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BBC News
9 hours ago
- Health
- BBC News
Chronic fatigue is not in your head, it's in your blood
People with ME and chronic fatigue syndrome have major differences in their blood compared with healthy individuals, experts have of Edinburgh researchers said their findings could pave the way for a "game-changer" diagnostic Chris Ponting said: "For so long people with ME/CFS have been told it's all in their head. It's not. We see it in their blood."The study used data from the UK Biobank – a health database of over half a million people – to compare 1,455 ME/CFS patients with 131,000 healthy individuals. The research showed the results were mostly unaffected by activity university team said the volume and consistency of the blood differences support their long-term goal of developing a diagnostic blood Dr Sjoerd Beentjes told BBC Radio's Good Morning Scotland: "One thing that our evidence points at is that ME is very much a condition in the blood."Perhaps previously held perspectives are not quite the case."It is really not due to inactivity and we hope that this helps with problems where individuals are disbelieved of their symptoms." What are the symptoms of ME? The largest ever biological study of ME/CFS - which is estimated to affect 50,000 people in Scotland - identified consistent blood differences associated with chronic inflammation, insulin resistance, and liver main feature of the condition is post-exertional malaise (PEM) - a delayed and dramatic worsening of fatigue that comes after minor physical symptoms include pain, brain fog and tiredness that does not improve with rest. Causes are unknown and there is currently no diagnostic test or Beentjes also said ME was a "female bias" condition with the ratio of patients estimated to be 3:1. The Edinburgh researchers examined more than 3,000 blood-based biomarkers and accounted for differences in age, sex, and activity results were replicated afterwards using data from the US Prof Chris Ponting, of the university's MRC human genetics unit, said: "For so long people with ME/CFS have been told it's all in their head. "It's not. We see people's ME/CFS in their said the evidence should "dispel any lingering perception that ME/CFS is caused by deconditioning and exercise intolerance".
Irish Times
04-06-2025
- 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.'
