she was embarrassed at her illness, which is like, if you imagine someone with cancer being embarrassed they have cancer, it is ridiculous. me effects around 250,000 people in the uk. the second he starts getting loud again, obviously he is out the door, because it is just agony for her, and 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. it often develops in your late teens or early 20s. it is more common in women, and even the government accepts it is poorly understood. doctors just not being 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. 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. you are fighting an illness, but then you are fighting every health professional. i'll 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 still 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 wasn't meant to be. when i was 17, i was diagnosed with glandular fever. it then turned into something called post—viralfatigue, which, because at the time i kept pushing and pushing my body, it eventually led to something called me. the way i describe it to my friends use, imagine 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 fatigued, i would sleep most of the day, and the worst part was no one could tell me why my body was broken. over the years i have started to get better, but because when i had me it was such a dark time in my life, i never wanted to think about it ever again. but as i have been getting better, i have started to wonder what life is like for other young sufferers of me, you know, and ultimately i'd like to find out, is there 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 flare in symptoms. i know when i used to crash with severe me it could be triggered

by the smallest use of energy, like having a shower for ten minutes would crash me out for days or a week. i think thelongest crash i ever had lasted up to six months. so i'm expecting sophie to be very drained and very exhausted today. hello! i apologise, i am dripping wet. emma, nice to meet you. this is lucas. hi lucas! is this what you do every morning for sophie? does lucas know to be quiet... yeah. when i take him in there, he knows now that i whisper and i am always like, (whispers) all right, be quiet, hi mummy, hi mummy. and he does that, he starts to do that and he doesn't raise his voice too high for a couple of minutes, they are the couple of minutes that she gets to see him.

the second he starts getting loud again he is out the door because it is just agony to her. and 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, but thinks it may have started in childhood. (whispers) morning! at the moment she can't get out of bed at all. (whispers) hey! it can take hours for sophie to wake properly. phil will come and go several times to wake her up slowly. (whispers) morning, sweetie. sorry. she constantly wears eye masks or sunglasses and cannot bear any light at all, which is why filming is difficult. (whispers) is it ok if i let the camera lady in? oh, yeah.

0k. can i put this sidelight on for you? there's one colour which sophie can bear better than any others, but she still has to keep her sunglasses on. only one person talks at a time, like don't talk over her and things like that, just keep very quiet, very slow movement, that should be all right for her. they're doing the bins outside, so that's going to affect her hearing. 0k. how has your friends and family dealt with your diagnosis? sophie's crash started three weeks ago. and a rapid decline into finding light more and more painful. having cognitive dysfunction

or brain fog, which leaves you not remembering your own train of thought, and muscle spasms leaving her literally floored, and more reliant on phil. how often do you get to see lucas, is it every day? clattering outside.

do you want me to wait until this stops? 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. it'sjust hard because i want to help, you know, you want to see her with lucas, but she's clearly, she's too overwhelmed just lying there and hearing lucas playing downstairs. it's just really sad... my heart goes out to her. i never thought about having

severe me at the same time as having a young child to look after. that's such a difficult situation. and...| struggle even to think about how she copes. when the doctor diagnosed me with me, at 19, i was relieved. i remember feeling "0h, thank god they found something". because at this point i had lived life 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 a sofa. a lot of people told me upfront, don't bother, don't waste your money or your time pursuing these treatments, because there is no cure out there for me and nothing works.

even if that was true, i couldn't 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 got two sets of data and blood from her already, so this will be the third set. and that way we can watch how her illness progresses and what it shows in the bloods 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 that is what this study is all about. hello. nice to meet you. how are you feeling today, hannah? not great, i have been doing a lot over the past week, more than usual. hannah, i don't know, and you just need to nod, you don't need to do anything further, but how is getting up at the moment, that is a real struggle. i can pass out a lot, but i can do it. i would do it to the test data, because it doesn't bother me to pass out, i do it so, so much. i am not going to do anything to make you pass out. no, it's 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 for it. and we are trying to see whether that happens with everyone, orjust with a few people.

ok, so you tell me the minute you don't feel right. well done. 0k. 0k, not much of your waist, is that? no, i've lost a lot of weight. i think i've lost at least 12 kg. hannah knows she is at the beginning of a crash. she's hardly digesting anything, not even holding down a glass of water. for 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 pureed meals which is about a square about this big, two inches by two inches square. all i want is some help with it,

and they say i need to go to a dietician or have soup, and it is just... so you are struggling to be believed. yes, i was sent to a psychologist, and my care was basically cut off until i had this assessment with this psychologist, because they were pushing that i had eating disorders. 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 washing my hands too much, and it wasn't because i, 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 on fire, or burning, as in, you know when you get 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?" is to question.

it is insulting and it is the problem of me. it is the root. definitely. you are fighting the illness and then you are fighting every health professional. the research samples 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 part in this trial who are making a difference. so i think you should be proud of yourself. because that's the only way we are going to find a cure, or find what it is for 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. it 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. so in many cases, they are going for a whole year or even more

with no form of management or even diagnosis. and this is just unacceptable. so we are trying very hard to get the medical profession educated about how to diagnose this illness, and get some movement there. dr 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 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 cbt and graded exercise are safe and can help many patients. either way, the treatment guidelines are being thoroughly reviewed. we asked health secretaryjeremy

hunt for an interview, but he said no, and we 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 my smoothie usually looks like. nutrition supplements have been by far the biggest help in my recovery. 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 all,

and i've also started thinking, what if nothing works at all? just how serious can me get? i've heard about a girl called merryn who had severe me for six years and passed away. i'm on my way to meet her mum and sister to find out more about her story and what happened to her. when merryn was 15 she woke up one morning with swelling on her hands and feet. sometime later this was diagnosed as glandularfever, and the start of her illness. she was just a bundle of energy, weren't she? she didn't walk into a room, shejumped into a room or skipped into a room. you always knew she was there. yeah, danced about. she was very social, always with her friends. i went off to university literally two weeks after merryn started displaying her symptoms with the swelling. when i came home, she was struggling to speak. the second time i 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 go, "what's that? i've never heard of that?" they say, "yes, isn't that like flu?" that doesn't even begin to describe the smallest symptom of it. so it's really hard. she was embarrassed on her illness, which is, like, can you imagine somebody with cancer being embarassed to have cancer? it's just 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. i can't remember when we told her that she was terminal. she still never gave up hope. she never, ever gave up hope. she died just ten days after her 21st birthday. i told merryn, when we knew she was terminal, i said in the future, hopefully, when i have children, she said, tell them how much i love them even though i've never met them and i never will. and i said, they'll grow up knowing all about aunt merryn, they'll know how much you love them and how much you wanted to know them. and i would say things, like, you know, there's nobody who could have loved them more. and just how brave she was. there is now an inquest

into the cause of merryn‘s death. the family hope it will say me was the official cause of death, to showjust how serious it can be. if it is, merryn will be the youngest person to die from me in the uk. it was so hard. looking at the photos of merryn. she was just 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 bad,

it was really bad. for me, the only relief that i had throughout my illness was a diary that i kept. "i am getting tired of being tired, i'm getting sick of 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 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 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 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, 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. over a long period of time people can make some significant degrees of improvement from this illness and sometimes return to full normal health. hannah's blood samples are arriving at europe's first me

dedicated bio—bank. the project is at the london school of hygiene 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 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 be effective 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.

i am going to addenbrookes hospital to find out about another biological research study that is taking place. merryn‘s mum always told me she tried to support me sufferers any way 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 take tissue donations from people who have passed away. they have actually been able to find something called dorsal root ganglionitis, which basically means they have found inflammation in the nerves which carry information between the brain and the spinal cord. that is why 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 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 merryn‘s family, i can't really say that life is different for a young person diagnosed with it. what i have seen, though, is positive, the research. i now know that there are doctors and 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.

although many of us have been enjoying lots of warm and sunny weather this bank holiday weekend so far, other areas have been hit by violent thunderstorms. yesterday afternoon through the midlands, we saw that frantic conditions of violent storms brought some flash flooding. this morning starts off cloudy across eastern areas, but the sunshine is in abundance across many parts of the country away from the east coast, where we will hold onto the cloud and also the misty and murky conditions. quite cool along the eastern coastal areas, but elsewhere, a very warm day with lots of sunshine and the threat of a few thunderstorms developing from east anglia across southern

parts of england into wales. some areas will stay dry. this evening, we see the low cloud and mist roll back inland again from the north sea, so a grey and murky night for many. the threat of some showers or thunderstorms could clip some southern and eastern parts of the country. it will be a warm and sticky night for many. on tuesday, again, a bit of a grey start across the country away from the west, but that cloud should burn back to the coast again with an abundance of sunshine in the afternoon, when it will feel pretty warm again and quite humid, more so across the south, where the humidity and heat could spark off further thundery downpours. on wednesday, we will see a more organised band of rain pushing northwards. this could be quite thundery. stay tuned to the weather forecast as there is still some uncertainty. it will feel warm and humid again as much of central

and southern parts of the uk. scotland and northern ireland fare best in the sunshine. and it will be warm. on thursday, that weatherfront which brings the heavy rain to central and southern areas on wednesday will move northwards, so it looks like parts of scotland and northern ireland may get some thundery showers through thursday. there is also a return of further downpours developing across more southern areas, but there is uncertainty on whereabouts these storms will hit, so you will have to stay tuned to the weather forecast. that said, there should be good spells of sunshine around and it will still feel on the warm side, with temperatures reaching the low to mid 20s celsius. for the rest of this week, it is looking warm and humid, particularly in the south. there will be sunshine, but always the risk of further downpours. this is bbc news.

the headlines at four. a man is killed after flash flooding in the west midlands with some areas getting more than a month's rain injust one hour. the clean—up operation is under way, but weather warnings remain in place for several parts of england. a migrant from mali is to be made a french citizen after scaling a building in paris with his bare hands to rescue a dangling child. i asked him, wasn't he frightened for his own life. he said no, at that moment he wasn't thinking of himself, he was thinking of the child. as soon as he started to climb, he was scared that the child would get tired and let go. the labour partyjoins calls to change abortion laws in northern ireland, following the referendum in the republic. from sparkling sea to magnificent moorland, the 840 bus route from pickering to whitby