional findings from the data that was collected during this study.

The study was supported in part by the Intramural Research Program at the NIH.

Article:

Walitt, B., et al. “Deep phenotyping of Post-infectious Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.” Nature Communications. February 21, 2024. DOI: 10.1038/s41467-024-45107-3


NINDS is the nation’s leading funder of research on the brain and nervous system. The mission of NINDS is to seek fundamental knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disease.

About the National Institutes of Health (NIH): NIH, the nation’s medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit the NIH website.

Community Advisory Committee Develops Priorities for ME/CFS Research

Press Release:

Posted by CII Coordinator, May 10, 2022

The Community Advisory Committee (CAC) for the NIH ME/CFS Research Network was established to bridge the gap between researchers and the ME/CFS community with the goal of accelerating the pace of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) research. The CAC is a group of 15 individuals from various professional backgrounds, all of whom have lived experience of the disease.

The CAC Research Priorities working group has authored a report on the challenges and priorities to be addressed to achieve needed outcomes for people with ME/CFS. This has become especially urgent given the large number of people who already have, and are expected to develop, ME/CFS following COVID-19.

ME/CFS is a debilitating, chronic, complex disease that most often follows an infection and is associated with neurological, autonomic, immunological, and metabolic abnormalities. Patients experience a substantial impairment in functioning, and symptoms such as sleep dysfunction, cognitive impairment, orthostatic intolerance, pain, fatigue, and the hallmark post-exertional malaise (PEM), an exacerbation of symptoms following even small amounts of previously tolerated activity. An estimated 836,000 to 2.5 million Americans suffer from ME/CFS with a greater prevalence in females, adults and possibly people who are Black and Latinx. There are no validated biomarkers or FDA-approved treatments and patients can struggle to access adequate clinical care. An estimated 25% are homebound or bedbound and 75% are unable to work. Recovery is rare and patients can remain ill for decades.

Progress in understanding the etiology of ME/CFS and developing biomarkers and treatments has been constrained by a number of interrelated challenges, such as the inherent complexity and heterogeneity of the disease, inadequate study methods, challenges in collaborating across all stakeholders, misunderstanding about the nature of the disease, and lack of research funding and researchers in the field. But even with these challenges, substantial progress has been made in understanding some of the underlying pathology.

The pandemic has created the tragic opportunity to finally understand how an infection can result in chronic illness. At the same time, the knowledge and expertise gained from years of ME/CFS research has provided valuable insights for Long COVID research.

Leveraging this opportunity for ME/CFS requires ME/CFS-specific funding and a ME/CFS strategic research plan to expedite progress in ME/CFS diagnostics and treatments. It also requires the integration of learnings from ME/CFS research into the PASC strategy, not only to help accelerate research in Long COVID but to better understand ME/CFS onset, natural history, and pathology. A natural experiment is underway which cannot be replicated, and this calls for swift, decisive action before the window of opportunity to study early-onset ME/CFS closes as the pandemic resolves.

People with ME/CFS, including those who have developed ME/CFS following COVID-19, are waiting.

The CAC Research Priorities working group developed this comprehensive but concise report outlining the long-standing barriers that have constrained progress in ME/CFS and strategies for their resolution, as well as key short and longer term research priorities that need to be progressed to accelerate meaningful research and achieve outcomes for people with ME/CFS, including those whose ME/CFS developed following COVID-19. These recommendations can be used by researchers to generate new study designs and refine existing goals, facilitate collaborations between research domains and stakeholders, and by federal and private funders to guide award distribution and agenda setting.

Click here to download the CAC Research Priorities Report

The Research Priorities working group is available and eager to discuss the contents of this document with researchers. Please contact us at any time at: CAC.MECFS@gmail.com

The authors of this guide are: Mary Dimmock, Rochelle Joslyn (chair), Sabrina Poirier, Jaime Seltzer and CAC Director, Allison Kanas.

This work was supported by US Public Health Service grant 5U54AI138370 and 5U24NS105535. This content does not represent the official views of the National Institute of Neurological Disorders and Stroke or the National Institutes of Health.

Case Study Suggests Young People Susceptible To Chronic Fatigue Syndrome After Covid-19

Press Release:

With more adolescents and young adults being treated for COVID-19, clinicians are concerned that these people also will start showing post-COVID — or “long haul” — symptoms from their bouts with the virus. A recent Johns Hopkins Medicine review of three case studies provides some of the first evidence that one serious post-COVID problem may be myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), the complex, multisystem disorder previously known as chronic fatigue syndrome.

The findings were published April 29 in the journal Frontiers in Medicine.

“In the three patients studied — all of whom had confirmed or highly probable COVID-19 infections early in the pandemic — we observed ME/CFS-like symptoms within the first two weeks of illness,” says Peter Rowe, M.D., director of the Chronic Fatigue Clinic at Johns Hopkins Children’s Center and professor of pediatrics at the Johns Hopkins University School of Medicine. “At six months following their illness, all three still met the criteria for being diagnosed with ME/CFS.”

In a recent report, the U.S. Centers for Disease Control and Prevention (CDC) noted that U.S. hospitals are seeing more adolescents and young adults admitted with COVID-19 as more contagious variants of SARS-CoV-2 — the virus that causes the disease — spread. The agency believes that the youthful case surge may be the result of those ages 10 to 24 being among the last prioritized to get the coronavirus vaccines, and the fact that many who are eligible have yet to receive their shots. Also, the CDC says, this group is more likely to be involved in high-risk behaviors such as playing close-contact sports and going out to bars.

The three patients evaluated in the recent study were a 19-year-old man and two women, ages 22 and 30, whose COVID-19 symptoms began between April and June 2020, and who were referred to the Chronic Fatigue Clinic between August and October of the same year. Symptoms of orthostatic intolerance — a group of clinical conditions that includes fatigue, lightheadedness and difficulty concentrating, and are linked with greater than 90% of the people with ME/CFS — were prominent in all three from the outset of their COVID-19 illness.

A six-month post-COVID symptom onset examination, including evaluations of movement, neurological function and continued orthostatic intolerance, was conducted on each of the patients to determine if ME/CFS could be diagnosed. All three easily met the criteria.

Interestingly, Rowe says, all three patients had relatively mild COVID-19 respiratory symptoms and none required hospitalization, yet it appears to have translated into the more serious secondary problem of ME/CFS for them all.

“This finding is consistent with previous studies in older patients with COVID-19 who showed persistent fatigue months after infection, regardless of the severity of the initial infection,” he explains. “This raises the question of how many ME/CFS cases before the COVID-19 pandemic might have been due to mild, subclinical or asymptomatic viral infections [such as Epstein-Barr virus or human herpesvirus 6], including cases in adolescents, young adults and older people.”

Rowe and his colleagues feel that further research is needed to define the biological mechanism by which ME/CFS arises from COVID-19, and then use that insight to develop treatment strategies that can return patients with post-COVID ME/CFS back to their previous quality of life.

Rowe is available for interviews.

https://www.hopkinsmedicine.org/news/newsroom/news-releases/covid-19-story-tip-case-study-suggests-young-people-may-be-susceptible-to-chronic-fatigue-following-covid-19

Media Contact: Michael E. Newman, mnewma25@jhmi.edu

NIH-funded study examines mono, chronic fatigue syndrome in college students

Press Release: Eurekalert, Jan 22, 2021: Many college students fully recover from infectious mononucleosis (which is almost always caused by Epstein-Barr virus) within 1-6 weeks, but some go on to develop chronic fatigue syndrome, also called myalgic encephalomyelitis (ME/CFS). A longitudinal study from DePaul University and Northwestern University followed 4,501 college students to examine risk factors that may trigger longer illness. The research appears in the journal Clinical Infectious Diseases and was funded by the National Institute of Allergy and Infectious Diseases.

Previous retrospective studies found that risk factors for developing ME/CFS after catching mono included preexisting physical symptoms and the number of days spent in bed, according to co-principal investigators Leonard A. Jason, professor of psychology at DePaul University; and Dr. Ben Z. Katz, a professor of pediatrics at Northwestern University Feinberg School of Medicine and a pediatric infectious disease specialist at Ann & Robert H. Lurie Children’s Hospital of Chicago.

“We are the only study to collect comprehensive biological and behavioral data prior to illness onset, which for the first time allowed us to identify some of the predisposing circumstances or conditions that make certain individuals more likely to get ill due to mono and stay ill,” says Jason, director of the Center for Community Research at DePaul.

Of the 4,501 college students in the study, 238 or 5.3% developed mononucleosis; and 55 of those (23%) met criteria for ME/CFS six months later, 20 of whom (8%) met criteria for severe ME/CFS. Researchers found that those who developed ME/CFS had more physical symptoms and immune irregularities at baseline, but they did not start out with statistically significantly more psychological symptoms such as stress, depression, anxiety or abnormal coping.

“Some people who are attacked by a virus stay sick. What we’ve found is that their emotional functioning and psychological states are not statistically different from those who get attacked by the same virus and recover. This becomes important validating information for those people who have this illness,” says Jason.

Participants in the study each completed seven different surveys to assess potential symptoms of ME/CFS. They also received a comprehensive psychiatric exam, and provided samples of serum, plasma and white blood cells. In future publications, researchers aim to analyze cytokine networks in participants’ blood and other risk factors. Deficiencies in certain cytokines “might suggest predisposing irregularities in immune response,” write the researchers. Vicky Whittemore, the Program Director at the National Institute of Neurological Disorders and Stroke (NINDS), stated that NINDS is supporting follow-up research to continue to study this cohort, and to examine possible predictors of COVID-19 as well.

“Since we have baseline data on nearly all of the 4500 students, we can use our same database to tease out risk factors for COVID infection as well as prolonged recovery from that illness,” says Katz.

###

Other co-authors on the study are Joseph Colter, Mohammed F. Islam and Madison Sunnquist of DePaul’s Center for Community Research.

The study, “Risks for Developing ME/CFS in College Students Following Infectious Mononucleosis: A Prospective Cohort Study” was supported by the National Institute of Allergy and Infectious Diseases, grant number AI 105781.

Research at Ann & Robert H. Lurie Children’s Hospital of Chicago is conducted through the Stanley Manne Children’s Research Institute. The Manne Research Institute is focused on improving child health, transforming pediatric medicine and ensuring healthier futures through the relentless pursuit of knowledge. Lurie Children’s is ranked as one of the nation’s top children’s hospitals by U.S. News & World Report. It is the pediatric training ground for Northwestern University Feinberg School of Medicine. Last year, the hospital served more than 220,000 children from 48 states and 49 countries.

CDC Awards Medscape Education Three Contracts to Develop Medical Education Programming Addressing Major Public Health Needs

Press Release: NEW YORK, Nov. 10, 2020 /PRNewswire/ — Medscape, the leading source of continuing medical education, clinical news, health information, and point-of-care tools for health care professionals (HCPs), has been awarded three contracts by the Centers for Disease Control and Prevention (CDC) Division of Cancer Prevention and Control and the National Center for Emerging and Zoonotic Infectious Diseases (NCEZID). These programs, focused on cancer care, invasive mold infections and chronic fatigue syndrome, will be developed by Medscape Education and delivered to its multi-specialty membership with certification for both physicians and nurses. A division of Medscape, Medscape Education is the leading destination for continuous professional development for HCPs. While the medical world is appropriately focused on COVID-19, it is essential that other clinical topics, which impact the lives of millions of patients, are not overlooked. The programming will be focused on the following:

Cancer care: In collaboration with the National Association of Chronic Disease Directors, Medscape Education will develop curriculum focused on the need for physicians to engage patients on their post-treatment lifestyle such as alcohol and tobacco use, the impact of stress and anxiety, and the importance of physical activity and nutrition, while building awareness of CDC’s “Talk to Someone” tool designed to help cancer patients manage their disease.

Chronic Fatigue Syndrome: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (MECFS) is a severe, long-term illness. People with MECFS are often unable to engage in daily activity due to severe fatigue. COVID-19 brings a new concern to these symptoms, as Dr. Anthony Fauci noted that a consequence of COVID-19 is post-viral syndrome which includes fatigue and difficulty concentrating. Medscape Education will bring these concepts to life through an interactive roundtable discussion designed for physicians, nurses and pharmacists.

Invasive mold infections (IMIs): After natural disasters, such as hurricanes or floods, residents are likely exposed to mold as they return to their homes and begin the remediation process. For immunocompromised people, IMIs can cause severe illness and even death. Medscape Education will develop educational programming for physicians and nurses designed to educate their immunocompromised patients about preventative measures to avoid IMIs.

“Medscape Education is honored to be selected by the Centers for Disease Control and Prevention to develop these educational programs, across a variety of public health issues, which if not rapidly and appropriately treated, can result in advanced illness and even death,” said Douglas Kaufman, Group Vice President, Medscape.

As COVID-19 has increased clinician reliance on digital solutions, Medscape Education continues to focus on providing the most current, practice-relevant education.

“The need to educate providers via Medscape’s trusted and credible digital platform could not be more essential, especially during this time of heightened anxiety and an overwhelmed healthcare system,” Kaufman noted.

The activities will be hosted at www.medscape.org and will be available for continuing education credit.

About Medscape

Medscape is the leading source of clinical news, health information, and point-of-care tools for health care professionals. Medscape offers specialists, primary care physicians, and other health professionals the most robust and integrated medical information and educational tools. Medscape Education (medscape.org) is the leading destination for continuous professional development, consisting of more than 30 specialty-focused destinations offering thousands of free C.M.E. and C.E. courses and other educational programs for physicians, nurses, and other health care professionals. Medscape is a subsidiary of WebMD Health Corp.

About Medscape Education

Medscape Education (medscape.org), a division of Medscape, is the leading destination for continuous professional development, consisting of more than 30 specialty-focused destinations offering thousands of free C.M.E. and C.E. courses and other educational programs for physicians, nurses, and other health care professionals.

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Researchers discover potential therapeutic approach to treat ME / CFS

Press Release:

Researchers have discovered the pharmacological drug, Naltrexone, significantly restored the function of faulty receptors associated with myalgic encephalomyelitis, also known as Chronic Fatigue Syndrome (ME/CFS).

Researchers from the National Centre for Neuroimmunology and Emerging Diseases (NCNED), Menzies Health Institute Queensland, Griffith University led the research, which has been published in Frontiers in Immunology.

NCNED is the peak research centre nationally and is internationally recognised for its world-leading research on the identification of the pathology, developing a screening test and pharmacotherapeutic intervention for ME/CFS.

NCNED researchers were the first in the world to develop the gold standard in experimental research known as patch clamp technique in immune cells to measure TRP receptor function.

The immune cells are used as a model for assessing TRP receptor function and reflect physiological activity in all body tissues expressing these receptors.

NCNED researchers have paved the way for the identification of the pathology of ME/CFS and biomarker development by further reporting in several recent research papers that these receptors were faulty from ME/CFS patients when compared to healthy people.

These receptors are widely found in the body and implicated in symptoms and onset of this illness. Importantly, the current groundbreaking research has used Naltrexone to restore the function of these faulty receptors in the immune cells from ME/CFS patients.

“This world-first discovery suggests new potential pharmaco-therapeutic interventions in ME/CFS,” co-author and Stafford Fox Medical Research Professorial Fellow, Professor Sonya Marshall-Gradisnik said.

“We continue to confirm the pathology of these faulty receptors and now we are thrilled we are moving into possible treatments for ME/CFS.”

Dr Helene Cabanas, Post-Doctoral Research Fellow and first author, said: “We used the patch clamp technique to measure the faulty receptor function. Following Naltrexone treatment we found the faulty receptor function was significantly improved in immune cells from ME/CFS patients, suggesting beneficial effects for patients.”

Professor Paul Scuffham, Director of Menzies Health Institute Queensland, said NCNED continued to lead the world in the identification of the pathology of ME/CFS and this latest research signified possible ways forward for the treatment of ME/CFS patients.

“Our aim is to continue employ the gold standard technique to investigate the pathology and possible pharmacological inventions for the benefit of ME/CFs patients,” Professor Marshall-Gradisnik said.

“Our research aims to translate our research findings to benefit ME/CFS patients. The core of NCNED values is patients are our priority.

“We thank the Queensland Government, national granting organisations and our benefactors without whom this groundbreaking research would not be possible.”

Source: Griffith University News.

Insights from metabolites get us closer to a test for chronic fatigue syndrome

Press Release: Columbia University’s Mailman School of Public Health, July 9, 2018. A study led by researchers at the Center for Infection and Immunity (CII) at Columbia University’s Mailman School of Public Health has identified a constellation of metabolites related to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Combining this data with data from an earlier microbiome study, the researchers now report they can predict whether or not someone has the disorder with a confidence of 84 percent.

The research team analyzed blood samples provided by 50 patients with ME/CFS and 50 controls matched for sex and age who were recruited at four clinical sites across the United States. Using mass spectrometry, a laboratory technique used to identify molecules by measuring their mass, the scientists found 562 metabolites — microscopic byproducts of human and microbial processes such as sugar, fat, and protein molecules. They excluded molecules related to antidepressants and other drugs patients might be taking.

Their metabolomics analysis, among the most detailed and meticulous to date, uncovered altered levels of metabolites, including choline, carnitine and several complex lipids present in patients with ME/CFS. The altered metabolites suggest dysfunction of the mitochrondria, the cellular powerplant, a finding in line with those reported by other research teams. Uniquely, the CII study also reports a second distinct pattern of metabolites in patients with ME/CFS and irritable bowel syndrome (IBS), matching earlier findings from their 2017 fecal microbiome study. Half of the patients with ME/CFS also had IBS.

When the researchers combined biomarkers from both the microbiome study and the new metabolome study, they reported a .836 predictive score, indicating an 84 percent certainty as to the presence of ME/CFS — better than with either study alone.

“This is a strong predictive model that suggests we’re getting close to the point where we’ll have lab tests that will allow us to say with a high level of certainty who has this disorder,” says first author Dorottya Nagy-Szakal, MD, PhD, a researcher at CII.

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