Latest news with #MyalgicEncephalomyelitis
Irish Times
3 days ago
- Health
- Irish Times
ME/CFS: is there a comprehensive explanation for this long-misunderstood illness?
In 1955, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) affected more than 300 people at London's Royal Free hospital. In 1970, a study attributed the outbreak to 'mass hysteria', from which the 'it's in your head' dogma of ME developed. However, in 2006, Dr Byron Hyde revealed the 1970 study as 'totally bogus research'. And, in 2015, Prof Betsy Keller of the Department of Exercise & Sports Sciences at New York's Ithaca College observed that , given all that had been learned about this condition, 'it is intellectually embarrassing to suggest that ME is a psychological illness'. By 2021, others had reduced ME's psychological dogma to ashes, citing research showing autoimmunity, a low circulating blood volume and the abnormal function of biopsied muscle fibres. Now, in his book, Understanding ME/CFS & Strategies for Healing (2025), Irish author Patrick Ussher not only adds compelling insights to the burgeoning evidence base for ME's physical origins, but also outlines a unifying model for ME, highlighting research towards possible effective treatment. READ MORE The 36-year-old told The Irish Times that, before his ME diagnosis in 2018, 'I was a PhD student working on Stoic ethics and a composer of contemporary classical music'. [ My battle with Long Covid: I was in disbelief. Was I making it up? How could I not stand up while the kettle boiled? Opens in new window ] How did he address this daunting health challenge? 'Initially,' he says, 'I was almost totally in the dark about ME. Plenty of research exists, but very little is taught to doctors, which left me navigating the ME landscape alone. But I undertook to read and understand the latest research.' Ussher's philosophical background may have enriched his understanding of ME-related science, echoing philosopher Mary Midgley who, in her 1992 book, Science and Salvation, noted that increasing scientific specialisation means that mental maps 'are required to show fine detail correctly, less and less are they designed to show the whole territory needed for actual journeys'. But Ussher's diligence was rewarded when the evolving mental map of his life-changing illness afforded him a glimpse of 'the whole territory' in August 2021: 'That's when I encountered the research of German professors, pharmacologist Klaus Wirth and immunologist/ME researcher Carmen Scheibenbogen. They've mapped out a ' unifying model' of ME , ( A Unifying Hypothesis of the Pathophysiology of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) which makes sense of the interrelationship of the most important pre-existing findings, joining up the dots and demystifying the condition." [ Chronic fatigue syndrome: 'It was like a switch had been flipped. I couldn't stand up' Opens in new window ] He adds: 'For ME to make sense as an illness, it cannot be random: it must follow certain physiological laws.' These physiological laws inform the evolution of Wirth and Scheibenbogen's unifying model hypothesis, which inter alia considers a key role for autoantibodies against blood flow-related cellular receptors in skeletal muscle and the brain; the mechanisms by which ME patients develop low blood volume and systemic blood hypoperfusion (a reduced amount of blood flow); and the contribution of high muscle sodium and calcium concentrations to mitochondrial dysfunction and muscle-tissue necrosis. The refinement of Wirth and Scheibenbogen's unifying model hypothesis has led to a therapeutic concept: a drug called Mitodicure, which is 'a novel molecule to treat patients with exertional intolerance and post-exertional malaise (PEM)'. Steps are under way to attract funding for clinical trials. Mitodicure, says Ussher, 'could represent the long-awaited breakthrough treatment for ME and Long Covid. Its mechanism of action will interrupt several key vicious cycles at once, particularly targeting the mechanisms underlying PEM. 'During symptom exacerbations of PEM,' he explains, 'most illness mechanisms heighten and intensify. By preventing PEM, Mitodicure could relieve physiological burdens, enabling the body to concentrate its resources on healing. 'Mitodicure is not symptom suppression,' Ussher emphasises, 'Prof Wirth considers Mitodicure to represent a potential cure for these illnesses.' Cautiously optimistic, Ussher suggests that Mitodicure could demystify ME: 'If you have a therapeutic based on a certain disease model and it works as hypothesised, the disease model is also validated. The pill can prove the principle. So Mitodicure could offer not only improved quality of life (or better) but could also advance our understanding of ME.' Although Ussher's enthusiasm is tempered with an acute awareness of the need for scientific rigour, his approach to science appears sceptical towards the exalted status of stored facts and may align with Mary Midgley's view that stored facts are 'valueless unless you know how to use them, how to connect them with other things, how to understand them'. Ussher's book represents an interpretative scheme; a vehicle, as he puts it, 'for raising awareness of Wirth and Scheibenbogen's 'unifying model' of ME and the potential Mitodicure pill which is based on it'. [ My daily routine living with . . . chronic fatigue syndrome Opens in new window ] He wants patients and other interested parties to know that there is a comprehensive explanation for this long-misunderstood illness and that 'we urgently need investors to fund Mitodicure. The stakes are too high for trials not to happen. 'Millions worldwide need help now, especially as ME is one of the severest outcomes of Long Covid , and the recent pandemic has resulted in countless more suffering from this disease.' Some might ascribe Ussher's determination to make progress against the ravages of ME to the Stoic philosophy that he espouses. However, 'The most important influence has been my late mum, Mary Redmond . Her journey with cancer, encapsulated in her book, The Pink Ribbon Path, has given me a path to follow now, albeit imperfectly. 'Equally important to me was her work in founding The Irish Hospice Foundation. She fought for the marginalised in her life. I am trying to do the same.'
Forbes
7 days ago
- General
- Forbes
How Does Long Covid Manifest In Infants And Young Children?
Washington DC, USA- September 19: Protestors lay down outside the White House to call attention to ... More those suffering from Myalgic Encephalomyelitis and âlong Covidâ on September 19th, 2022 in Washington, DC. (Photo by Nathan Posner/Anadolu Agency via Getty Images) Long Covid symptoms are completely different in infants and toddlers, a recent JAMA Pediatrics study found. While infants and toddlers between the ages of 0 to 2 years are more likely to experience a stuffy nose, cough, poor appetite, fussiness, and sleep problems, children between the ages of 3 to 5 years mainly complain of sleepiness, feeling tired during daytime, low energy and dry cough. The study included 472 infants and toddlers, out of which 278 tested positive for Covid-19 and another 539 preschool-aged children. In this age group, 399 had been infected with the coronavirus. 'Studying long Covid in early childhood presents unique challenges due to rapid developmental changes and limited verbal communication, requiring caregivers to observe, identify, and interpret symptoms,' the researchers wrote in the study. 'These challenges have limited the understanding of symptom profiles in young children. Most long Covid studies that involve young children, including controlled studies, either do not report age-specific subgroup analyses or young children are not well represented.' 'Other Covid-19 studies have focused on SARS-CoV-2 exposure during pregnancy and offspring outcomes, with mixed findings related to birth defects, prematurity, and delayed developmental milestones. However, incomplete knowledge of prolonged symptoms experienced after a young child's own SARS-CoV-2 infection hinders prevention and treatment of LC in infants, toddlers, and preschool-aged children. This is a substantial gap, given that early childhood is a critical period in setting lifelong health trajectories,' they added. The researchers observed that 114 of the 278 infants/toddlers with a history of a Covid-19 infection and 49 of 194 infants or toddlers who did not get infected had at least one prolonged symptom. Whereas 45% of children who had Covid-19 and 37% who did not test positive reported at least one prolonged symptom. Among children, the most common symptom was dry cough (74%), followed by tiredness and daytime sleepiness (33%). "The findings that infants/toddlers and preschool-aged children have varied symptoms may be explained by the fact that symptoms in younger children are reported based on what caregivers can observe rather than what the children themselves are feeling and describing because most children in this age group do not yet have the language, social skills, or understanding of symptoms to share what they are experiencing," the researchers explained. "For example, fears and feelings of pain, brain fog, headache, tiredness, or changes in taste and smell may be hard to identify if the child cannot verbalize their internal feelings or sensations, whereas a symptom such as a cough is easily observed," they added. "A further complication is that the identified symptoms may occur commonly in young children because of their naive immune systems. Daytime sleepiness, trouble sleeping, cough, stuffy nose, and poor appetite can occur in many acute and chronic early childhood illnesses." A 2021 study published in Frontiers in Pediatrics compared the long Covid symptoms of children of all age groups including newborn infants to 18-year-olds, and observed that persistent post-viral symptoms were significantly more common after a Covid-19 infection. The most common symptoms were fatigue, irritability and mood changes, headaches, runny nose, cough, and loss of smell and taste.
Otago Daily Times
17-05-2025
- Health
- Otago Daily Times
Study provides data on life with ME
A new study examining the challenges faced by people with chronic illness highlights areas for improvement. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a long-term illness that can make everyday activities very difficult for those living with it. New research using anonymised government records in Stats NZ's Integrated Data Infrastructure reveals what life is like for people with ME/CFS. The study identified 1902 working-age New Zealanders with ME/CFS who were receiving a benefit and compared their experiences with those not receiving one. Principal investigator University of Otago department of paediatrics and child health senior research fellow Dr Nicholas Bowden said people with ME/CFS used health services far more often. In the past year, 18.8% had visited an emergency department, compared with 12.8% of the general population, and 32.8% had been dispensed 10 or more medications, compared with 14.2%. The study also hinted at diagnostic inequity because Māori and Pasifika were under-represented. "It is certainly not consistent with the general trends of benefit use in the population. "So a low percent of Māori, low percent of Pasifika in this ME group on a benefit is very different to the distribution of ethnicity among that other benefit group. "There is some evidence around access and equities of access to diagnosis." Long-term data on employment, unemployment and benefit reliance showed how debilitating the condition was, he said. Only 18.3% of people with ME/CFS were employed, compared with 83.8% of the general population. Even when looking back one, two or five years, about half of those affected had earned no labour-market income in the preceding five years. "And that's quite a lot higher than the other comparison benefit groups." Co-investigator University of Otago department of biochemistry emeritus professor Warren Tate said the research added weight to discussions with government ministries. He has more than 30 years of experience with the conditions, both as a biomedical researcher and as someone whose family members have lived with ME. "I've done a lot of research now and published internationally on it. "So what I knew was that there were high health needs." However, data from New Zealand suggesting limited access to support services and very low employment was all anecdotal. "There was no data to support that and that made it very difficult for the ME community to argue with the ministry and areas of government to try and get better support." The study supported efforts to secure better access and greater understanding of the challenges posed by the conditions. Dr Bowden noted the population-level data used in the study was the government's own. "They are pretty hard for the government to turn a blind eye to." The research was funded by a grant from the Associated New Zealand Myalgic Encephalomyelitis Society. The study is now under peer review at BMC Public Health.
News18
14-05-2025
- Health
- News18
What Is Chronic Fatigue Syndrome In India, What's The Approach For Effective Treatment? Explained
Last Updated: Characterised by extreme fatigue that could last for six months, women are more likely than men to get diagnosed with CFS. Symptoms include brain fog, headaches, sore throat Feeling overtired and extreme lack of energy for weeks? You could be suffering from chronic fatigue syndrome (CFS), also known as, Myalgic Encephalomyelitis (ME). Characterised by extreme fatigue that could last for six months, CFS remains poorly understood in Indian context, where research and awareness are limited. While anyone can be affected by the syndrome, but women are more frequently diagnosed with it. What Is Chronic Fatigue Syndrome? The CFS can be complicated, with extreme fatigue in a person that lasts for at least six months and cannot be fully explained by any underlying medical condition. According to doctors, fatigue worsens with physical or mental activity in people who suffer from this condition, but it doesn't improve with rest. Most recently, the condition is termed systemic exertional intolerance disease (SEID). 'We don't see it daily. In the case of chronic fatigue syndrome, it is like a diagnosis of exclusion. We exclude all other diseases and then, at last, when we don't know where to place the patient, that is when we call it chronic fatigue syndrome," she explains. According to doctors, most forms of fatigue encountered have identifiable causes such as diabetes, cardiac conditions, cancer, to even side-effects of medications such as antibiotics. Bu there is no single test to diagnose CFS. There is a need to conduct a variety of medical tests to rule out other health problems that have similar symptoms. Additionally, the treatment focuses on improving symptoms. Due to this lack of tests, doctors often have a hard time describing this disease. This extreme exhaustion affects women twice to four times as often as men, according to several studies. It affects individuals who show no signs of thyroid dysfunction, cardiac conditions, or diabetes. Some experts have also found viral infections to be the known triggers. Viruses such as the Epstein-Barr virus, cytomegalovirus, other herpes group infections and long Covid have been known to act as triggers, as per a Hindu report. However, what causes this unknown condition that typically affects women between the ages of 25 to 45 years is still not known. Health experts maintain that it can affect adolescents and children as well. The Center for Disease Control (CDC) estimates that 836,000 to 2.5 million Americans suffer from CFS. However, the majority of them are undiagnosed. Reportedly, the United States loses between US$9 to 25 billion each year in reduced productivity and medical expenses due to CFS. However, statistics on this condition in India are limited. What Does The WHO Say? According to the World Health Organization (WHO), CFS is primarily considered a neurological disorder, as it involves abnormalities in brain function and the nervous system, particularly in the regulation of neurochemicals that influence energy, pain tolerance, and mood. In India, the condition often goes underdiagnosed or misattributed to lifestyle factors, nutritional deficiencies like vitamin B12 or iron, or even psychiatric issues due to a lack of widespread awareness and limited dedicated programmes or policies. Despite being a significant problem, CFS is not yet a public health priority in India, though awareness has started rising after the Covid-19, especially in urban areas. What Are The Symptoms? People suffering from this condition can have a hard time doing very basic physical acts. According to doctors, chronic fatigue syndrome usually has the most common symptom of fatigue, especially after physical or mental exercise. When a person suffers from CFS, they feel very tired and exhausted symptoms persist for more than six months. There are also symptoms like memory issues and brain fog, headaches, sore throat, enlarged lymph nodes in the neck and armpits, and muscle and joint pains. There are difficulties in focus and also dizziness while getting up from lying down or sitting. Moreover, the diseases which cause similar symptoms like anaemia, diabetes, and thyroid diseases are ruled out by the doctor before labeling a person as CFS. Some diseases like fibromyalgia, irritable bowel syndrome, depression, and sleep disorders may coexist with CFS. CFS can lead to sleep disorders where a person feels sleep all the time but is unable to sleep and does not feel fresh after a sleep. He could experience intense and vivid dreaming, restlessness, night-time muscle spasm and sleep apnea. They can also experience gastrointestinal problems, nightsweats, muscle weakness, shortness of breath, anxiety or panic attacks and low-grade fever. Diagnosis And Treatment There is a lack of specific tests for diagnosing CFS, which has forced patients to remain untreated and live with pain for years. There are instances in which a doctor has witnessed only 4-5 cases of CFS in a decade in India. According to doctors and health experts, there is no specific cure or treatment for CFS. However, symptoms that are most problematic are addressed first. A report by The Financial Express said in order to diagnose CFS symptoms of chronic fatigue are important. And that sleep does not relieve the symptom of fatigue; different body aches and pain are there that are not explained by any other health condition. Thus, treatment such as psychological counselling, adequate health supplements such as vitamin E, and vitamin D sometimes help to overcome the weakness and improve overall well-being. A good, healthy diet and regular physical exercise, yoga, and meditation can also help the patient to come out of the chronic fatigue syndrome. Since the causes of CFS are still unknown, it is difficult to prevent. tags : fatigue mental health News18 Explains Location : New Delhi, India, India First Published: May 14, 2025, 16:25 IST News explainers What Is Chronic Fatigue Syndrome In India, What's The Approach For Effective Treatment? Explained
News18
14-05-2025
- Health
- News18
Chronic Fatigue Syndrome Vs Regular Tiredness: What Makes It A Serious Medical Condition
Last Updated: Unlike tiredness, chronic fatigue syndrome affects multiple systems in the body, often following an infection, trauma, or period of significant stress. Everyone experiences fatigue from time to time – whether it's due to a sleepless night, a high-pressure week at work, or an emotional burnout. But for those living with chronic fatigue syndrome (CFS), also known as Myalgic Encephalomyelitis (ME), exhaustion goes far beyond everyday tiredness. It's a persistent, life-altering condition that affects physical, mental, and emotional well-being, often leaving individuals struggling to carry out even the simplest daily tasks. Understanding the difference between everyday fatigue and this misunderstood disorder is the first step toward greater empathy and support. CFS is not just about feeling weary. It is a complex, long-term illness that affects multiple systems in the body, often following an infection, trauma, or period of significant stress. People with CFS experience profound, unrelenting fatigue that does not improve with rest. More importantly, this fatigue worsens after physical or mental exertion – a symptom known as post-exertional malaise (PEM). Dr. Anubhav Bhushan Dua, Consultant, Mental Health & Behavioural Sciences, (Psychiatry), Max Super Speciality Hospital, Vaishali says, 'While a good sleep or weekend off may help the average person recover from tiredness, someone with CFS may wake up feeling not better, even after a full night's rest. Their fatigue can be so severe that it interferes with everyday activities – working, studying, socialising, or even basic self-care. Other common symptoms include cognitive dysfunction (often referred to as 'brain fog"), unrefreshing sleep, muscle or joint pain, headaches, dizziness, and irregular heart rhythms." Another critical difference lies in diagnosis and duration. Feeling tired is usually temporary and linked to a clear cause, such as lack of sleep or overwork. Dr Dua adds, 'In contrast, CFS is diagnosed when fatigue persists for six months or longer and is accompanied by other symptoms, with no identifiable medical explanation." The challenge with CFS is that it remains an invisible illness. Many sufferers look 'normal' from the outside, often leading to misunderstanding, scepticism, and a lack of support. This stigma can make the condition even harder to bear. First Published: May 14, 2025, 15:02 IST
