tv Newsbeat Documentaries BBC News May 26, 2018 12:30am-1:01am BST
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charged with rape and sexual abuse. his lawyer says he intends to plead not guilty. he's been released on a $1 million bail bond. two exit polls suggest that irish voters have approved a move to liberalise the country's strict abortion laws by a wide margin. the official referendum result is not expected until midday on saturday. brazil's president michel temer says he plans to send in the army to clear roads that have been blocked for five days by lorry drivers protesting against high fuel prices. diesel prices have nearly doubled in brazil since 2016. one day on from cancelling the planned summit with north korea's kim jong—un, president trump has said it could take place next month after all. he told reporters both sides were currently in discussions. now on bbc news — me and me, a newsbeat documentary. it doesn't bother me to pass out, i
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do it so much. i'm not going to do anything to make you pass out. it's fine, if it will help with the data... some people when they stand up, their blood pressure drops and their pulse races to try and make up for it. and we are trying to see if that happens with everyone. she was embarrassed at her illness, which is, if you imagine someone with cancer being embarrassed to have cancer, it is ridiculous. any effect around 250,000 people in the uk. this gets us getting loud, she is aberdour, because it is agony for her and it is something she hates, it is something she thinks she is a bad mother because she can't stand his voice. it often develops in your late teens or early 20s. it is more common in women, and even the government except it is poorly understood. doctors are just not even aware of confident about how to diagnose this illness.”
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even aware of confident about how to diagnose this illness. i am emma donohoe and i was diagnosed with me at 19. at its worst it left me bedbound, iam at 19. at its worst it left me bedbound, i am still not 100% but after five years of recovery and feeling much better than i did, i am finding out what life is like for other me sufferers. they don't believe you. but you are fighting an illness, but then you are fighting every health professional will stop i visit the labs at the forefront of research, who are trying to find a breakthrough to make life better for those living with this hugely debilitating condition. she never gave up hope, she never ever gave up hope. the day this video was shot was the last time i felt well. this was my greatest passion. i dreamt of a life of dance, but it was not meant to be. when i was 17, i was diagnosed
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with glandular fever. it then turned into something called fatigue, i kept pushing my body, and it led to something called me. the way i describe it to my friends use, and madge and if you had the flu, and then imagine you had the worst hangover of your life at the same time. for me at the worst, i had crippling muscle pain in my legs i had such a dull ache in my body, i was always so tired and fatigue, i would sleep most of the day, and the worst pa rt would sleep most of the day, and the worst part was no one could tell me why my body was broken. 0ver worst part was no one could tell me why my body was broken. over the yea rs i have why my body was broken. over the years i have started to get that, but when i had any it was such a dark time in my life, i never want to think about it ever again. —— when i had any. —— me. but as i have gotten better, i have started to
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wonder what life is like other sufferers of ame, and i have long to figure out if there is hope. i am on my way to meet sophie, who suffers from severe me, i have been told she is currently going through a crash which is something that the me community users to describe a flat in symptoms. —— flair. i know when i used a crash with severe me it could be triggered by the smallest use of energy, like having a tower —— showerfor ten minutes energy, like having a tower —— shower for ten minutes would energy, like having a tower —— showerfor ten minutes would crush me out for days or a week, the longest crash i ever had would last up longest crash i ever had would last up to six months. i expect in sophie to be very drained and very exhausted today. —— i am expecting. hello! i apologise, i am dripping wet. emma, nice to meet you. this is lucas. is this what you do every
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morning to sophie? does lucas know to be quiet... yeah. when i take him in there, he knows now that i whisper and i am always liked, hi mummy, we will be quiet. he starts to do that and he doesn't raise his voice too high for a couple of. they are the couple of minutes that she gets to see him. the second he gets loud again he is aberdour because it is just loud again he is aberdour because it isjust agony to loud again he is aberdour because it is just agony to her. and loud again he is aberdour because it isjust agony to her. and it is something that she hates, it is something that she hates, it is something that she thinks she is a bad mother because she can't stand his own voice. sophie is 21 and has been diagnosed with me recently. she thinks it may have started in childhood. at the moment she can get out of bed at all. he! it can take hours for sophie to wait properly. phil will come and go several times
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to wa ke phil will come and go several times to wake herup phil will come and go several times to wake her up slowly. morning sweetie. sorry. she constantly wears eye masks or sunglasses and cannot there are any light at all, which is why filming is difficult. is it ok ifi is it ok if i let the camera lady in? yeah. 0k. can i put this sidelight on for you? there is one colour which sophie can bear better any of this, but she still has to keep her sunglasses on. only one person talks at a time, just keep very quiet, very slow movement, that should be all right for her. how has your friends and family
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dealt with your diagnosis? sophie was that crash started three weeks ago. and a rapid decline into finding life more and more painful. having cognitive dysfunction or brain fog which remains —— leaves you not remembering your own train of thought. and muscle spasms leave her literally flawed. —— floored. and more reliant on phil. how often do you get to see lucas, if it every day? d will be to wait until this stops?
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thank you so much sophie, take it easy. there is no time limit on how long a crash can last, but it leaves you feeling hopeless and helpless. is just hard because isjust hard because i is just hard because i want to help, you know, you want to see her with lucas, but she is clearly, she is too overwhelmed just lying there and hearing lucas playing downstairs. it is just really hearing lucas playing downstairs. it isjust really sad... hearing lucas playing downstairs. it is just really sad... my heart goes out to her. i never thought about having severe me at the same time as
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having severe me at the same time as having a young child to look after. that is such a difficult situation. and...| that is such a difficult situation. and... i struggle even to think about how she copes. when the doctor diagnosed me with and me, i was relieved. when the doctor diagnosed me with and me, iwas relieved. —— when the doctor diagnosed me with and me, i was relieved. —— me. when the doctor diagnosed me with and me, iwas relieved. —— me. i remember thinking, 0h and me, iwas relieved. —— me. i remember thinking, oh god, and me, iwas relieved. —— me. i rememberthinking, oh god, think they found something. at that point i have lived for about six months with just full body exhaustion. i had debilitating fatigue which left me pretty much bedbound 90% of the time, the rest of the time i spent lying on the sofa. a lot of people told me up front, don't bother, don't waste your money or your time pursuing these treatments, because there is no cure out there for any command nothing works. even if that
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was true, i could not accept that at 19. iam was true, i could not accept that at 19. i am going to meet someone who, despite being severely affected, is trying to do something that one day might help everyone. i am really looking forward to meeting hannah, i think what she is doing is incredibly brave, and i know she is still severely affected by me, but she wants to be part of something that might help. before hannah though, let's meet the nurse helping with a project to find a reliable way to test if someone has me. we have two sets of data and blood from her already, so this will be the third set. in that way we can watch how her illness progresses and what it shows in the blood is that we have taken. interesting. and see if there is any correlation between the way she is feeling and any particular markers in the blood. we don't know of any at the moment, but thatis don't know of any at the moment, but that is what this study is all about. hello. nice to meet you. how
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are you feeling today? not great, i have been doing a lot over the past week, more than usual. hannah, i'd don't know, you just need to nod, how was getting up at the moment, thatis how was getting up at the moment, that is a real struggle.|j how was getting up at the moment, that is a real struggle. i passed out a lot, but i can do it. i would do it to the test data, because it does not bother me to pass out, i do it so much. i am not going to do anything to make you pass out. it so much. i am not going to do anything to make you pass outm it so much. i am not going to do anything to make you pass out. it is fine, if it will help with the data. 0ne fine, if it will help with the data. one of the reasons we do this is because some people with me/cfs when they stand up, their blood pressure drops and their pulse races to make up drops and their pulse races to make up for it. and we are trying to see if that happens with everyone or just with a few people. so you tell me the minute you don't feel right.
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well done. 0k. 0k, not much of your waist, is that? i have lost a lot of weight. i think i have lost a lot of weight. i think i have lost a lot of weight. i think i have lost at least 12 kg. hannah knows she is at the beginning of a crash. she is hardly digesting anything, not even holding down a glass of water. the me at the moment it is just trying to get as much in and trying to keep it in. at the moment i am eating tiny, tiny pure eight meals which is about a square about this big, two inches by two inches square. —— puree. ijust want some help with that, and they say i need to go to a dietician or have soup, and it isjust... need to go to a dietician or have soup, and it isjust. .. so need to go to a dietician or have soup, and it isjust... so you are struggling to be believed. yes, i
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was sent to a psychologist, and my ca re was sent to a psychologist, and my care was cut off until i have had this assessment with this psychologist, because they were pushing that i had an eating disorder. i saw a different psychologist way back then under children's care, and they were trying to convince me i had 0cd because i was washed my hands too much, and it wasn't because mentally i was trying to do it like i needed to do this five or seven or ten times, it was that my hands felt like they were burning, when you get a really bad sunburn, and your skin sta rts a really bad sunburn, and your skin starts peeling, that is how bad the allergies get. and they don't believe you. the last thing you expect them to say it is "is this real? " it is insulting and it is the problem of me. it is the route. you are fighting the illness and then you are fighting every health
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professional. the research sample is that you are kindly donating is crucial to hopefully one day finding out what me is, and i think it is people like yourself who are taking pa rt people like yourself who are taking part in this trial who are making a difference. so i think you should be proud of yourself. that is the only way we are going to find a cure, or find what it is or treatment, is if we collect data. i am upset that this is still happening, especially to young people. and it feels like in the past five years since i was diagnosed, nothing has changed. in the past five years since i was diagnosed, nothing has changedm is partly due to lack of medical education on this subject, and doctors just not being aware or even confident about how to diagnose this illness. in many cases, they are going for a whole year or even more with no form of management or even diagnosis. and this isjust unacceptable. so we are trying very
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ha rd to unacceptable. so we are trying very hard to get the medical profession educated about how to diagnose this illness, and get some movement. doctor charles shepherd is a leading specialist in me and he knows the symptoms well having suffered himself 30 years ago. when there was even less medical understanding about it. unfortunately the main treatments that are recommended by the nhs are two treatments called cognitive behavioural therapy and graded exercise therapy, and the problems with both of these treatments, we know that this is not a mental health condition, it is not an illness that is perpetuated by psychological factors, and we an illness that is perpetuated by psychologicalfactors, and we know from our own psychologicalfactors, and we know from oui’ own surveys psychologicalfactors, and we know from our own surveys that graded exercise in actual fact makes over 50% of people with this illness worse. some doctors disagree and say these therapies are safe and can help many patients. either way the treatment guidelines are being thoroughly reviewed. we asked health secretaryjeremy thoroughly reviewed. we asked health secretary jeremy hunt for thoroughly reviewed. we asked health secretaryjeremy hunt for an interview, but he said no, and we
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got this statement instead. it has become so normal now for me to just look at the ingredients on a packet. i wouldn't dare just buy something without turning to the back and looking at the ingredients. so, this is what might smoothie usually looks like. —— my smoothie. nutrition supplements have been by far the biggest help in my recovery. but what helps me won't help every me sufferer. 0ne but what helps me won't help every me sufferer. one of the problems is what seems to ease symptoms for one may not work for raw, and i've also started thinking, what if nothing works at all? just how serious can me get? i've heard about a girl
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called merin who had severe me for six years and passed away. i am on my way to meet her mum and sister to find out more about her story and what happened to her. when merin was 15 she woke up —— one morning with swelling on her hands and feet. sometime later this was diagnosed as glandularfever, sometime later this was diagnosed as glandular fever, and the start of her illness. she wasjust a bundle of energy, won't she? she didn't walk into a room, shejumped into a room 01’ walk into a room, shejumped into a room or skipped into a room. you always knew she was there. yeah, danson always knew she was there. yeah, da nson about. she always knew she was there. yeah, danson about. she was very social, a lwa ys danson about. she was very social, always with her friends. danson about. she was very social, always with her friendslj danson about. she was very social, always with her friends. i went off to university literally two weeks after merin started displaying her symptoms with the swelling. when i came home, she was struggling to speak —— speak. the second time came home she was wheelchair—bound. after that, she was housebound. i got to see the contrasts. she couldn't walk. she was only 15, 16. people
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90, walk. she was only 15, 16. people go, what's that? i've never heard of that? they say, yes, it isn't that hooping flu? that doesn't even begin to describe the smallest symptom of it. so it is really hard. she was embarrassed on her illness, which is, like, can you imagine somebody with cancer being a barrister have cancer? it is just ridiculous. with cancer being a barrister have cancer? it isjust ridiculous. she was just 18 there. she cancer? it isjust ridiculous. she wasjust 18 there. she hadn't cancer? it isjust ridiculous. she was just 18 there. she hadn't been outside for probably a year then. she could still be in a wheelchair but she had to be reclined. you can see the tube coming up here, but it wasn't working. it robs the smallest things from you. she couldn't even have a wash in bed, even if i was doing it, because she had so little energy. she was always such a huggy girl, she loved her cuddles. she felt guilty, she said, i can't hug you. she couldn't lift her hands up.
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i can't remember when we told her that she was terminal. she still never gave up that she was terminal. she still never gave up hope. she never, ever gave up hope. she died just ten days after her twitter first birthday. gave up hope. she died just ten days after her twitter first birthdaylj after her twitter first birthday.” told merin, when we knew she was terminal, i said in the future, hopefully, when i have children, she said, told how much i love them even though i've never met and i never will. and i said, they will grow up knowing all of doubt aunt merin, they will know how much you love them and how much you wanted to know them. and! them and how much you wanted to know them. and i would say things, like, you know, there is nobody who could have loved them all, —— more. and just how brave she was. there is now
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in inquest into the cause of merin's. —— merin's death. the family hope it will say me was the official cause of death, to show just how serious it can be. if it is, to three mac will be the youngest person to die from me in the uk. it was so hard. looking at the uk. it was so hard. looking at the photos of merin. she was just like a normal teenager. she looked so like a normal teenager. she looked so healthy and happy. and then to see photos of her as she was getting ill, to see basically, the decline, was... it was really hard. it was really bad. for me, the only relief that i have
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throughout my illness was a diary that i kept. i am getting tired of being tired, i'm getting sick of being tired, i'm getting sick of being sick. i want to run away from my being sick. i want to run away from d being sick. i want to run away from my body and my life. it is so hard to focus on the good when all i want to focus on the good when all i want to do is disappear. i would go online and sometimes i would talk to people with me. i started to notice some people were just literally disappearing, and at first you just assume, they are going through a crash, like i did last week. that's why i haven't heard anything from them in so long. and then a few months would pass and somebody would tell you in the community that that person had actually taken their own lives. although thankfully not many people actually have terminal me, it
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doesn't get to that stage with most people would me, so many people out there who are suffering, they choose to disappear forever. no one there who are suffering, they choose to disappearforever. no one is really speaking out for them. and this is an illness that affects 250,000 people, we think, in this country. it is the most common cause of long—term sickness absence from school. but it is estimated only a quarter of sufferers will be severely affected at any one time. and you have some people, fortu nately, and you have some people, fortunately, who are improving, getting better, it may take a long period of time, but you have people who are managing to return to work, in education. 0ver who are managing to return to work, in education. over a long period of time people can make some significant degrees of improvement from this illness and sometimes return to full normal health. cloud samples are arriving at your‘s first me dedicated by a bank. the project is at the london school of hygiene
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and tropical medicine. it is one of several research efforts around the world bringing experts together to hopefully make breakthroughs. we are trying to find what causes me, cfs, finding abnormalities that happen with people with me, to find a way to diagnose the disease. we need more and more research in this area to be able to fully understand what it is. at the end of the day, we wa nt to it is. at the end of the day, we want to understand why people have these symptoms they have. and ultimately, if you understand what is going on, we can find a treatment that will the effect did in curing people. staff think they are making good progress and have made what may one day be an exciting discovery. but they are cautious not to raise hopes to soon.
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iam going i am going to hospital to find out about another biological research study that is taking place. merin's mum always told me she tried to support me sufferers anyway she could. she has donated her brain for further research and it will be studied here at addenbrookes. i have come to the neuropathology lab at addenbrookes hospital. here they ta ke addenbrookes hospital. here they take tissue donations from people who have passed away. they have actually been able to find something called also a root ganglia night as, which basically means they have found inflammation in the nerves which carry information between the brain and the spinal cord. that is why a proper scientific research is so why a proper scientific research is so important. any time a new discovery is made it is a piece of the jigsaw puzzle which will one day help doctors find out what causes me
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and why it develops in the body the way that it does. if we are ever going to find a cure for this illness this is how it is going to happen. i think we are approaching the stage where we are going to have treatments with at least some patients, they are not going to have all of it, we are not going to be curing it, but we will be looking at some effective forms of treatment. after meeting hannah and sophie and ten three mac's family, i can't really say that life is different for a young person diagnosed with an pot. what i have seen, though, is positive, the research. i now know that there are doctors and scientists who are really trying ha rd scientists who are really trying hard at finding the causes of me, which could potentially change the way which me is treated. the treatments which i have tried, they might not work everybody, but for myself, for people like me, i am able to start rebuilding my life. hello again.
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we are all going to see some warm spells of sunshine this weekend but it won't be dry for all of us. we are going to see some pretty big storms which initially affect parts of southern england, wales and the midlands before gradually spreading further north over the next couple of days. quite a misty start to the day round the downs and the chilterns. low cloud and fog patches extending in from east anglia, and across parts of the midlands as well. high pressure in charge across the north, so it will be dry. further south, the risk of some showers. showers will work in early in the morning across southern england, probably the heaviest of these just to the south—west of london. working towards wales in south—west england before fading away during the morning.
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in the afternoon the cloud will gradually start to break up for many of us with warm spells of sunshine coming through. in the sunshine, highs of 22 in edinburgh, 26 towards london and the south—east of england. it is during saturday evening that things start to get pretty lively. a clump of thunderstorms working into central and southern england, south—west england, probably wales in the south was midlands as well. these storms are capable of bringing 30 millimetres of rain in the space ofjust one hour, so that could bring localised flooding issues. then the storms will gradually push further north overnight. they will probably weaken at the same time. through the night time it will be another mild and muggy night. temperatures falling no lower than 15 or 16 in the capital. cooler and fresher further north. 0n into sunday's forecast. another day of sunshine and showers. if anything the showers will work a bit further north across wales, the midlands, some heavy downpours across southern england, largely speaking both saturday and sunday will be dry across most of northern england and scotland.
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for the most part, northern ireland as well. things will begin to change more on monday as we start to see those showers going further north. we have got a little weather front enhancing the rain as it works into northern england and across the midlands as well. some wetter weather across northern areas of the uk for the holiday monday. further south, probably a bit dry. a few showers. more in the way of sunshine and maybe a slightly fresher feel to the weather as well. still warm, temperatures climbing up to 2a, 25 or 26. a bit cooler and fresher around some of the coast. this holiday weekend, watch out for the risk of localised flooding from these lively, thundery downpours. this is bbc news. i'm lewis vaughan jones. our top stories: exit polls in ireland's referendum on abortion suggest a big win for the campaign to liberalise the law. with the votes still to be counted, taoiseach leo varadkar, who supported the campaign, says it looks like ireland " will make history".
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—— "will make history". handcuffed and charged with rape — the disgraced film producer harvey weinstein appears in court in new york. this defendant is his position, money and power to lure women into situations where he was able to violate them sexually. after five days of protests by striking truckers, brazil calls in the military to try to unblock the nation's roads. also on the programme, excitement builds for the champions league final in kiev, but some fans with tickets won't be able to get to the match.
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