Latest news with #myalgicencephalomyelitis
Times
29-06-2025
- Health
- Times
Third delay to ME care plan prompts backlash from patients
Health ministers have delayed a plan for the future treatment of the debilitating condition myalgic encephalomyelitis (ME) for the third time in nine months. Work on the ME Delivery Plan — which the government claims will boost research, advance medical education and improve patients' lives — began more than three years ago under the Conservative health secretary, Sajid Javid. Labour ministers have repeatedly pledged to publish the plan and have yet to explain why it has been delayed. Last October the public health minister at the time, Andrew Gwynne, said the government planned to publish 'in the winter of 2024/25'. In December, responding to the inquest into the death of the ME patient, Maeve Boothby O'Neill, 27, the minister told a coroner 'we aim to publish by the end of March'. On June 5, Gwynne's successor, Ashley Dalton, said it was 'a priority for the department to publish the final ME delivery plan by the end of June 2025'. On Saturday, however, a health department spokesperson would only say the plan would be published 'shortly'. ME, also known as chronic fatigue syndrome (CFS) affects at least 400,000 people in England and Wales. Many people with long Covid experience similar symptoms. The illness is characterised by extreme fatigue, disturbed sleep that does not bring rest and a flare-up of symptoms after even mild exertion (known as post exertional malaise). It is usually triggered by a viral infection and there is no proven cure or treatment. About 25 per cent of sufferers become severely ill with many housebound or bedbound. In a small number of cases patients die. The Times understands the ME initiative has been put on the back burner because the health secretary, Wes Streeting, is determined that nothing should distract from the promotion of his ten-year plan for the NHS. In a further blow to the hopes of ME patients, Streeting has also ruled out any new money for the delivery plan and rejected appeals for a ring-fenced fund to advance ME research. The plea for a specific funding resource was made in a letter signed by all 72 Liberal Democrat MPs. But the health secretary has written back saying ring fencing ME funding 'goes against our commitment to open competition to ensure transparency and scientific excellence'. His statement appears to contradict previous government awards such as the £50 million five-year commitment made in 2021 to finance research into Motor Neurone Disease while last year the National Institute for Health and Care Research (NIHR) called for proposals to address 'evidence gaps in liver disease research'. The NIHR is also running an 'open call' for a five-year research consortium to prevent cardiovascular disease. ME campaigners had lobbied for a similar scheme to build a research network and are surprised by Streeting's response. Helen Morgan, the Liberal Democrat health spokesperson, said people with ME and their carers had been left behind for decades. 'They have faced inadequate care, scant research funding, no treatments and little hope of a better future,' she said. 'Further delay to the Delivery Plan for ME is inexcusable. People with ME are right to feel that improving this situation is not a priority for this government. The government must think again, publish the plan without delay and allocate it the resources it needs to make a real difference.' • Severely ill patient with ME begs for home feeding Sonya Chowdhury, of the charity Action for ME, said she was 'deeply dismayed' by another delay to the delivery plan: 'Just weeks ago, the minister gave a public commitment that the plan would be published by the end of June. This is now the third delay in nine months, and the government's language around publication has become increasingly vague. 'The ME community is once again left in the dark — with no clear timeline, no explanation, and growing doubt over whether the plan will appear at all. What message does this send to a group already fighting for basic recognition, where the most severely affected are so often the most neglected?' A Department of Health and Social Care spokesperson said: 'Our thoughts are with all those whose lives have been touched by myalgic encephalomyelitis/chronic fatigue syndrome. We are committed to improving the care and support for all those affected and will publish a final delivery plan shortly.'
Yahoo
20-06-2025
- Health
- Yahoo
A simple blood test could offer first reliable diagnosis for ME
A simple blood test could provide the first reliable diagnosis for myalgic encephalomyelitis (ME) and end the lengthy process of trying to identify the debilitating condition, scientists have found. It's thought more than 400,000 people in the UK suffer with the condition, also known as chronic fatigue syndrome (CFS). Pain, brain fog and extreme low energy that does not improve with sleep are just some of the symptoms of ME. There is no cure and the cause is unknown. Currently the only way to diagnose it is by ruling out other illnesses – a long process that can mean patients wait years for a diagnosis. However, researchers at the University of Edinburgh believe they have made a breakthrough. The study published in the Journal EMBO Molecular Medicine used data from the UK Biobank – a large-scale resource based on the health data and biological samples of 500,000 UK participants. Researchers compared blood samples from 1,455 ME patients with more than 131,000 healthy people. They identified differences in cell counts and molecules that differed in concentrations between the two. The differences in samples for the ME patients were related to chronic inflammation, insulin resistance and liver dysfunction. These findings were compared and replicated in data from a group of American patients and healthy controls. Researchers found 116 'biomarkers' for ME in the blood of men and women with the condition. This is a key finding because the condition affects men and women differently. 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.' These biomarkers did not change when the participants were any more active – consistent with the view graded exercise therapy, which aims to gradually increase activity levels, is unlikely to be helpful. In fact, the largest differences were seen in people who reported post-exertional malaise. This is when the symptoms of the condition become worse even after minor physical effort. 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.' However, this research is still at an early stage and there is no guarantee a test will be possible, study authors stressed. Professor Kevin McConway, Emeritus Professor of Applied Statistics, Open University, who was not part of the study, said: 'There is a lot more to do.' 'These findings could help in finding a set of blood biomarkers that can reasonably reliably distinguish people with ME/CFS from those who do not have that condition, but that, without a lot of further work, the findings do not in themselves provide such a set of biomarkers,' he added.
The Independent
20-06-2025
- 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.
The Independent
20-06-2025
- Health
- The Independent
A simple blood test could offer first reliable diagnosis for ME
A simple blood test could provide the first reliable diagnosis for myalgic encephalomyelitis (ME) and end the lengthy process of trying to identify the debilitating condition, scientists have found. It's thought more than 400,000 people in the UK suffer with the condition, also known as chronic fatigue syndrome (CFS). Pain, brain fog and extreme low energy that does not improve with sleep are just some of the symptoms of ME. There is no cure and the cause is unknown. Currently the only way to diagnose it is by ruling out other illnesses – a long process that can mean patients wait years for a diagnosis. However, researchers at the University of Edinburgh believe they have made a breakthrough. The study published in the Journal EMBO Molecular Medicine used data from the UK Biobank – a large-scale resource based on the health data and biological samples of 500,000 UK participants. Researchers compared blood samples from 1,455 ME patients with more than 131,000 healthy people. They identified differences in cell counts and molecules that differed in concentrations between the two. The differences in samples for the ME patients were related to chronic inflammation, insulin resistance and liver dysfunction. These findings were compared and replicated in data from a group of American patients and healthy controls. Researchers found 116 'biomarkers' for ME in the blood of men and women with the condition. This is a key finding because the condition affects men and women differently. 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.' These biomarkers did not change when the participants were any more active – consistent with the view graded exercise therapy, which aims to gradually increase activity levels, is unlikely to be helpful. In fact, the largest differences were seen in people who reported post-exertional malaise. This is when the symptoms of the condition become worse even after minor physical effort. 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.' However, this research is still at an early stage and there is no guarantee a test will be possible, study authors stressed. Professor Kevin McConway, Emeritus Professor of Applied Statistics, Open University, who was not part of the study, said: 'There is a lot more to do.' 'These findings could help in finding a set of blood biomarkers that can reasonably reliably distinguish people with ME/CFS from those who do not have that condition, but that, without a lot of further work, the findings do not in themselves provide such a set of biomarkers,' he added.
Times
20-06-2025
- 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.
