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Abstract: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex disease characterized by profound fatigue, post-exertional malaise (PEM), and neurocognitive dysfunction. Immune dysregulation and gastrointestinal symptoms are commonly observed in ME/CFS patients. Despite affecting approximately 0.89% of the general population, the underlying pathophysiological mechanisms remain poorly understood. This study aimed to elucidate the relationship between immunological characteristics and intestinal barrier function in ME/CFS patients. ME/CFS patients were stratified into two groups based on their immune competence. After documentation of detailed medical records, serum and plasma samples were collected for the assessment of inflammatory immune mediators and biomarkers for intestinal barrier integrity by ELISA. We found reduced complement protein C4a levels in immunodeficient ME/CFS patients suggesting a subgroup-specific innate immune dysregulation. ME/CFS patients without immunodeficiencies exhibit a mucosal barrier leakage, as indicated by elevated levels of Lipopolysaccharide-binding protein (LBP). Stratifying ME/CFS patients based on immune competence enabled the distinction of two subgroups with different pathophysiological patterns. The study highlights the importance of emphasizing precise patient stratification in ME/CFS, particularly in the context of defining suitable treatment strategies. Given the substantial health and socioeconomic burden associated with ME/CFS, urgent attention and research efforts are needed to define causative treatment approaches.

In 2019, Professor Ron Davis from America reported that researchers had developed a nanoelectronics test that could detect an impedance in white blood cells taken from people with ME/CFS1.

They felt their findings could represent a diagnostic marker, but since then there hasn’t been any further research in this area. ME Research UK and the ME Association have jointly funded a new 12-month study that will build upon these initial findings.

The research grant has been awarded to Professor Robert Dorey, Dr Fatima Labeed and Professor Michael Hughes from the Centre for Biomedical Engineering at the University of Surrey, and Dr Eliana Lacerda and Caroline Kingdon from the London School of Hygiene and Tropical Medicine and the UK ME/CFS Biobank.

The UK researchers have already used a more robust approach to identify statistically significant differences between the electrical properties in blood from people with ME/CFS compared to healthy and multiple sclerosis (MS) controls (using samples from the UK ME/CFS Biobank).

Their preliminary work suggests that the 2019 results from America are repeatable and can be explored in more detail. Furthermore, that they have the potential to be used as a routine diagnostic test.

(More in link)

The 1st International Conference on Clinical and Scientific Advances in ME/CFS and Long COVID aims to raise awareness, clarify misconceptions, promote understanding, and stimulate discussion among healthcare professionals, investigators, policymakers, patients, and community representatives on the clinical manifestations, management, therapeutic options, and health challenges related to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long COVID.

The incidence of ME/CFS continues to rise globally, in the aftermath of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infections and Long COVID, increasing the need for informed diagnosis and treatment. Emerging evidence reveals many shared underlying biological abnormalities and symptoms reported in both illnesses, documented by multiple laboratories. This underscores the importance of sustained medical education and regular updates on research, diagnostic, and treatment guidelines.

The program will feature state-of-the-art lectures, and interactive sessions designed to address the educational needs of Portuguese healthcare professionals and health system capacity. It offers dedicated time for discussions to enhance knowledge exchange and reinforce the implementation of guidelines and recommendations.

The conference will take place on April 3 and 4, 2024, in Lisbon, at the premises of FLAD – Luso-American Development Foundation. You can attend in person (places are limited) or participate online via streaming.

Mitochondria retain bacterial traits due to their endosymbiotic origin, but host cells do not recognize them as foreign because the organelles are sequestered. However, the regulated release of mitochondrial factors into the cytosol can trigger cell death, innate immunity and inflammation. This selective breakdown in the 2-billion-year-old endosymbiotic relationship enables mitochondria to act as intracellular signalling hubs. Mitochondrial signals include proteins, nucleic acids, phospholipids, metabolites and reactive oxygen species, which have many modes of release from mitochondria, and of decoding in the cytosol and nucleus. Because these mitochondrial signals probably contribute to the homeostatic role of inflammation, dysregulation of these processes may lead to autoimmune and inflammatory diseases. A potential reason for the increased incidence of these diseases may be changes in mitochondrial function and signalling in response to such recent phenomena as obesity, dietary changes and other environmental factors. Focusing on the mixed heritage of mitochondria therefore leads to predictions for future insights, research paths and therapeutic opportunities. Thus, whereas mitochondria can be considered 'the enemy within' the cell, evolution has used this strained relationship in intriguing ways, with increasing evidence pointing to the recent failure of endosymbiosis being critical for the pathogenesis of inflammatory diseases.

© 2024. Springer Nature Limited.

Summary:

• Small proof of concept study

• Patient cohort had long covid

• Ampligen well tolerated

• Ampligen reduced fatigue more than placebo at some points in the 13 week study

• Full press release in [the link(https://aimimmuno.com/aim-immunotech-reports-positive-topline-results-from-phase-2-study-evaluating-ampligen-for-the-treatment-of-post-covid-conditions/).

IntroductionDisturbances of energy metabolism contribute to the clinical manifestations of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Previously, we found that B cells from ME/CFS patients have an increased expression of CD24, a modulator of many cellular functions including those of cell stress. The relative ability of B cells from ME/CFS patients and healthy controls (HC) to respond to rapid changes in energy demand was compared.MethodsCD24, the ectonucleotidases CD39 and CD73, the NAD-degrading enzyme CD38, and mitochondrial mass (MM) were measured following cross-linking of the B cell receptor and costimulation with either T-cell-dependent or Toll-like-receptor-9-dependent agonists. The levels of metabolites consumed/produced were measured using 1H-NMR spectroscopy and analyzed in relation to cell growth and immunophenotype.ResultsProliferating B cells from patients with ME/CFS showed a lower mitochondrial mass and a significantly increased usage of essential amino acids compared with those from HC, with a significantly delayed loss of CD24 and an increased expression of CD38 following stimulation.DiscussionThe immunophenotype results suggested the triggering of a stress response in ME/CFS B cells associated with the increased usage of additional substrates to maintain necessary ATP levels. Disturbances in energy metabolism in ME/CFS B cells were thus confirmed in a dynamic in vitro model, providing the basis for further mechanistic investigations.

MEAction is thrilled, once again, to partner with Shannon Williams-Bramburger of Nourish Therapeutic Yoga to provide a 30 minute, virtual very modified movement class on Thursday, Feb 8th at 11am PT/2pm ET/7pm BST that has been crafted specifically for people with ME. The whole class will be lying down and can be done from bed.

What to expect in this 30 minute class:
5-10 min. Breathing Exercises & Grounding
10-15 min. Gentle Movement with Breath
10 min. Guided Relaxation Meditation

-This class is free to attend-

There is an option to stay at the end of class for an additional 30 minute Community Chat. This gives the opportunity for you to ask questions and engage in a positive, supportive community with others who “get it.” If you are not able to attend the class in-person, the class will be recorded and shared at a later date.

Register for the class here: https://momence.com/Nourish-Therapeutic-Yoga/%23MEACTION%3A-FREE-Community-Yoga-Class-/98822140

A much-touted study recommended therapy and gradually increasing exercise for patients with chronic fatigue syndrome. Problem is, it was based on bad science.

Health officials are releasing the first nationally representative estimate of how many U.S. adults have chronic fatigue syndrome: 3.3 million.

Women and people with lower incomes are among those more likely to suffer from a debilitating illness that’s gained attention since the COVID-19 pandemic, survey data shows.

National Center for Health Statistics: Data from the National Health Interview Survey

In 2021–2022, 1.3% of adults had myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
The percentage of adults who had ME/CFS increased with age through ages 60–69 and then declined among those age 70 and older.
White non-Hispanic (1.5%) adults were more likely to have ME/CFS compared with Asian non-Hispanic (0.7%) and Hispanic (0.8%) adults.
Adults with a family income less than 100% of the federal poverty level (2.0%) were more likely to have ME/CFS, followed by those at 100–199% (1.7%), and those at or above 200% (1.1%).
The percentage of adults who had ME/CFS increased with increasing rurality of their place of residence.

By David Tuller, DrPH. Time magazine recently published an opinion piece that calls for an end to biomedical research for long Covid—based, it seems, on what the authors view as the ME/CFS precedent. The title: “How to End the Futile Blame Game Over Failed Long COVID Research.” Although research still has “a vital role” to play, they argue, it needs to be “a different kind” that “no longer focuses on biomarkers and mechanisms” because such studies “are sure to provide ‘promising’ but false leads and divert resources.” (The piece was adapted from a recent article that was published by STAT.)

via @ahimsa_pdx