Latest news with #chronicfatiguesyndrome
Times
17 hours ago
- Health
- Times
Doctors to be trained on ME in NHS plan to transform care
Doctors will be trained in dealing with myalgic encephalomyelitis (ME), under a government plan aimed at ensuring there are no more 'tragically avoidable deaths' from the condition. The Department of Health and Social Care has announced that medical students and NHS staff will be offered training modules in how to diagnose, manage and treat ME/chronic fatigue syndrome (CFS). It is part of an ME/CFS delivery plan, aiming to transform care for the illness, commissioned by Sir Sajid Javid, the Conservative health secretary, in 2022. The document, published today, said it was vital the attitudes of NHS staff changed so that patients with ME felt 'heard, believed and not stigmatised'. • ME sufferers 'feel invisible and ignored' amid lottery of NHS care There will also be a public awareness campaign, and schools and social care services will be asked to provide greater support to patients with the condition. The plan outlines steps to improve research and find treatments, including trials to repurpose existing medicines and see if they can help treat ME/CFS. Research teams are being invited to apply for grants of up to £200,000 from the National Institute for Health and Care Research to help find treatments. The health department also said it will explore the provision of a 'specialised service' in the NHS for patients with severe ME, but that this was 'subject to funding availability'. ME is said to affect about 400,000 people in England and Wales with symptoms including exhaustion and pain. Severe cases can be fatal, with patients bedridden and unable to eat or drink. It has taken decades to overturn a misconception that ME is a psychological or behavioural disorder. Ashley Dalton, the public health minister, said the plan was an 'important milestone' to improving care and that people were 'let down' by the health and care system. 'I am painfully aware of patient safety concerns, and even tragically avoidable deaths of people with ME/CFS, in England. These must become never events,' she wrote. However, campaigners said the plan 'is just not good enough', warning that it does not commit to research funding or new NHS services for people with severe ME. • Plan to help ME sufferers has been delayed for too long Inadequate NHS care was highlighted at the inquest of Maeve Boothby O'Neill, who died in 2021 aged 27 from malnutrition caused by severe ME. The coroner issued a prevention of future deaths report calling for attention to 'nonexistent' specialist care. Sonya Chowdhury, chief executive of Action for ME, said: 'We welcome actions included in the plan to redress stigma and improving training of professionals. It's imperative to improve access to health and social care services for people with ME, and this is a good start. We particularly welcome a commitment to explore a specialised service for people with severe and very severe ME. 'However, the plan simply does not go far enough. In particular, we need a funded, dedicated research hub to leverage our world-leading life sciences sector to unlock treatments and ultimately cures for ME. 'Without a commitment to better coordinate research, people with ME will continue to be neglected, overlooked and, for many, confined to their homes. 'The ME community and scientists have been calling for research to be accelerated through a strategic approach for years and we are still not seeing a strategic approach to address this historic shortfall.' Karen Hargrave, from the ThereForME campaign, also called for the plan to be backed by investment. 'This is about more than words on paper: it is about the people lying bedbound in darkened rooms across this country, who desperately need safe NHS care and research to accelerate treatments.' Dr Charles Shepherd, honorary medical adviser to the ME Association, said the group was 'especially disappointed to find that the plan fails to include any real action or funding' to improve treatment of people with ME. He said: 'Around 400,000 people have ME/CFS… this is a major health crisis. So while today's announcement is an important step forward in helping to improve the quality of life of people with ME/CFS, the government must now go much further to improve their medical care and management and help to fund much needed biomedical research into cause and treatment.'
Yahoo
17 hours ago
- Health
- Yahoo
Government pledges to ‘transform care' for people with ME
The Government has pledged to give hundreds of thousands of people living with chronic fatigue syndrome 'improved care closer to home' as it acknowledged that many patients with the condition 'struggle' to get appropriate care. The Department of Health and Social Care said it is 'committed to changing attitudes and transforming care' for people with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) as it prepared to publish a new plan to improve care for people with the condition. It comes after the high-profile death of a young woman from the disease. Maeve Boothby-O'Neill, 27, suffered with ME for a decade before she died at home in Exeter in October 2021 from severe malnutrition. Her inquest heard how she had been admitted to the Royal Devon and Exeter Hospital three times that year for treatment for malnutrition. The 10-day hearing focused on the final few months of her life, by which time she was confined to bed, unable to chew food and had difficulty drinking because she was not able to sit up. Miss Boothby-O'Neill, the daughter of Sean O'Neill, a journalist with The Times newspaper, had been suffering from fatigue since the age of 13, which got worse after she completed her A-levels. Deborah Archer, now an area coroner for Devon, Plymouth and Torbay, concluded Miss Boothby-O'Neill had died from natural causes 'because of severe myalgic encephalomyelitis (ME)'. Last year she wrote to the Government to highlight a lack of specialist beds, 'extremely limited' training for doctors and lack of available funding for research and treatment of the condition. On Tuesday, the Government said that it has created a plan which 'outlines clear steps to improve care for patients, by investing in research and offering access to care in the community'. The Department of Health and Social Care (DHSC) acknowledged that many people with the condition 'currently struggle to access appropriate care tailored to their complex condition'. The plan, which is expected to be published on Tuesday, will include new training for NHS workers, DHSC said. And the document will also include funding for research, the DHSC said. Public health minister Ashley Dalton, said: 'ME/CFS is a debilitating illness that can severely limit patients' ability to participate in everyday activities, maintain employment, or enjoy family and social life. 'Today's plan will help tackle the stigma and lack of awareness of this condition through improved training for NHS staff. 'And through our neighbourhood health services, we will ensure patients suffering from the effects of ME/CFS can access quality care, closer to home, as pledged in our 10-Year Health Plan. But Action for ME said that the plan 'does not go far enough'. Sonya Chowdhury, chief executive of the charity, said: 'We appreciate the time DHSC has put into the delivery plan and their engagement with us and the ME community throughout. 'However, the plan simply does not go far enough. We are at the stage now where we need more than rhetoric, we need to take a strategic approach if we want a different outcome. What is proposed in the plan will not offer this. 'We must have a funded, dedicated research hub to leverage our world-leading life sciences sector to unlock treatments and ultimately cures for ME. 'Without a commitment to better co-ordinate research, people with ME will continue to be neglected, overlooked and, for many, confined to their homes. 'ME charities have been calling for this funding to be accelerated for years and we are still not seeing a strategic approach to address this historic shortfall. Once again, it feels like people with ME have been ignored.' Dr Charles Shepherd, honorary medical advisor and trustee at the ME Association, said: 'Whilst today's announcement is an important step forward in helping to improve the quality of life of people with ME/CFS, the Government must now go much further to improve their medical care and management and help to fund much needed biomedical research into cause and treatment.'
The Independent
17 hours ago
- Health
- The Independent
ME care reforms promised after woman's tragic death
The government has pledged to overhaul care for hundreds of thousands of people living with chronic fatigue syndrome, acknowledging that many "struggle" to access appropriate support. The Department of Health and Social Care (DHSC) stated its intention to publish a new plan, asserting it is "committed to changing attitudes and transforming care" for individuals with Myalgic Encephalomyelitis /Chronic Fatigue Syndrome (ME/CFS). She had suffered with ME for a decade before dying at her home in Exeter in October 2021 from severe malnutrition. Her inquest revealed she had been admitted to the Royal Devon and Exeter Hospital three times in the year of her death for malnutrition treatment. The 10-day hearing detailed her final months, during which she was confined to bed, unable to chew food, and struggled to drink due to being unable to sit up. Miss Boothby-O'Neill, the daughter of Sean O'Neill, a journalist with The Times newspaper, had been suffering from fatigue since the age of 13, which got worse after she completed her A-levels. Deborah Archer, now an area coroner for Devon, Plymouth and Torbay, concluded Miss Boothby-O'Neill had died from natural causes 'because of severe myalgic encephalomyelitis (ME)'. Last year she wrote to the Government to highlight a lack of specialist beds, 'extremely limited' training for doctors and lack of available funding for research and treatment of the condition. On Tuesday, the Government said that it has created a plan which 'outlines clear steps to improve care for patients, by investing in research and offering access to care in the community'. The Department of Health and Social Care (DHSC) acknowledged that many people with the condition 'currently struggle to access appropriate care tailored to their complex condition'. The plan, which is expected to be published on Tuesday, will include new training for NHS workers, DHSC said. And the document will also include funding for research, the DHSC said. Public health minister Ashley Dalton, said: 'ME/CFS is a debilitating illness that can severely limit patients' ability to participate in everyday activities, maintain employment, or enjoy family and social life. 'Today's plan will help tackle the stigma and lack of awareness of this condition through improved training for NHS staff. 'And through our neighbourhood health services, we will ensure patients suffering from the effects of ME/CFS can access quality care, closer to home, as pledged in our 10-Year Health Plan. But Action for ME said that the plan 'does not go far enough'. Sonya Chowdhury, chief executive of the charity, said: 'We appreciate the time DHSC has put into the delivery plan and their engagement with us and the ME community throughout. 'However, the plan simply does not go far enough. We are at the stage now where we need more than rhetoric, we need to take a strategic approach if we want a different outcome. What is proposed in the plan will not offer this. 'We must have a funded, dedicated research hub to leverage our world-leading life sciences sector to unlock treatments and ultimately cures for ME. 'Without a commitment to better co-ordinate research, people with ME will continue to be neglected, overlooked and, for many, confined to their homes. 'ME charities have been calling for this funding to be accelerated for years and we are still not seeing a strategic approach to address this historic shortfall. Once again, it feels like people with ME have been ignored.'
Independent Singapore
4 days ago
- Business
- Independent Singapore
‘Work is not meant to be enjoyable,' S'poreans tell fresh grad who says their work is too tiring and 'sian'
SINGAPORE: A young local Reddit user appeared to receive a bit of a telling-off from others on the platform after they asked the question, 'Does anyone not feel like going to work in Singapore?' In a post on r/askSingapore from earlier this week, u/tryinbutdying wrote, 'Fresh grad who doesn't want to go to work and can't wait for the weekends because it's so tiring and sian to go to work. Anyone else feeling the same?' In a postscript, they wrote that they have chronic fatigue syndrome, which makes going to work too hard, and added a crying emoji. Many commenters told the post author that what they feel is a normal part of being a grown-up. 'Welcome to adulthood. Go to work just to hope 6 p.m. comes sooner before the boss throws random sh** at you. Go home just to hope the next day doesn't arrive so fast. Repeat the whole process until it's Friday, and just don't feel like going out during the weekend. Depressed on Sunday night because Monday is coming soon. But hey, at least we are getting paid!' was the top comment. Another Reddit user told the post author bluntly, 'Work is not meant to be enjoyable. I know many friends who switched careers to what they felt they were more passionate about, only to be reality checked. 'Turns out running a cafe is a costly balancing act. Social work requires dealing with lots of difficult, unappreciative people while feeling unable to help as much as you want. Freelancing is a highly competitive market, and it is hard to stand out. And digital forensics is more red tape management and bureaucracy than actually technical. 'I feel it is just better to accept that work is unenjoyable, and have it contrast against the rest of your life so that you will be more appreciative of it.' 'Are there actually adults who don't feel this way? I thought it was a pretty normal way to live life,' another commenter asked. 'You just described all of us, bruh,' one noted. 'Just started work? If so, it may be adjustment difficulty,' a Reddit user pointed out, reassuring the post author, 'Eventually you will adapt…but that makes weekends and all the PH much, much more precious and enjoyable.' Others encouraged the post author to find meaning in their work, or, if this is not possible, to find work where they can find meaning, as this would go far towards cutting away the negative feelings they have towards work. Some advised them to look for connections with people, since this can be a predictor of daily well-being and happiness. 'I think it's cynical to just accept that work is unenjoyable. Because it shouldn't be that way. In an ideal world, we all work not because we can't afford not to (nor for greed of wealth), but because it is meaningful and truly beneficial to our and our community's quality of life. No matter the emotional and mental challenges that are almost a given with certain jobs, like nursing and social work. And by right, those problems can be alleviated/have solutions if efforts are made to rethink our approach to work, productivity, and humans as a resource,' added a commenter. /TISG Read also: Man who applied for 'countless roles' is feeling job search burnout, asks if he should take a break
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.'
