Latest news with #neurologicaldisease
BBC News
3 days ago
- Health
- BBC News
Bedfordshire woman with ME criticises health plan for condition
A woman living with myalgic encephalomyelitis (ME) said she has "lost faith" in receiving "meaningful support" after the government released a new support plan for the also known as chronic fatigue syndrome (CFS), is a neurological disease which affects about 390,000 people in the UK. On 22 July the government launched a new delivery plan to improve education around the illness, as well as increase funding, research and medical training for health practitioners. Maddie Walker, 51, from Bedfordshire, said she was "disappointed" in how the plan lacked any "real change to improve the quality of life for sufferers". Ms Walker said she was healthy and active before she developed severe ME and was now unable to leave the house without a wheelchair and has carers visit her multiple times a described living with the condition as "mind-numbing" and that she felt "despondent". The condition's symptoms include fatigue, muscle and joint weakness, cognitive dysfunction and post-exertional malaise. Misdiagnosis Ms Walker was initially diagnosed with fibromyalgia with fatigue, a condition causing muscular pain all over the body. As a result of the crossover in symptoms, Ms Walker's ME was not recognised initially, leading her to be recommended treatment that was not tailored to both conditions."Something I feel really strongly about is people being given the right information at the point of diagnosis because if I had known what I was doing was harmful, I might not be in this situation."Ms Walker said she has a "terrible, really poor quality of life" and that "hundreds of thousands of people have once again been let down" by the new delivery plan. "We just aren't important enough," she said. The ME Association (MEA) said the government must go "much further" to improve medical care and funding for "much needed" biomedical research. It added that currently most research studies for ME/CFS are funded by the charity added there were numerous strengths to the plan, including the approach to broaden education about the illness in the NHS and in schools. Dr Charles Shepherd, a medical adviser with the MEA, said the plan does not align with the 2021 National Institute for Health and Care Excellence guidelines, which suggested making referral services more accessible in hospitals. Ashley Dalton, the MP for West Lancashire and minister for public health and prevention, said: "[The] plan will help tackle the stigma and lack of awareness of this condition through improved training for NHS staff." A spokesperson of Department for Health and Social Care (DHSC) said: "We acknowledge there is more to be done and will continue to build on the foundations of these actions well beyond the publication of this plan."There was a "clear commitment" to achieving "meaningful change" for the ME/CFS community, it using neighbourhood health services, the DHSC said it will ensure patients can access quality care closer to home. Follow Northamptonshire news on BBC Sounds, Facebook, Instagram and X.
Globe and Mail
15-06-2025
- Health
- Globe and Mail
The hidden toll of chronic migraine on workers and companies
This is the weekly Work Life newsletter. If you are interested in more careers-related content, sign up to receive it in your inbox. One of Maya Carvalho's worst migraines lasted nine days. 'I was completely bedridden,' she says. 'My pain was so intense it felt like if I moved my head an inch, it would crack open.' She had been thriving in a high-powered role at a multi-national beauty company in New York City when migraine suddenly entered her life. 'It hit me out of the blue,' she says. 'I hadn't had migraines before, not even as a kid.' Almost overnight, what started as one attack escalated into chronic migraine – defined as 15 or more migraine days per month. 'I knew I couldn't perform at the level I wanted to. And there was no conversation about accommodations, no awareness that migraine was a disease. So I had to walk away [from my job],' she says. 'It was devastating.' A costly, invisible disease Today, chronic migraine affects an estimated 1-2.2 per cent of the global population while migraines affect 12 to 15 per cent, with women more likely to be affected. According to the World Health Organization, a day with severe migraine is as disabling as a day with quadriplegia. That's why Toronto-based Ms. Carvalho, who is the founder of the Canadian Migraine Society, is passionate about helping workplaces understand the full weight of this invisible neurological disease. Migraine is often more than head pain. It can involve light and sound sensitivity, nausea, vomiting and vertigo. 'Each person has their own constellation of symptoms,' Ms. Carvalho says. 'But the pain is intense. I've had women tell me it's worse than childbirth.' The productivity paradox From a business perspective, migraine is a silent disruptor. Ms. Carvalho says employers often focus on absenteeism, but presenteeism – when employees are present at work, but not functioning at full capacity because of pain or other issues – may be even more costly. '[Presenteeism] affects productivity, and often leads to isolation and mental health struggles,' she says. Yet, with a few simple, low-cost changes, workplaces can make a difference. Scent-free policies, anti-glare screens, quiet spaces and flexible work options can be game-changers, she says. 'Even just letting someone work from home one day a week can help,' she says. Ms. Carvalho also urges HR teams to review their benefits plans. 'Making sure that the newest migraine treatments are covered can prevent the disease from escalating,' she says. 'We wouldn't have to keep watching women leave the workforce at their peak.' Workplace equity at stake For Ms. Carvalho, supporting people with migraine is about more than healthcare – it's about fairness. 'This is a work equity issue,' she says. 'Supporting those with chronic migraine isn't charity. It's smart business.' Her message to those experiencing chronic migraine is clear: 'You are not alone, and there is absolutely hope for you. We'll walk this journey with you – it doesn't have to be this hard.' 30 per cent That's how many of the menu items Starbucks plans to cut, while adding new trendier offerings such as protein cold foam, which offers 15 grams of banana flavoured, muscle-building goodness. Read more Feedback is key to employee development but, according to this article, it's effectiveness depends on timing. Research suggests mornings are best, as most people are more alert and receptive earlier in the day because of natural circadian rhythms, which influence sleep-wake cycles, hormone production and body temperature. Read more 'If someone comes to me and says they're raising a million dollars, I'll ask right away, 'How long does that get your company through?' If they cannot tell me that it's around 24 months, or even a bit more, we have to restructure the round completely,' says Mary Dimou, general partner at Nàdarra Ventures. In this article, capital investment pros share how you can raise capital during uncertain times, emphasizing proactive communication, strategic timing and pivoting your message when it's not landing. Read more 'Canadian‑made' isn't just a nice‑to‑have; it's a smart strategy. More companies are going local to connect with consumers who care about ethics and sustainability. The bonus? Leaner supply chains, honest branding and a tighter bond with customers. Read more
Health Line
28-05-2025
- General
- Health Line
9 Multiple Sclerosis Facts You Should Know
Multiple sclerosis is a chronic condition that currently does not have a cure. Over 1.8 million people worldwide live with MS. Symptoms vary from person to person but can include numbness, tingling, slurred speech, and vision problems. Multiple sclerosis (MS) is a neurological disease, which means it affects your nerves. It's also an autoimmune disease. This means your body's defenses against disease malfunction and start attacking your own cells. With MS, your immune system attacks your body's myelin, which is a protective substance that covers your nerves. The unprotected nerves are damaged and can't function as they would with healthy myelin. The damage to the nerves produces a wide range of symptoms that vary in severity. Read on for some key facts you should know about MS. 1. MS is a chronic condition Multiple sclerosis is a chronic condition, which means it's long lasting, and there's no cure for it. That said, it's important to know that for most people who have MS, the disease is not fatal. The World Health Organization reports that more than 1.8 million people worldwide live with MS. Research indicates that people with MS will typically have an average life expectancy similar to people who do not have MS. Research also suggests that a rare few may develop complications so severe that their life expectancy may be negatively affected. Although MS is a long-term condition, medications and lifestyle adjustments are helpful in managing most of its symptoms. 2. MS affects younger adults, and often women The National Multiple Sclerosis Society (NMSS) reports that though healthcare professionals diagnose MS in children and older adults, those affected typically receive a diagnosis between ages 20 and 40 years. When a person over age 50 receives a diagnosis, it's usually called late-onset MS. Older adults sometimes have a more difficult time finding a diagnosis due to other, age-related conditions with similar symptoms. The National MS Society reports that women are three times more likely than men to be diagnosed with MS. 3. MS can be difficult to diagnose MS can be challenging to diagnose. Symptoms and single tests may not be enough to definitively diagnose MS. MS shares symptoms with a number of other conditions, making pinpointing the source harder. Multiple tests to rule out other possible causes of the symptoms are usually required, including: blood tests neurological exams magnetic resonance imaging (MRI) visual evoked potential (VEP) test spinal fluid analysis optical coherence tomography (OCT) 4. MS symptoms vary The list of possible MS symptoms is long. It includes numbness and tingling, vision problems, balance and mobility issues, and slurred speech. There's no such thing as a 'typical' symptom of MS because each person experiences the disease differently. The same symptoms may come and go frequently, or you may regain a lost function, such as bladder control. The unpredictable pattern of symptoms has to do with which nerves your immune system attacks at any given time. 5. MS involves relapse and remission Most people who seek treatment for MS go through relapses and remissions. Remission is a period in which your relapsing symptoms improve. A remission can last for weeks, months, or, in some cases, years. But remission does not mean you no longer have MS. MS medications can help reduce the chances of developing new symptoms, but they do not cure MS. Symptoms will likely return at some point. 6. There's a cognitive side to MS The damage MS does to your nerves can also affect your critical thinking and other cognitive (mental) skills. It's not uncommon for people with MS to have problems with memory and finding the right words to express themselves. Other cognitive effects can include: inability to concentrate or pay attention impaired problem-solving skills trouble with spatial relations (knowing where your body is in space) Cognitive problems can sometimes lead to frustration, depression, and anger. These are typical reactions that your doctor can monitor and help you manage. 7. MS is a silent disease MS is labeled as a 'silent disease' or an ' invisible illness.' Many people with MS look no different from someone without it because some of the symptoms, such as blurred vision, sensory problems, and chronic pain, aren't visible. However, someone with MS may need special accommodations even if they don't have mobility issues and seem fine. MS is also called a silent disease because even during remission, the disease still progresses. This is sometimes referred to as the 'silent progression' of MS. 8. It helps to stay cool Doctors recommend that people with MS stay cool whenever possible. Heat intolerance is a common problem and often causes an exacerbation of symptoms. Unlike people who don't have MS, heat intolerance doesn't just mean experiencing discomfort because of high heat — it's a temporary worsening of MS symptoms. You might experience a spike of symptoms from: hot weather or sun exposure fever or illness hot baths or showers overheating from exercise Use fans and air conditioning, cool drinks, and icy compresses to keep cool. Wear layers of lightweight clothing that are easy to remove. A cooling vest can also help. It's important to note that although you may have a relapse that's heat-related, hot temperatures do not cause MS to progress more quickly. 9. Vitamin D plays a role Research indicates a link between vitamin D and MS. The nutrient may protect against MS, and it may lead to fewer relapses in people who already have the disease. Researchers note that more research is needed to better understand the relationship between vitamin D and MS. Sunlight triggers the production of vitamin D in your body, but sun exposure can also lead to heat-induced symptoms. Other sources of vitamin D can include fortified milk, orange juice, and certain breakfast cereals. Cod liver oil, swordfish, salmon, tuna, and eggs are also natural food sources of vitamin D.
Daily Mail
20-05-2025
- Health
- Daily Mail
Subtle change to vision that is an 'early warning sign' of Parkinson's - experts say NEVER ignore it
A subtle change to vision may be the first tell-tale warning sign of the neurological disease Parkinson's, experts have claimed. Early indications of the condition have long included tremors, stiffness, slowness of movement and loss of smell. But a change in depth perception may strike before these other hallmark symptoms, one top NHS GP said. According to Dr Punam Krishan, who appears on BBC Morning Live, depth perception is a 'common challenge' for people with Parkinson's and 'poses significant issues with mobility'. More than ten million people worldwide are thought to have the condition, including Michael J. Fox, Billy Connolly and Jeremy Paxman. Parkinson's is caused by a loss of nerve cells in an area of the brain responsible for producing dopamine, which helps co-ordinate body movement. It gets worse over time as more cells die, with sufferers eventually left struggling to complete day-to-day tasks. While the condition can alter vision is multiple ways, including double vision, hallucinations and dry eyes, two specific areas in the house could pose a particular problem for those experiencing depth perception issues, Dr Krishan said. 'Stepping into the bath has the potential to be hazardous as surfaces are slippery when wet, so steady footing is all that prevents a fall from happening. 'For older loved ones, I'd recommend a walk-in bath, if not a shower, to minimise the risk. 'The stairs can also be dangerous for anyone facing depth perception or mobility issues. 'Ensure your, or your elderly loved ones', vision isn't impaired by checking that navigating the stairs isn't a challenge.' She added: 'Being able to move around the home confidently is key to maintaining independence as we grow older, so spotting this warning sign early—whether in yourself or an older loved one—can enable them to get the right support to continue enjoying life at home. 'Making changes around the home will help handle the condition, too. Grab rails or a stairlift will enable you to move around the home independently and safely.' Parkinson's affects around 153,000 Britons and 500,000 Americans. But this figure is set to rise to 172,000 adults in the UK by 2030, experts fear. Every hour, two people are diagnosed with the condition in the UK and the disease costs the NHS more than £725million a year. Other common signs of the condition include balance problems such as issues with coordination and muscle cramps are other common signs. But it is a poorly understood condition and experts are still working to uncover what triggers it. Current thinking is that it's due to a combination of genetic changes and environmental factors. While there is no cure, treatments are available to manage symptoms and maintain quality of life for as long as possible.
CBS News
12-05-2025
- Health
- CBS News
Frates family helps North Andover woman navigate husband's ALS diagnosis
Nicole Johnson plays "Ring Around the Rosie" with her three kids, ages 5, 3, and under 1 on her North Andover lawn. On the outside, she is calm and smiling, unable to tumble under pressure. On the inside, Johnson says her head is brimming with loose ends needing to be tied and grief she has no time to feel. On Valentine's Day 2024, Nicole's husband Chuck was diagnosed with Amyotrophic Lateral Sclerosis or ALS, a fatal neurological disease, while Nicole was expecting their youngest. A few months after baby Jenna's birth, via C-section, Chuck was already confined to a wheelchair and Nicole took over his care, helping him into the car and watching him overnight. "I started doing that probably like a month postpartum out of necessity," she said. In the face of endless uncertainty, she reached out to Nancy Frates, an ALS patient advocate and mom of Pete Frates, who founded the viral Ice Bucket Challenge in 2014, spreading awareness of the disease globally. Nicole Johnson and Nancy Frates CBS Boston Nicole says Frates told her to focus not only Chuck's treatment but also his care within their home, which for ALS patients can cost up to $250,000 a year or more. "She was like you need to create a team behind you, support, and you need to raise money for you," Nicole said. "Make Way for Chucklings" Nicole formed "Make Way for Chucklings", a non-profit organization supporting their family and spreading awareness of ALS. She began to share their journey, from dances and story times to new wheelchairs and fundraisers, on her Instagram. In a blur, Chuck's journey ended. He passed away in April, less than two years after his ALS battle began. "We were about to go to bed one night and you can just see it in his eyes, something happened, and within a minute his eyes were closed," Nicole said, "They were like, oh no, he has time, like, you can enter a clinical trial up to two years post diagnosis. Well, he's gone 14 months post diagnosis so, never enough time." Now, Nicole can confide in Nancy. Both women are all too familiar with their hard path. While ALS awareness has surged and there are several drugs approved to slow the progression of the disease in some patients, both Nicole and Nancy say there are gaps in care for these patients. "I was told once that if I wanted coverage for Pete's care that we could put him in a nursing home and that would be covered and he was 30 years old," Frates said, "I thought to myself what is wrong with us. What is wrong with us as a society?" Helping other ALS patients To this day, most of the financial burden of at home care for ALS patients falls on their loved ones. Nicole says there are also long wait times for much needed equipment like wheelchairs. "In my way to give back I'd also like to come up with some sort of guidelines or one page cheat sheet on what to do when you get a diagnosis or what to do at this stage of progression," Nicole said, "Chatting with people who have already been through this journey and understand it has been incredibly helpful and I'd like to be that resource." To learn more about Nicole and Chuck's journey and ALS, visit and
