Latest news with #MyalgicEncephalomyelitis
Scoop
04-08-2025
- Health
- Scoop
ANZMES Supports "Therapeutic Landscapes" Exhibition: A Window Into Living With ME/CFS
On Friday, 1st August, ANZMES President Fiona Charlton and Vice President Ange Robinson attended Massey University researcher and artist Jessica Philbrick's thought-provoking exhibition, 'THERAPEUTIC LANDSCAPES: Paintings on Living with ME/CFS.' The exhibition is open to the public, running throughout August at the Square Edge Community Arts Centre. ANZMES proudly funded this unique exhibition as part of our 2024 Research Grants and Scholarships, reflecting our ongoing efforts to support creative and educational initiatives that raise awareness about ME/CFS. It features a series of original oil paintings, offering a window into the unseen daily struggles of individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Exhibition Details: Event Dates: 31st July - 31st August Location: 47 The Square, Palmerston North Additional Information: Further resources for education on ME/CFS will be available at the exhibition. Jessica Philbrick, aged 29, has lived with mild-moderate ME/CFS since her teenage years and is currently completing her Masters in Arts (Psychology). She has combined her background to create original oil paintings based on interviews with people living with ME/CFS in New Zealand. Jessica Philbrick's exhibition features five original works that illustrate how home environments serve as therapeutic spaces for symptom management and emotional well-being. Through paintings accompanied by personal stories, the exhibition explores the profound emotional, physical, and psychological complexities of living with ME/CFS. This work not only fosters understanding and dialogue among the general public but also offers valuable insights for health professionals on better supporting those with ME/CFS and other chronic illnesses. Jessica says, 'I am so thankful for the generous support from ANZMES towards exhibiting paintings. The sponsorship from ANZMES was incredibly helpful in disseminating the findings of my research and the stories from my participants out into a community platform. These paintings are about sharing experiences but also encouraging hope by opening a conversation around how the home can be used to be supportive, safe, enriching and healing.' It was Fiona and Ange's pleasure to attend the exhibition's opening to represent ANZMES's commitment to engaging with the ME/CFS community and sharing these vital narratives with the broader public. Fiona says 'It's a privilege for ANZMES to sponsor this powerful art exhibition and to attend opening night. We are especially proud to support the extraordinary artist, Jessica Philbrick, whose work shines a light on this invisible illness—raising awareness while contributing to therapeutic research.' We encourage the public to attend, learn, and engage in meaningful conversation about the challenges faced by those living with ME/CFS. To learn more about Jessica's Masters project and read the findings which provide insight into the lived experience, visit: Understanding ME/CFS and long COVID Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a long-term, multi-systemic illness affecting the nervous, endocrine, autonomic, cardiovascular, and immune systems. It is often triggered by a viral illness and involves overwhelming fatigue and other symptoms that range in severity. Patients experience severe fatigue, post-exertional malaise (PEM), unrefreshing sleep, cognitive impairment, and orthostatic intolerance (to list a few). With over 100-200+ potential symptoms, the condition's impact can vary greatly, making diagnosis and management highly individualised. Roughly 25% of all ME/CFS cases are categorised as mild, 50% as moderate-severe (housebound) and 25% as very severe (bedbound). Long COVID (LC) is characterised by persistent, unexplained symptoms following infection with COVID-19 (SARS-CoV-2) lasting more than 12 weeks and not explained by an alternative diagnosis. Both conditions share symptoms such as extreme fatigue, cognitive dysfunction, and post-exertional symptom exacerbation (PESE), with up to 50% of long COVID cases fitting the diagnostic criteria for ME/CFS. COVID developing to ME/CFS Using data from a long COVID research initiative run by the US National Institutes of Health (NIH), the incidence of ME/CFS is now considered 15 times higher than pre-pandemic levels, and that people with a history of COVID are almost eight times as likely to develop the chronic condition. Post-Exertional Malaise (PEM) Post-Exertional Malaise (PEM), also referred to as post-exertional symptom exacerbation (PESE) in the context of long COVID, is a debilitating response to normal, every-day activities in people with ME/CFS. For individuals with severe-very severe ME/CFS or LC, this can be triggered by sensory overload, such as exposure to light or even simple conversations. Repeated episodes of PEM can exacerbate these already severe symptoms, and even minimal exertion can lead to significant setbacks for the patient's health and wellbeing. About ANZMES The Associated New Zealand ME Society is the National Advisory on ME/CFS. Established in 1980, ANZMES has been at the forefront of research, representation, and education for ME/CFS in Aotearoa/New Zealand. The organisation's expertise comes from its reputable medical team of advisors, which includes a world renowned expert and MNZM recipient, a fellow of the Royal NZ College of General Practitioners (RNZCGP) and a network of academic researchers, clinicians, and representatives from the ME community. The organisation is a registered provider of continuing medical education with the Royal New Zealand College of General Practitioners (RNZCGP) and is dedicated to improving the lives of those affected by ME/CFS, long COVID, and associated conditions. ANZMES is a founding member of the World ME Alliance, and a member of the Neurological Alliance NZ, NZ Carers Alliance, long COVID Alliance, Disabled Persons Assembly NZ (DPA), and Access Matters. ANZMES is affiliated with: Aotearoa COVID Action, and Ehlers-Danlos Syndromes Aotearoa New Zealand. The organisation's vision is to live in a world where Myalgic Encephalomyelitis (ME)/ Chronic Fatigue Syndrome (CFS), long COVID (and associated conditions) are recognised, supported, diagnosed early, treated effectively, and cured. The vision focuses the organisation's mission as the trusted leader to fund and generate robust Aotearoa research, represent the global voice, and educate through best practice to improve outcomes. The vision and mission drive the organisation's purpose as the leading National Advisory to produce and deliver quality, reputable, authoritative, evidence-based information, data, research, and education. We represent the needs of the community to ensure best outcomes are the primary focus of healthcare, legislation, and services that affect people living with ME, long COVID, fibromyalgia, and dysautonomia.
Daily Mail
31-07-2025
- Health
- Daily Mail
Brandi Glanville teases hot make out session with a 'boy or girl' in wild update on her facial disfigurement
Brandi Glanville made her priorities crystal clear while delivering a wild health update on her mysterious facial disfigurement on Tuesday. The 52-year-old RHOBH alum said she couldn't wait to make out 'with a hot boy or girl' as she listed all she was looking forward to once she overcame her health ailment. Brandi made the revelation as she publicly thanked Dr. Michael Scoma, an infectious disease immunology expert who 'delivers proactive treatments to Long COVID and [Myalgic Encephalomyelitis] ME patients.' 'I am so thankful to my NYC angel @DrScomaME_CFS for actually wanting to help me get better. I'm finally getting answers!' Brandi gushed on X. 'Can't wait to live again (fix teeth, put on 10lbs, and make out with a hot boy or girl). I cannot wait to get out of this house and live!' Glanville continued: 'And then I fall in love again, but I won't let him know it. I won't lose that power, but then I will end up losing the power and will date for three years and it will be over.' The Remedy singer previously revealed she hadn't had sex since October 2023 during the December 29th episode of her podcast, Brandi Glanville Unfiltered. The 52-year-old RHOBH alum was publicly thanking Dr. Michael Scoma, an infectious disease immunology expert who 'delivers proactive treatments to Long COVID and [Myalgic Encephalomyelitis] ME patients' (pictured July 16) In April, Brandi admitted to Us Weekly that she missed having sex with men: 'I miss socializing with my girlfriends and then having sex with men.' 'I'm a Scorpio. I love sex. I was having a lot of it and now I haven't had any of it and I'm like, "Have I forgotten how to kiss?" But, like, I've lost myself. I feel more insecure than I ever have in my life,' she said. Glanville has seen dozens of doctors and claimed steroids, antibiotics, and antiviral medication have all failed to help her. The Traitors contestant has spent over $113K trying to remove the hard lumps on her cheekbone, jaw, and neck which she blames on the COVID-19 vaccine and a mysterious facial parasite caught in Morocco. Brandi's The Real Housewives Ultimate Girls Trip co-star Vicki Gunvalson claims to have contracted the same exact condition, which she treats with taking Ivermectin 'twice a month.' 'We all got sick when we went to Morocco,' the 63-year-old RHOC alum recalled on SiriusXM Tuesday. 'My stomach's bloated, I don't feel good. I feel tired. Where I'm at now is like, "Why do I always feel sluggish?" I don't go poop. Like, it's very hard for me. It might be once a week, if that.' Vicki added: 'Brandi is in so much pain. She's got a very large moves. It goes into her mouth. It's bad.' Glanville - who commands $125 on Cameo - keeps busy selling used clothing and accessories through her 'Reality Shop' on eBay. The former model is also every bit the influencer with paid partnerships for companies like Cruise of Deception, Wander, Usual Wines, and Chara Health. Earlier this month, The Valley star Scheana Shay confessed in her memoir My Good Side that she had a secret 'physical relationship' with Brandi's husband Eddie Cibrian 'at the end of 2006, which was a weekly booty call.' Brandi rejoiced on X: 'I'm finally getting answers! Can't wait to live again (fix teeth, put on 10lbs, and make out with a hot boy or girl). I cannot wait to get out of this house and live!' Glanville continued: 'And then I fall in love again, but I won't let him know it. I won't lose that power, but then I will end up losing the power and will date for three years and it will be over' It wasn't until two years later that the 52-year-old actor's on-set affair with his Northern Lights leading lady LeAnn Rimes destroyed his eight-year marriage with Glanville. The California blonde and Eddie remain amicable for the sake of their two adult sons - Mason, 22; and Jake, 18. On March 7, Cibrian revealed he got a plum new part by sharing tuxedo-clad snaps of himself with eight-time Oscar nominee Glenn Close on the LA set of the upcoming Hulu legal drama, All's Fair. Creator Ryan Murphy's $69.7M-budget sexy adult procedural about an all-female law firm also features Kim Kardashian, Sarah Paulson, Naomi Watts, Niecy Nash, Teyana Taylor, Brooke Shields, Matthew Noszka, and Ed O'Neill.
Scoop
29-07-2025
- Health
- Scoop
ANZMES Demands Urgent Action On Severe ME Day, Highlighting "Systemic Neglect" Of Thousands Bedridden In NZ
On Severe ME Day, the Associated New Zealand Myalgic Encephalomyelitis Society (ANZMES) is issuing an urgent call for government action to address the systemic neglect of New Zealanders living with Severe and Very Severe Myalgic Encephalomyelitis (ME). ANZMES highlights that an estimated 25% of the 65,000 Kiwis with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) - over 16,000 people - are housebound or completely bedridden, many requiring 24/7 care simply to survive. Severe ME is a devastating, multi-systemic neurological illness that can leave individuals unable to tolerate light, sound, or touch. It can rob them of the ability to speak, eat, or perform any basic self-care. Despite the severity and scale of the crisis, these individuals remain largely invisible, trapped within their homes and failed by a healthcare system ill-equipped to meet their needs. Fiona Charlton, ANZMES president states "Their suffering is compounded by a healthcare system that lacks the necessary expertise and facilities. On Severe ME Day, we are not just asking for awareness, we are demanding tangible commitments from MPs to provide safe, compassionate, and evidence-based care. Inaction is no longer an option." ANZMES is calling on policymakers to address this crisis by actioning specific, urgent changes: Fund Dedicated Care: Establish funding for dedicated ME/CFS respite and long-term residential care facilities staffed by healthcare professionals trained by ANZMES in the specific needs of severe ME patients. Mandate Education: Implement mandated ME/CFS education for all healthcare professionals to ensure safe, evidence-based practice and prevent the harm caused by inappropriate advice like Graded Exercise Therapy (GET). Update Disability Policy: Formally include ME/CFS in all national disability support policies and frameworks, as recommended by the United Nations, to ensure access to essential support. United Nations Committee on the Rights of Persons with Disabilities (CRPD. In its 2022 review, the Committee made a recommendation that the New Zealand government should: 'Expressly include ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) in disability policy and practice, to ensure access for persons with ME/CFS to health care and disability services'. As part of the campaign, ANZMES is running an InMEmory Tribute to honour the individuals who have been lost to ME/CFS and to acknowledge those currently living in profound isolation. "Every name and country in our tribute represents a life devastated by this illness and a family left to navigate a broken system," said ANZMES President. "Their lived stories are the reason we fight for a future where no one is left to suffer in silence." ANZMES urges the public, healthcare professionals, and policymakers to visit its website Severe ME Day 2025 to access critical resources and learn how they can support the urgent call for action.
Scotsman
22-07-2025
- Health
- Scotsman
What is ME and the symptoms of chronic fatigue syndrome explained
ME can cause debilitating symptoms 🏥 Sign up to our daily newsletter Sign up Thank you for signing up! Did you know with a Digital Subscription to Edinburgh News, you can get unlimited access to the website including our premium content, as well as benefiting from fewer ads, loyalty rewards and much more. Learn More Sorry, there seem to be some issues. Please try again later. Submitting... An estimated 390,000 people living in the UK have ME/Chronic Fatigue Syndrome. A new plan for care reforms have been announced by the government. ME can cause debilitating symptoms. A new plan for care reforms for ME/Chronic Fatigue Syndrome (CFS) has been revealed by the government. ME affects an estimated 390,000 people living in the UK, it can cause debilitating symptoms including fatigue, sleep problems and difficulties with thinking, concentration and memory. Advertisement Hide Ad Advertisement Hide Ad The impact varies between cases, but severe ME/CFS, which is thought to affect a quarter of those diagnosed, leaves patients unable to leave their home or work. Many of those living with ME/CFS currently struggle to access appropriate care. An estimated 390,000 people living in the UK have ME/Chronic Fatigue Syndrome. | Pexels, Tima Miroshnichenko The plan will introduce new training for NHS healthcare professionals, featuring up-to-date learning resources to increase understanding to ensure signs are not missed. It will help combat the stigma faced by people living with ME/CFS, which stems from a lack of awareness about the condition, as well as increase funding for research, awarded through the National Institute for Health and Care Research and will address the specific needs of children and young people, ensuring they receive appropriate support in education settings. Advertisement Hide Ad Advertisement Hide Ad Minister for Public Health and Prevention, 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.' Sonya Chowdhury, Chief Executive, Action for ME, said: 'This is an important step for the ME community, long overlooked and under-served. The plan must not be a token gesture - it requires a sustained, strategic commitment to care, funding, and research. Without it, meaningful outcomes for people with ME will not be achieved.' Advertisement Hide Ad Advertisement Hide Ad What is ME/CFS? Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS), is a long-term condition that can cause debilitating symptoms that affect different parts of the body. It is characterised by extreme tiredness, debilitating pain and additional symptoms related to post-exertional malaise. What are the symptoms of ME? The NHS explain that symptoms of ME can include extreme tiredness, problems sleeping, problems with memory or concentration, post-exertional malaise. Other symptoms can include: muscle or joint pain headaches a sore throat or sore glands that are not swollen flu-like symptoms feeling dizzy or sick fast or irregular heartbeats (heart palpitations) muscle twitches or spasms intolerance to alcohol or certain foods or chemicals being very sensitive to light, sound, touch, taste and smell having hot flushes or cold chills if the temperature changes feeling dizzy, sick or fainting when standing up from a sitting or lying position There is no specific test for ME and not everyone will experience the same symptoms. It is defined as mild, moderate, severe and very severe and can have a significant impact on a person's day to day life. You can find out more about ME/CFS and what support is available at Action for ME.
Scotsman
22-07-2025
- Health
- Scotsman
What is ME and the symptoms of chronic fatigue syndrome explained
ME can cause debilitating symptoms 🏥 Sign up to our daily newsletter – Regular news stories and round-ups from around Scotland direct to your inbox Sign up Thank you for signing up! Did you know with a Digital Subscription to The Scotsman, you can get unlimited access to the website including our premium content, as well as benefiting from fewer ads, loyalty rewards and much more. Learn More Sorry, there seem to be some issues. Please try again later. Submitting... An estimated 390,000 people living in the UK have ME/Chronic Fatigue Syndrome. A new plan for care reforms have been announced by the government. ME can cause debilitating symptoms. A new plan for care reforms for ME/Chronic Fatigue Syndrome (CFS) has been revealed by the government. ME affects an estimated 390,000 people living in the UK, it can cause debilitating symptoms including fatigue, sleep problems and difficulties with thinking, concentration and memory. Advertisement Hide Ad Advertisement Hide Ad The impact varies between cases, but severe ME/CFS, which is thought to affect a quarter of those diagnosed, leaves patients unable to leave their home or work. Many of those living with ME/CFS currently struggle to access appropriate care. An estimated 390,000 people living in the UK have ME/Chronic Fatigue Syndrome. | Pexels, Tima Miroshnichenko The plan will introduce new training for NHS healthcare professionals, featuring up-to-date learning resources to increase understanding to ensure signs are not missed. It will help combat the stigma faced by people living with ME/CFS, which stems from a lack of awareness about the condition, as well as increase funding for research, awarded through the National Institute for Health and Care Research and will address the specific needs of children and young people, ensuring they receive appropriate support in education settings. Advertisement Hide Ad Advertisement Hide Ad Minister for Public Health and Prevention, 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.' Sonya Chowdhury, Chief Executive, Action for ME, said: 'This is an important step for the ME community, long overlooked and under-served. The plan must not be a token gesture - it requires a sustained, strategic commitment to care, funding, and research. Without it, meaningful outcomes for people with ME will not be achieved.' Advertisement Hide Ad Advertisement Hide Ad What is ME/CFS? Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS), is a long-term condition that can cause debilitating symptoms that affect different parts of the body. It is characterised by extreme tiredness, debilitating pain and additional symptoms related to post-exertional malaise. What are the symptoms of ME? The NHS explain that symptoms of ME can include extreme tiredness, problems sleeping, problems with memory or concentration, post-exertional malaise. Other symptoms can include: muscle or joint pain headaches a sore throat or sore glands that are not swollen flu-like symptoms feeling dizzy or sick fast or irregular heartbeats (heart palpitations) muscle twitches or spasms intolerance to alcohol or certain foods or chemicals being very sensitive to light, sound, touch, taste and smell having hot flushes or cold chills if the temperature changes feeling dizzy, sick or fainting when standing up from a sitting or lying position There is no specific test for ME and not everyone will experience the same symptoms. It is defined as mild, moderate, severe and very severe and can have a significant impact on a person's day to day life.
