In the News

16 October, 2024

Devastated Father Calls For A Change In ME Care In Northern Ireland, England And Wales After His 27-Year-Old Daughter Who Suffered From Chronic Fatigue Syndrome 'Died Of Malnutrition' In 2021

The heartbroken father of a 27-year-old daughter who died from malnutrition whilst suffering from ME tells why he has fought to try to change the system.

15 October, 2024

Conchis Reflects On Chronic Fatigue Syndrome And New Singles

It has taken five years, but Conchis is finally ready and healthy enough to properly announce herself to the world. Following the release of her first couple of singles entitled ‘Trouble’ and ‘Cray Cray’, Soundsphere had the chance to talk with the mysterious artist.

15 October, 2024

Author Feels More Included Thanks To Chopsticks

An author who is housebound and largely bedbound has been using a miniature cardboard cut out version of herself on chopsticks as a way to "feel more included" in society. Sally Doherty, who lives in Surrey, was diagnosed with myalgic encephalomyelitis (ME) in May 2006 after falling ill in late 2005. She has to spend prolonged periods of time in bed resting, interspersed with essential tasks including eating and showering, as well as writing.

15 October, 2024

Miranda Hart, Lyme Disease And The Doctors That Don’t Think It Exists

As the actor reveals the real reason she has been absent for many years, Zoë Beaty looks at the fatigue-based illness that Hart is suffering from and why it is controversial for so many.

14 October, 2024

Devastated Father Calls For A Change In ME Care In Northern Ireland, England And Wales After His 27-Year-Old Daughter Who Suffered From Chronic Fatigue Syndrome 'Died Of Malnutrition' In 2021

The heartbroken father of a 27-year-old daughter who died from malnutrition whilst suffering from ME tells why he has fought to try to change the system.

14 October, 2024

'I'm Too Tired To Chew Food But Still Can't Get Care For My ME'

Nicole, 52, has had severe ME, also known as chronic fatigue syndrome, for six years. She spends most of her time in bed with the light off and black-out curtains on the windows. Nicole's 30-year-old daughter has given up work to care for her mum - something Nicole finds heart-breaking, though her daughter does it readily. Nicole spoke to the BBC after it asked for people's experiences of ME care on the ME Association Facebook page.

14 October, 2024

Care For People With Severe ME Is “Nonexistent,” Says Coroner In Call To Action

The complete lack of specialist care in England for patients with severe myalgic encephalomyelitis (ME or chronic fatigue syndrome) could cause deaths in future unless urgent action is taken, a coroner has warned. The hard hitting prevention of future deaths (PFD) report by assistant coroner Deborah Archer on the death of Maeve Boothby O’Neill, 27, also highlighted the lack of research funding, training, and guidelines on treating the condition.

13 October, 2024

Miranda Hart Learned To Accept The Limitations Of Chronic Fatigue – And Find Joy

As the title of her book says, comedy writer and actor Miranda Hart hasn’t been entirely honest with us. She rose to fame in 2009 with her sitcom Miranda, took a lead role in the BBC’s Call the Midwife and published four books – all the while her jolly public persona has masked a lifetime of illness and chronic fatigue.

13 October, 2024

Identification Of Texture MRI Brain Abnormalities On Fibromyalgia Syndrome Using Interpretable Machine Learning Models

To provide objective diagnostic markers for fibromyalgia symptoms (FMS) diagnosis, we have created interpretable extreme gradient boosting (XGBoost) models using radiomics to aid in the diagnosis of chronic pain (CP) and to develop nomogram models for diagnosing subgroups of FMS. A group of 54 patients with CP and 71 healthy controls was randomly separated into training and validation groups, using a 7:3 ratio. Radiomics features were extracted from grey-matter and white-matter in the filtered mwp0* image. The Mann-Whitney U test, Spearman’s rank correlation test, and least absolute shrinkage and selection operator (LASSO) were utilized to select features. An XGBoost model was created based on these features, and Shapley Additive exPlanations (SHAP) was used for personalization and visual interpretation. A nomogram was developed for the diagnosis of FMS subgroups, utilizing radiomics scores and clinical predictors. The efficacy of the nomogram was evaluated using the area under the receiver operating characteristic curve, while decision curve analysis was employed to evaluate its clinical efficacy. The XGBoost model displays stability in the training validation group, indicating lower overfitting of CP model. The nomogram model combined with the rad-score has a greater ability to distinguish between typical and sub-clinical than the clinical factor model alone. We developed and validated a CP diagnosis model by XGBoost and realized model visualization through SHAP. The rad-score obtained by machine learning was used to build a nomogram model that combines clinical scales to distinguish patients with typical and sub-clinical fibromyalgia.

13 October, 2024

Miranda On 'Joy And Fun' Of Getting Married At 51

Miranda Hart has said "getting married in mid-life is a full injection of joy and fun", after revealing she's tied the knot at the age of 51. The comedian and actress has married a man she met during the pandemic. "It’s the best!" she said. "He's my best friend, we have the best fun... The fact that I could meet somebody - it's not a rom-com story but it’s hope, and that's why I think, whatever situation you're in, there's always hope that things really do change." She discusses the relationship in her new book, and also opens up about her struggle with chronic fatigue after being diagnosed with Lyme disease.