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Women with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) tend to have more symptoms and co-occurring conditions than men, according to the world’s largest study of the disease. The study, entitled DecodeME, reveals women who have the condition for more than 10 years are more likely to experience increasingly severe symptoms as they get older. ME/CFS is estimated to affect more than 250,000 people in the UK, of all ages and from all social and economic backgrounds. Its key feature, called post-exertional malaise, is a delayed dramatic worsening of symptoms following minor physical effort. Other symptoms include pain, brain fog and extreme energy limitation that does not improve with rest. Causes are unknown and there is currently no diagnostic test or cure. Experts from the University of Edinburgh analysed anonymous survey questionnaires from more than 17,000 people with ME/CFS. Two-thirds of women, and slightly more than half of men, reported at least one active co-occurring condition. Similarly, 39.2% of women and 28.6% of men reported at least one inactive co-occurring condition. We discovered that the disease is worse for women, in older people, and many years after their ME/CFS started Professor Chris Ponting of the University of Edinburgh A condition was considered active if the participant had experienced symptoms in the preceding six months. The most common active co-occurring condition was irritable bowel syndrome, with clinical depression, fibromyalgia, anaemia and hypothyroidism also featuring prominently. Women also reported, on average, more symptoms than men – 42 compared with 36. The most common of these symptoms were brain fog – a term commonly used to describe the cognitive impairment experienced by participants – unrefreshing sleep and muscle pain. These findings highlight the very serious impact ME/CFS has on women who are disproportionately affected Sonya Chowdhury, chief executive of Action for M.E Participants were also asked to define the severity of their illness from mild to very severe using definitions from the UK’s National Institute for Health and Care Excellence guidelines. Experts identified that being a woman and having ME/CFS for more than 10 years are risk factors for severe illness, with symptoms increasing in intensity as they age. Professor Chris Ponting, study lead from the MRC human genetics unit at the University of Edinburgh’s Institute of Genetics and Cancer, said: “ME/CFS is a devastating disease affecting a UK population the size of Derby. “We discovered that the disease is worse for women, in older people, and many years after their ME/CFS started. “Our hope is that DecodeME’s genetic results will shed light on why certain groups are more susceptible to ME/CFS than others.” Sonya Chowdhury, chief executive of Action for M.E. and chair of the management group of the study, said: “These findings highlight the very serious impact ME/CFS has on women who are disproportionately affected. “It’s important to also recognise the impact that it has on men who have ME/CFS and we thank the 20,000 men and women who have already signed up to take part in this very important study. “We still need more to join us, so if you are 16 or older, live in the UK and have a diagnosis of ME/CFS, please do take part now to help us decode ME at www.decodeme.org.uk/portal.” Read More Charity boss speaks out over ‘traumatic’ encounter with royal aide Ukraine war’s heaviest fight rages in east - follow live 4 hacks to get teens off the sofa and get active – as study warns of heart damage Taking adult education classes may lower risk of dementia, study suggests Indiyah Polack: I didn’t want to go on Love Island because of my acne

If you’re taking your teen to Glastonbury or any festivals this summer, you are probably thinking about all the things that could possibly go wrong. There could be a big fall out, maybe they get lost, or it may just turn out to not really be their thing. Either way, it’s best to be positive, as they are at that age where they probably want more independence, embracing more responsibility, and figuring out their likes and dislikes. Here are a few things to consider before the big event. Choose the festival together In a typical year, thousands of festivals take place across the country with some having more than 200,000 people in attendance. From music to heritage and comedy to film, it’s safe to say that you and your teen are spoilt for choice. “Taking kids to festivals is a great way of introducing some outside life and it’s good to try and make it as cost effective as possible, so being prepared is key,” said child and behavioural expert Amanda Jenner. “Make sure you pick your festival wisely for the first time and check the events so you can make a plan for the day.” And sometimes, opting for a smaller or fringe festival would make for a less overwhelming introduction. Allow them to bring a friend This wouldn’t be a terrible idea, especially if the friend is also a first-time goer. Although a festival is like a small town populated with friendly faces you can build new interactions with, it helps to have a familiar face around — close in age — who your teen can share this new experience with. It could also help ease any quiet worries they have and give them a real opportunity to enjoy themselves, escape for the weekend and strengthen their friendship bond. “Bringing a friend is OK, but it’s a huge responsibility so lay down the rules in front of both sets of parents and have a meeting point if you get separated. Make sure they have mobiles fully charged. Location settings on at all times,” Jenner added. Tell them the truth If you’ve been to a festival before, you would know what to expect, so rip the band-aid off. Give your child the heads up and let them know that there will be incredibly long queues, huge crowds and sometimes even some chaos. And yes, people will be drunk, giddy and misbehaving. “I would make your own wrist band with mobile numbers on it so you can be contacted at anytime if you get separated. And make a note of any medical conditions to be on the safe side,” said Jenner. [xdelx],, At this point, it may also be worth speaking to them about staying hydrated, alcohol consumption and interacting with strangers. “Make sure they are hydrated at all times and understand the importance of fluids. Freeze water bottles so they stay cool all day. [For older children], explain the rules: never accept anything of anyone other than your parents. “Pack snacks for the day as it can be expensive. Nothing that would melt. Invest in a soft cool bag to keep things cold for snacks during the day. As food is pricey.” Support them in their outfit choices Thankfully the sun will be shining, but knowing British weather, you can’t put all your eggs in one basket. Remember to bring a light jacket you can layer up with, your umbrella, and hat too. That aside, festivals are for statement outfits that will ensure you stand out from the crowd. Depending on your teen — you know them best — let them choose a theme that combines their personal style with comfort. It’ll give them something to look forward to. Make a plan but be flexible Familiarising yourself with the schedule could help you better plan your time at the festival. Depending on what type of festival it is, there could be many things happening at the same time. Are there any must-sees? Things you don’t mind missing? Any non-negotiables? Dividing your schedule using these subcategories will help you both remain on the same page. “Give them some space. But perhaps for a first festival allow 30 minutes at a time to see if they adhere to the times, and let them go for a further 15 mins each time,” said Jenner. “Make sure you have a good plan so you get the most out of the day and night. There are so many things to see, especially in the family facilities that are available.” [xdelx] Read More Charity boss speaks out over ‘traumatic’ encounter with royal aide Ukraine war’s heaviest fight rages in east - follow live 10 ways to give your home an instant summer glow How – and why – to prioritise mindfulness in the busyness of summer 5 sandal trends that will be huge this summer

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