Latest news with #chronicfatigue
Medscape
6 days ago
- Health
- Medscape
After a Long Delay, ME/CFS Strategy Finally Arrives
The Department of Health and Social Care has published its long-delayed delivery plan to improve care and support for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The plan was welcomed by Action for ME as 'an important step towards recognising the scale and seriousness of the condition', but the charity warned it 'simply does not go far enough'. ME/CFS affects around 390,000 people in the UK. Symptoms include debilitating fatigue, sleep problems, and difficulties with thinking, concentration, and memory. Around one in four people diagnosed with the condition report being housebound or unable to work. Focus on Three Priority Areas The cross-government plan was developed in consultation with the NHS and external stakeholders. It focuses on three priorities: Research Attitudes and education Living with ME/CFS A consultation on the interim plan, launched in July 2023, revealed widespread dissatisfaction with how people with ME/CFS are treated. Respondents reported difficulties accessing specialist services, negative attitudes from professionals, and challenges relating to education, welfare, and employment, including benefits. Delays Sparked Criticism In February this year, Liberal Democrat health spokesperson Helen Morgan told The Times the plan represented an 'opportunity to move away from this legacy of neglect towards a transformation of care and research'. However, she noted that it had taken 33 months and five health secretaries to get to this point. When the final plan was still unpublished last month, Morgan described the further delay as 'inexcusable'. People with ME and their carers had been 'left behind for decades', she said. 'They have faced inadequate care, scant research funding, no treatments, and little hope of a better future.' Government Acknowledges Patient Concerns In the plan's foreword, Minister for Public Health and Prevention Ashley Dalton acknowledged the inconsistency of care and the feeling among some patients that their condition had not been appropriately recognised by the health and care system. 'I know that those with severe or very severe ME/CFS, and their families and carers, have often felt particularly let down by those systems,' she said. In a separate letter to members of the ME/CFS Task and Finish Group on the day of the final plan's launch, Dalton acknowledged: 'People living with ME/CFS often face stigma and misunderstanding,' which she attributed to 'a lack of awareness and education about the condition.' The final plan includes a commitment to introduce new training for NHS healthcare professionals 'as a priority' to address stigma and improve professional understanding. Access to Services and Employment Support The government said that ME/CFS patients would benefit from closer-to-home care under neighbourhood health services, as outlined in its 10-year health plan. It also promised support through reforms to benefit assessment processes and employment initiatives for people with long-term conditions and disabilities. However, Action for ME said these proposals lacked detail and failed to show how they would bring about 'meaningful change'. Research Funding Still Limited The plan includes increased funding for ME/CFS research via the National Institute for Health and Care Research and the Medical Research Council. This includes exploring the repurposing of existing medicines for ME/CFS. However, Action for ME warned that competitive grant processes were 'unlikely to reverse the long history of underfunding of ME research'. Other conditions, such as dementia, mental health, and rare diseases benefit from dedicated platforms with sustained, multi-million-pound funding, it said. Calls for Strategic Commitment Action for ME also criticised the government for ignoring its calls for strategic research funding and a dedicated ME research hub. Chief Executive Sonya Chowdhury said the plan was an 'important step for the ME community, long overlooked and under-served'. However, she added 'the plan must not be a token gesture – it requires a sustained, strategic commitment to care, funding, and research'. In her foreword, Dalton said future funding would depend on what is 'practically feasible and financially viable and affordable, especially within the challenging current fiscal climate'.
News.com.au
7 days ago
- Health
- News.com.au
‘Well-over six-figures': Young Aussie reveals the grim cost of her health battle
Madeline Lebski went from being financially stable and working full-time, to struggling to pay her bills because she was so sick that she couldn't get out of bed. Ms Lebski was only 27 when she got sick. She went from living in Byron Bay and embracing a healthy lifestyle to being bedridden and unable to go out with her friends, let alone hold down a job. 'I was just feeling a bit burnt out and then I took a month off, and didn't get out of bed for five years,' the now 36-year-old told Ms Lebski never imagined she would become disabled. She had always been healthy with no pre-existing conditions, and her biggest health concern used to be catching the yearly flu. When her health fell apart in 2018, she sought answers, but they weren't easy to obtain and it was also expensive. 'Every GP I went to said I had a virus and to go home and rest. I even showed up at the emergency department once, and they wouldn't admit me, and I said I needed to see a doctor for psychiatric issues,' she said. She was diagnosed with chronic fatigue and, years later in 2022, was diagnosed with mast cell activation syndrome (MCAS), a condition where certain cells inappropriately release chemical mediators that cause a range of issues. In Ms Lebski's case, the symptoms were brain fog, painful periods, fatigue, nausea, daily headaches, anxiety, depression and panic attacks. Living with that chronic disease was incredibly hard; there was so much 'medical trauma' involved and her whole life became limited overnight. 'I was thinking, will I ever travel again? Will I ever work again? I lost a lot of friendships because you can't go and be social,' she said. 'It is an invisible condition so people don't really understand.' The young Aussie explained that, once she started looking for medical specialists to try and figure out what was happening with her body, the expenses were 'crazy' and became debilitating. 'Medicare didn't cover anything I needed. It didn't cover much of the specialist appointments or alternative therapies,' she said. 'The financial stress of it exacerbates the condition. If you're in a stressful of a state you can't focus on being well.' Ms Lebski did everything she could to self-fund the cost of her ill-health. She even sold her perfume business for $80,000. 'I ended up selling my business because I needed the money. I sold that and it paid for me to exist for the next 18 months,' she said. When that cash ran out, she turned to Centrelink, but she wasn't eligible for payments because she lived with her boyfriend. 'I was at my wits end. I remember just breaking down on the phone to Centrelink. My partner earned like $60,000 at the time, and they were like 'It is too bad, there's nothing we can do'.' she said. The rub was that a $60,000 salary was barely enough to support two people, let alone when one of those people needed to attend special appointments that could cost over $600 per hour. 'I made multiple attempts at trying to get on Centrelink, at one point, my parents were like, 'what if you study online?' Just so I could basically get Centrelink.' She completed a graphic design course that cost $5000, making her eligible for Centrelink, and received some income for a period. However, she is not sure if it was worth it. The cash flow helped at the time, but she was left with a $5000 debt at the end of it. Things got so dire that her parents had to dig into their own funds reserved for their retirement to keep her afloat. 'They've had to use their personal savings (including) getting money out of their superannuation,' she said. 'It is hard because they're in their early 70s, they've worked incredibly hard, and this is a period of life where they should be able to enjoy that,' she said. Ms Lebski said, 'as a family, we would have easily spent well-over six-figures' just on her health, and she even moved back to her home state of Tasmania to get more support from her family. It has been seven years since Ms Lebski's health declined, and she's finally in a place now where she can work full-time and manage her condition. 'Thankfully all the time and money I have invested has paid off in my case. I work part-time and that is where I see myself sitting while my body is recovering,' she said. It has been such a journey and a struggle, but there have also been positive things that have happened along the way. The 36-year-old is thankful to have found a community online and has been sharing her story in the hopes of helping others feel less alone and isolated. Social media has helped her find 'community and some visibility', enabling her to make friends and connections, even when she was bedridden. Despite her complex experience with Australia's health system, she still also feels 'incredibly lucky' that we have Medicare. 'I think we are incredibly lucky for what we do have access to and I do really mean it,' she said. 'Even right now I'm on a mental health care plan and I'm so grateful for that, but I do think it is very restrictive and there's no nuance to what disability looks like,' Ms Lebski said. She also can't help but feel this general sense of being 'behind' everyone else because she spent so many years sick. 'In another life I would have hoped that working on my business and selling it would have been something I would have bought a home with …. but that isn't the case,' she said. 'We live in rental and have a housemate to share the costs. I'm 36 and I would have loved to be able to plan for some things.'
Khaleej Times
17-07-2025
- Health
- Khaleej Times
UAE: Feeling tired even after a good night's sleep? Here's why
Altaf Abdullah, a UAE resident in his mid-30s, feels like he isn't living life to the fullest. He often wakes up tired despite getting seven hours of sleep and ends his day feeling completely drained. 'I love cooking, but after work, I'm so exhausted that I don't feel like doing anything,' said Abdullah. 'Even in the mornings, I sometimes wake up feeling just as tired as when I went to bed. The fatigue affects my energy at work too.' Doctors in the UAE say Abdullah is not alone. Many people report similar symptoms of persistent tiredness, and there are several potential causes: poor sleep quality, screen use before bedtime, emotional stress, undiagnosed sleep disorders like sleep apnea, and even vitamin D deficiency. Dr Rajit Pillai, neurologist at Aster Clinic, noted, 'We frequently see patients struggling with persistent fatigue, low energy, and non-restorative sleep. They often say they feel tired regardless of how many hours they sleep, have difficulty concentrating, or are irritable during the day.' As public awareness of sleep health grows, more people are seeking help sooner — including adults noticing changes in focus and energy, and even parents worried about their children's sleep patterns. Dr Amir Firouzjaei, general practitioner and Chinese medicine practitioner at Wellth, said he often treats patients complaining of chronic fatigue. 'In many cases, patients show no abnormal lab results, yet they feel exhausted all day,' he said. 'After three to five acupuncture sessions, many of them report better sleep, improved energy in the mornings, and reduced reliance on stimulants like coffee.' According to Dr Amir, in Traditional Chinese Medicine (TCM), chronic fatigue and waking up tired are signs of an energetic imbalance, particularly a deficiency of Qi – the body's vital energy. 'Acupuncture is one of the most effective treatments and should ideally be done twice a week for at least one month,' he advised. He pointed to several contributing factors: career stress, emotional strain, irregular eating habits, excessive screen use, and insufficient rest. Young adults aged 25 to 40 are particularly vulnerable due to demanding work lives. Meanwhile, middle-aged individuals may experience fatigue due to natural age-related decline in kidney energy or a hectic family and work schedule. Dr Nevine Sherif, a specialist in internal medicine at Aster Hospital, said, listed several medical and lifestyle causes of fatigue, even when someone gets enough sleep: Sleep apnea, which causes repeated interruptions in breathing during sleep, reduces oxygen flow and disrupts deep rest. Restless legs syndrome, which creates an uncontrollable urge to move the legs at night. Screen time before bed, noisy sleep environments, or mental health conditions like anxiety and depression can also interfere with restful sleep. She also pointed out that chronic fatigue can signal underlying health conditions such as anemia, thyroid disorders (especially hypothyroidism), diabetes, kidney disease, or chronic infections. 'Modern habits can seriously disrupt the body's natural rhythms,' Dr Nevine warned. 'Scrolling through your phone late at night, skipping exercise due to a busy schedule, or relying heavily on caffeine can all impact the quality of sleep.' Dr Rajit emphasised that many people are unaware they have underlying sleep disorders. Often, it's a partner or family member who first notices symptoms like loud snoring, gasping for air during sleep, or frequent nighttime awakenings — all of which could indicate obstructive sleep apnea or restless legs syndrome. 'In the UAE, fatigue is also commonly linked to vitamin D deficiency, dehydration, and high stress levels, all of which can impact the brain's ability to recharge during the night,' he added. Who's most affected? Fatigue caused by poor sleep isn't limited to one age group. 'Sleep issues manifest differently at each stage of life,' said Dr Nevine. 'Teenagers and young adults tend to stay up late and sleep in, disrupting their body clocks. Middle-aged adults often deal with work stress, family responsibilities, or undiagnosed conditions like sleep apnea. Many women in perimenopause experience insomnia due to hormonal changes. And in older adults, sleep becomes lighter and more fragmented, with frequent daytime naps further affecting nighttime sleep.' Dr Rajit added, 'Young adults in their 20s and 30s often experience fatigue due to irregular sleep schedules, screen exposure, and high stress. Middle-aged adults may face more physiological issues, while older adults experience normal shifts in sleep architecture that can be compounded by health conditions or medications.' Treatments The good news? These issues are manageable with the right lifestyle changes and medical support. Dr Amir recommended a diet of warm, nourishing foods such as soups, congee, and cooked vegetables, while avoiding raw or cold foods, especially in the mornings and evenings. Dr Nevine advised residents suffering from chronic fatigue to begin with a proper sleep assessment. 'Good sleep hygiene is critical,' she said. 'Avoid caffeine after 2pm, stick to consistent sleep and wake times, and don't lie awake in bed — get up, do something calming, and return to bed when sleepy.' She also encouraged people not to ignore prolonged fatigue and to seek help from a psychiatrist or mental health professional if emotional factors are involved. Regular gentle exercise, mindfulness, and limiting screen time can also support better energy levels and overall well-being.
Daily Mail
08-07-2025
- Health
- Daily Mail
Doctor warns millions of Britons have undiagnosed sleep condition that's linked to swathe of killer diseases
A GP has warned patients to check for signs of a hidden sleep problem linked to a host of conditions that could shorten your life. Dr Asif Ahmed took to social media to raise the alarm about what he labelled 'one of the most chronically undiagnosed conditions out there' sleep apnoea. This is a condition where a patient suffers interruptions to their breathing while they sleep and is estimated to blight the lives of millions of Britons. 'We need to stop missing this diagnosis' Dr Ahmed said on Instagram. 'If you've been diagnosed with chronic fatigue or fibromyalgia, or you can't lose weight or a prediabetic, this condition has to be ruled out. 'Nothing will work, nothing will get better until we treat this.' Fibromyalgia is a long-term condition that causes pain all over the body. As well as causing exhaustion, sleep apnoea is linked to an increased risk of deadly conditions like high blood pressure, stroke and type 2 diabetes as well as depression. View this post on Instagram A post shared by Dr Asif Ahmed (MBBS, MRCGP, BSc) (@dra_says) One recent study even found a link between the sleep apnoea and lung cancer, though this is still being explored. Its connection to numerous health problems is part of the reason Dr Ahmed said that if sleep apnoea goes untreated it can knock 10 to 14 years off your lifespan. He said the impact of sleep apnoea on a person's health couldn't be understated and it could act as barrier to successfully treating other conditions. 'It is so significant, it really messes with your metabolism,' he said. 'If it's undiagnosed and untreated, nothing we do therapeutically is going to work.' Despite the dangers, Dr Ahmed said sleep apnoea often remains hidden particularly among single people, as it is often partners who spot it first. 'They complain of loud snoring or recognise anionic episodes (periods where a person stops breathing) while the other person is sleeping,' he said. Thankfully, he added that there are now simple test kits that can be used at home to tell if a person had the condition within days. 'I urge everyone whose got chronic fatigue or are feeling tired all the time or can't lose weight to really get checked for sleep apnoea,' he said. While sleep apnoea has multiple types the most common is called obstructive sleep apnoea (OSA). This where the walls of the throat relax and narrow or close during sleep, limiting the flow of oxygen into the body. In response the brain instinctively pulls a person out of deep sleep to get more oxygen. This leads to significant sleep interruptions and as a consequence exhaustion in daily life and additionally—in the longer term—an increased risk of serious health problems. Almost 4million people in the UK are estimated to have moderate or severe OSA, although it is considered to be under-diagnosed and could affect up to 10million. Causes of sleep apnoea vary but include obesity leading to more tissue on the neck, smoking and drinking as well as having large tonsils. The most obvious symptoms of sleep apnoea are the aforementioned snoring and breathing interruptions noticed by partners. Individuals themselves may notice they wake up a lot in the night and feel exhausted during the day, suffer concentration problems at work or school, have mood swings or have a headache upon waking. The NHS encourages anyone with signs of sleep apnoea to contact their GP due to its links to serious health problems and the impact it can have on a patient's life. Diagnosis is usually done through special kits that measure breathing rate and heartbeat which can often be worn at home. Data from the kit is then analysed to see if a patient does have sleep apnoea and if so, how severe it is. Treatment can involve wearing mechanical masks that pump fresh air into the nose and mouth as a patient sleeps or surgery to open the airways more. However, some low-tech methods like taping a tennis-ball to your back to encourage you to sleep on your side—which can help with sleep apnoea—can also be tried. Regardless, medics urge patients not to self-diagnose and seek help from their GP if they have symptoms.
The Independent
28-06-2025
- Health
- The Independent
‘You have to fight tooth and nail': PIP claimants tell of struggle to get awarded as Labour accused of making it harder
Sarah has just found out that she will likely be able to keep her Personal Independence Payment (PIP) after months of worry. The 40-year-old mother-of-one works from home, which allows her to juggle life with being a new parent and her disabilities. Chronic fatigue syndrome in her joints means she regularly experiences brain fog and exhaustion, and needs help. And it's her PIP that makes this possible, helping her to afford a carer, stay in work and spend time with her baby. Claimed by 3.7 million people, the health-linked benefit at the heart of Labour's proposed welfare reforms is designed to help with extra costs incurred by living with an illness or disability. The government's concessions on plans to cut welfare spending now mean that Sarah won't be subject to stricter eligibility criteria when next assessed for the benefit. Instead, from November 2026, only new claimants look set to be subject to the tighter criteria, under Labour's bill going through Parliament. But Sarah says she is struggling to see this as a victory. 'If there's another Sarah who's born a few years later, and ended up in this situation, it's still just as appalling,' she says. 'It's encouraging some disabled people to throw other disabled people under the bus. And it's vicious, because it relies on some people being scared enough to say 'well, we'll take what we can get'.' And like so many others, Sarah did not find applying for PIP an easy process to begin with. 'It feels really deliberate' 'It feels like you're being tripped up constantly,' Sarah says. 'It feels really deliberate, how difficult it is. It feels extremely deliberate. Because there are so many ways it can be made more accessible to disabled people.' Halfway through her assessment for PIP, Sarah's infant daughter started to cry in the other room. This caused her to panic, and she shouted to her husband that the baby might need changing. Because of this 'the assessor said I was clearly able to respond to my daughter's needs and assess what she needed,' Sarah says. 'But I said to him I can't care for my daughter on my own, I rely on other people doing that for me. I need somebody with me while I'm with her.' None of this was included in his report, she claims. And it's not just Sarah. Ginny's husband Tim was diagnosed with myotonic muscular dystrophy in 2006, a progressive genetic condition that affects muscles and movement. The mother-of-two works part-time while also caring for her husband full-time. His PIP award means means Ginny is entitled to a £200 Carers Allowance, which she says is essential to support her family. 'Tim doesn't like to admit it, but people frequently can't understand what he says. Every day I'm asking him to repeat himself as his wife, and I know him well,' Ginny explains. 'He was asked to repeat himself at least five times during the assessment. But when it came to the report, it said the assessor had no problem understanding him.' Ginny says the assessor also wrote down that Tim was managing to work part-time for 25 hours as a library assistant. He was actually working just 25 hours a month, just over six hours a week, Ginny says. 'Do you have a dog?' At a PIP assessment, the assessor will decide if an applicant has limited ability to carry out daily living activities. They do this by asking applicants to carry out a range of activities, awarding them points based on how limited their ability is. According to one former assessor, opening questions might include: 'How are you doing today? How did you get here? Do you have a dog?' An applicant could be forgiven for thinking these questions are just small talk, their PIP assessor being friendly and trying to ease them into the process. But in most cases, the assessment has already begun, the former worker says. How they answer these questions could be the difference between a lifeline to pay for their health-related costs or nothing. The former assessor, who wished to remain anonymous, said this approach is standard for PIP assessors. It is permitted under the DWP 's PIP assessment guide, which recommends assessors carry out 'informal observations' that may 'show discrepancies'. 'As soon as you say to them, 'I'm here to do the assessment, is that OK?' and they say yes, it's started,' she explains. 'And then you'll comment, you'll look around the room for photographs of them on holiday, of children. You're looking for evidence that they're not telling the truth.' According to polling by disability charity Sense, over half (51 per cent) of disabled people with complex needs report feeling humiliated during benefits assessment. A further 45 per cent said the process made their symptoms worse. The charity's policy adviser, Evan John, said: 'I think sometimes when you hear some of the discussion around PIP, somebody might think that it was an easy benefit to claim, but that experience is really divorced from the experiences of disabled people.' 'We'd like to see a system that treats disabled people with dignity, that assess people fairly, but doesn't make them feel like criminals for trying to access the support they need.' 'You have to fight tooth and nail' Neither Sarah nor Tim were awarded any points at their PIP assessment. Instead, they asked for a mandatory consideration, but were turned down and faced a lengthy wait for an appeal at a tribunal. 'We went to mandatory consideration fully aware that they would just turn that down because that seems to be the standard with them,' Ginny says. 'But that was just a step to go to appeal.' Sarah was only given the lowest rate of PIP after tribunal, while Tim was awarded his in light of more medical evidence. Around 56 per cent of PIP assessments resulted in a reward between 2019 and 2024. But around two-thirds of decisions are overturned at the tribunal stage, independent of the DWP, by a panel of decision-makers including a judge. 'You have to fight tooth and nail,' Ginny says. 'All the government's talk about 'people just are getting this too easily' or 'supporting people who have the most severe conditions'. 'In my book, my husband has a severe condition and it just feels like they're redefining disability to suit themselves.' It remains to be seen whether the government's concessions over its welfare plans will be enough to appease wavering backbenchers with MPs set to vote on the measures on Tuesday. A DWP spokesperson said: 'The fact is that PIP assessment suppliers and healthcare professionals are involved in the process but are only one part of the evidence used – they have no role in the decision-making process, and are clearly instructed not to base their opinions solely on the situation seen at assessment. 'We're creating a sustainable welfare system that genuinely supports sick and disabled people while always protecting those who need it most, and at the heart of this is our review of the PIP assessment to ensure it is fit for the future. 'We will work with disabled people and a range of experts on this as we deliver our Plan for Change.'
