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Chronic fatigue is not in your head, it's in your blood
Chronic fatigue is not in your head, it's in your blood

BBC News

time4 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".

New blood test could transform chronic fatigue syndrome diagnosis
New blood test could transform chronic fatigue syndrome diagnosis

The Independent

time6 hours ago

  • Health
  • The Independent

New blood test could transform chronic fatigue syndrome diagnosis

Scientists have identified a potential blood test that could provide the first reliable diagnosis for myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS). Currently, ME is diagnosed by ruling out other illnesses, a lengthy process that can take years for patients. Researchers at the University of Edinburgh compared blood samples from ME patients and healthy individuals, identifying 116 "biomarkers" linked to chronic inflammation, insulin resistance, and liver dysfunction. This breakthrough challenges the perception that ME is psychological, with Professor Chris Ponting stating that evidence is visible in patients' blood. While promising, the research is still in its early stages, and further work is required before a definitive diagnostic test can be guaranteed.

Simple blood test could provide first reliable diagnosis for ME
Simple blood test could provide first reliable diagnosis for ME

Times

time15 hours ago

  • Health
  • Times

Simple blood test could provide first reliable diagnosis for ME

Scientists have found biological signatures in the blood of people with myalgic encephalomyelitis (ME), a breakthrough that could lead to the first reliable test for the debilitating condition. ME, also known as chronic fatigue syndrome (CFS), affects an estimated 400,000 people in the UK. Symptoms can include pain, brain fog and extremely low energy levels that do not improve with rest. These often become dramatically worse after even minor physical effort, a phenomenon known as post-exertional malaise. There is no cure and the cause is unknown. A diagnosis is typically made by ­ruling out other illnesses, a process that can take years. The new study, led by ­researchers from Edinburgh University, may mark a turning point. Using data from the UK Biobank, they compared blood samples from 1,455 ME patients with those of more than 131,000 healthy people and identified dozens of molecules that ­differed in concentrations between the two, as well as different cell counts. The changes in the ME patients, who all had mild to moderate forms of the disease, were largely related to chronic inflammation, insulin resistance and liver dysfunction. The findings were replicated in a group of American patients and healthy controls. Professor Chris Ponting, of the university's Institute of Genetics and Cancer, 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. 'Evidence of a large number of replicated and diverse blood biomarkers that differentiate between ME/CFS cases and controls should dispel any lingering perception it is caused by deconditioning and exercise intolerance.' The study found 116 'biomarkers' for ME in the blood of men and women with the condition — a key finding, because ME can affect the sexes differently. These markers did not change according to how active the patients were, consistent with the view that graded exercise therapy, which aims to gradually increase activity levels, is unlikely to be helpful. The strongest differences were found in people who reported post-exertional malaise, which may underscore its central role in the illness. Dr Sjoerd Beentjes, of the university's School of Mathematics, said: 'Blood differences are sometimes attributed to reduced activity levels rather than ME/CFS directly. Our study provides strong evidence ME/CFS affects blood traits through paths other than activity.' The authors stressed that the research was at an early stage with no guarantees a test would be possible. The government pledged last year to improve ME research and the NHS agreed to assess services for patients across England after an inquest into the death at 27 of Maeve Boothby O'Neill in 2021. She had suffered from ME since she was a teenager. The daughter of Sarah Boothby and Sean O'Neill, a senior journalist at The Times, she was left bedbound, unable to speak and malnourished. The coroner issued a prevention of future deaths report in October, the first of its kind for ME, and urged Wes Streeting, the health secretary, NHS officials and health bodies to take action to address the 'non-existent' care and lack of funding for research.

Over 150k more people in England have ME than previously thought, study finds
Over 150k more people in England have ME than previously thought, study finds

The Guardian

time22-04-2025

  • Health
  • The Guardian

Over 150k more people in England have ME than previously thought, study finds

Over 150,000 more people in England are living with chronic fatigue syndrome (CFS) than was previously estimated, according to a study that highlights the 'postcode lottery' of diagnosis. The research, published in the peer-reviewed journal BMC Public Health, involved researchers from the University of Edinburgh analysing NHS data from over 62 million people in England to identify people who had been diagnosed with myalgic encephalomyelitis (ME)/chronic fatigue syndrome or post-viral fatigue syndrome. The data was examined by gender, age and ethnicity, and grouped it by different areas of England. ME, also known as chronic fatigue, is a long-term condition with its main symptoms being extreme fatigue, brain fog, and issues with sleep. The condition's key feature is known as post-exertional malaise, which is a delayed dramatic worsening of these symptoms following minor physical effort. There is currently no diagnostic test or cure for the disease and its causes are unknown. The findings showed that the lifetime prevalence of chronic fatigue for women and men in England may be as high as 0.92% of the population for women, and 0.25% for men. This is equivalent to about 404,000 people overall. The previous estimate of 250,000 people living with chronic fatigue in England was based on data from the UK Biobank population, which researchers said disproportionately contains more people in better health. The study, funded by the National Institute for Health and Care Research, also revealed stark ethnic inequalities relating to chronic fatigue diagnoses rates. White people with ME in England were almost five times more likely to be diagnosed with the condition than other ethnic groups. People from Black and Asian backgrounds were least likely to be diagnosed with the condition, with rates between 65% and 90% lower than their white counterparts. There were also regional disparities across England, with Cornwall and the Isles of Scilly having the highest rates, while the north-west and north-east London had the lowest. These regional disparities also indicated there was a 'postcode lottery' with regard to the likelihood of receiving a chronic fatigue diagnosis. The study found that of 6,113 large English GP practices, two-thirds had at least eight patients registered as having ME or CFS. However, there were 176 practices – mostly in deprived areas – that had no recorded ME patients. Prof Chris Ponting, study lead at the MRC Human Genetics Unit at the University of Edinburgh's Institute of Genetics and Cancer, said: 'The NHS data shows that getting a diagnosis of ME/CFS in England is a lottery, depending on where you live and your ethnicity. There are nearly 200 GP practices – mostly in deprived areas of the country – that have no recorded ME/CFS patients at all. The data backs up what many people with ME/CFS say: that they feel invisible and ignored.' Gemma Samms, an ME Research UK-funded PhD student, said: 'People struggle to get diagnosed with ME/CFS. Diagnosis is important, because it validates their symptoms and enables them to receive recognition and support. Our results should now lead to improved training of medical professionals and further research into accurate diagnostic tests.' Dr Charles Shepherd, medical advisor at the ME Association, said: 'Over the past year, The ME Association has been discussing with charity colleagues and other organisations how the current estimate of around 250,000 people with ME/CFS is almost certainly an underestimate given the growth in population since this figure was first used and the large number of people who now have post-Covid ME/CFS. 'This new research does now provide some important new evidence that the true figure is around 400,000. Consequently, we will now be discussing with our charity colleagues to see if agreement can be reached on a new prevalence figure based on these research findings.'

ME sufferers 'feel invisible and ignored' as NHS review shows two-thirds more affected
ME sufferers 'feel invisible and ignored' as NHS review shows two-thirds more affected

Daily Mirror

time22-04-2025

  • Health
  • Daily Mirror

ME sufferers 'feel invisible and ignored' as NHS review shows two-thirds more affected

NHS data for England shows middle age women and white people are much more likely to develop devastating myalgic Encephalomyelitis (ME) - otherwise known as Chronic Fatigue Syndrome Two-thirds more people are living with debilitating ME than was previously thought, an NHS review has found. By middle age, women are six times more likely to have developed myalgic Encephalomyelitis (ME) - otherwise known as Chronic Fatigue Syndrome - than men. The little-understood syndrome is the subject of an NHS review following the landmark inquest of Maeve Boothby O'Neill last year. The 27-year-old died unable to speak and malnourished, having begged doctors for help to eat when her body shut down. ‌ A review of NHS data in England indicates that 404,000 people have ME, which can leave sufferers bedbound with extreme fatigue. This is up 62% on the previously accepted figure of 250,000. The analysis by Edinburgh University also found white people are almost five times more likely to be diagnosed than other ethnicities. Study lead Professor Chris Ponting, of the MRC Human Genetics Unit at the university, said: 'The NHS data shows that getting a diagnosis of ME/CFS in England is a lottery, depending on where you live and your ethnicity. There are nearly 200 GP practices – mostly in deprived areas of the country – that have no recorded ME/CFS patients at all. The data backs up what many people with ME/CFS say - that they feel invisible and ignored.' ME sufferers have fought resistance from the medical establishment for decades due to a suspicion that the syndrome may be partly psychological. Symptoms have similarities with Long Covid and some suspect a virus may trigger the disease but scientists still do not know how. The review by Edinburgh University, published in medical journal BMC Public Health, comes after Maeve Boothby O'Neill's death sparked a NHS review of the treatment of ME. Having suffered from ME since she was a teenager, by her mid-20s Maeve was left bedbound, unable to speak and malnourished. She begged for help to eat but doctors were unable to treat her illness. She chose to leave hospital and die in her home "in the care of those she loved" in 2021. ‌ Last October the coroner looking into the death Deborah Archer issued the first ever 'prevention of future deaths report' for ME. She called on Health Secretary Wes Streeting and the NHS to take urgent action to address the "non-existent" care for ME and lack of funding for research. ME's key feature is called 'post-exertional malaise' and is a delayed dramatic worsening of symptoms following minor physical effort, such as a walk to the shops. Other symptoms include pain, brain fog and extreme energy limitation that does not improve with rest. Causes are unknown and there is currently no diagnostic test or cure. The analysis of NHS data from 62 million people in England found that lifetime chances of developing ME are up to 0.92% for women and 0.25% for men. Previous lower estimates came from the UK Biobank research project which contains disproportionately more people who are in better health. ‌ Prevalence varied across England with Cornwall and the Isles of Scilly having the highest rates, while North West and North East London reported the lowest. The condition peaked around the age of 50 for women and a decade later for men. Women are six times more likely to have it than men by middle age. Researcher Gemma Samms, ME Research UK-funded PhD student, said: 'People struggle to get diagnosed with ME/CFS. Diagnosis is important, because it validates their symptoms and enables them to receive recognition and support. Our results should now lead to improved training of medical professionals and further research into accurate diagnostic tests.' The NHS last year announced an assessment of myalgic encephalomyelitis (ME) services across England after the death of Maeve Boothby O'Neill The National Institute for Health and Care Excellence (Nice), which provides advice to improve healthcare, is also re-examining its guidance on feeding support for people with severe ME. Education of medical professionals about patients is also being ramped up. Andrew Gwynne, the health minister, had pledged to improve research "with the aim of better understanding the causes, identifying new treatments and improving patient outcomes". The new study was funded by the Government-backed National Institute for Health and Care Research, the Medical Research Council and the charity ME Research UK.

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