during a speech on national day. now on bbc news, it's time for spotlight. living with long covid. tonight on spotlight, we hearfrom people suffering with long covid. stories of resilience but also desperation, pain. and we ask, 18 months into the pandemic, why are they still waiting for the stormont executive to provide long covid services to help them? my name is zoe mcnulty. i am 27 years old, i am from derry, and i caught covid at the very end of march — 31st march 2020. my symptoms with long covid are, chronic fatigue, asthma, brainfog, memory problems, intolerance to heat, dizziness, heart pains, palpitations, high blood pressure, high pulse, aches and pains, headaches, nausea. pretty hard to count. the zoe mcnulty before i had covid, i was very adventurous. i lived in italy for nine months. i was a nanny with this family. i had graduated from my masters in december 2019 and then i was hoping to travel and teach in different countries. use the last of my 20s to just be free. i think for certain that i caught covid when i worked in a pharmacy. after covid, my body still didn't feel right. it felt like covid took my perfectly healthy body and brain and gave me a new body thatjust didn't work and a brain that just couldn't function. like, ijust couldn't explain it. like, i would try and put some socks away in a cupboard and i would just be lying on my floor and i would be, like, i don't know how, like, how am i supposed to get back up off the floor? like, i'm so exhausted. ijust remember that summer thinking "i don't think i'm ever going to get better", like, "my immune system it's just got so destroyed by covid." so long covid has had a long impact on my relationships. my impact on my relationships. ij�*i boyfriend impact on my relationships. m: boyfriend and impact on my relationships. m; boyfriend and i, we were together for almost three years and he could not understand that because i was not hospitalised from covid, how can i be so bad? so the relationship had to end because i couldn't have anyone around me who didn't understand what i was going through. when i got to the year mark, and so many things that happened before that, during that year, it can be really tough. mentally, it can be very... sorry. it'sjust so hard sometimes. sorry. yeah, it can be very sad. you kind of grieve the person that you were before and, yeah, mentally, you can only go on for so long before itjust becomes a bit too much and a bit overwhelming. zoe mcnulty is one of around 20,000 people in northern ireland thought to have some form of long covid. but what is this illness? scientists are still trying to establish a clinical definition. but for now, the uk guidelines define it as a condition that develops during or after the initial infection, continues for more than 12 weeks, and its symptoms can't be explained by an alternative diagnosis. so far, the illness has had more than 200 potential symptoms linked to it. professor sir terence stephenson is carrying out research into long covid. he hopes the number of recognised symptoms can be narrowed down, but so much about the illness is still unknown. if we think of other viruses that are well recognised to cause persistent problems — like glandular fever, like hepatitis — they affect relatively small numbers of people. it's the size of the problem that's different this time. a recent uk survey found more than one in ten people were self—reporting with long covid symptoms, 12 weeks after first being infected with covid. and one in four of this group said they were still experiencing symptoms at least a year later. two—thirds reported the condition was impacting on their ability to carry out day—to—day activities. there is still no answer to what causes the condition. many who've developed long covid didn't have a serious form of coronavirus and weren't hospitalised. my name is ashleigh bachelor. i'm 3a years old. i'm originally from ballygowan and now i live in edinburgh with my husband graham and my daughter mila. life before covid, i was pretty active. sport and physical activity was always a big part of my life. i played national league hockey week in, week out. i represented ulster whenever i was at school. i was manager of the scottish women's over 35 team. climbed kilimanjaro. i like cycling. just love being active, love playing sport. put a ball in front of me and i would've chased it. so today is sunday. i look and feel like rubbish. i'm tired, i've got a stonking headache — like a real tension headache right up here. i haven't been sleeping well at all. i got covid in march 2020. i went on to develop long covid, and my symptoms have included chronic fatigue, chronic pain, tinnitus, pins and needles, peripheral neuropathy, brain fog, dizziness, light—headedness, memory problems — pretty much every system of the body has been affected in some way, shape orform. it's notjust tiredness, it is debilitating fatigue. the chronic pain for me is a big one. it's like something screaming in your head, just all—over body pain when you're awake. a lot of my hair fell out at the beginning — that was a really common one for a lot of people. so 35—40 different symptoms, yeah. going from where i was and playing hockey every week to now being in a wheelchair was a hard pill to swallow. my husband and my daughter were going out at the weekend and going to parks, etc, and i wasn't able to join them because i would be too breathless or be too dizzy. so i now use a wheelchair from time to time. i use it for going places that i wouldn't otherwise be able to. there's good days and you feel like you're on the up and you start to have a positive mindset, and then all of a sudden, you crash and you relapse. my daughter was due to turn one at the end of november and then obviously, it would be christmas. i, at that point, didn't know if i would be alive for my daughter's first birthday. my body felt like it had been absolutely riddled with i don't with i don't know what. something wasjust going for everything. so i had bought and wrapped all birthday and christmas presents by the beginning of october, through fear that i might not be there and at least there would be something there for herfrom me. um...sorry. putting so much strain and so many obligations onto my husband. we both worked in pretty well—paid jobs and all of a sudden, i was then receiving stat sick pay. just feeling like a massive burden to everyone around you. my husband, he's been great. he has really stepped up. he has been emotionally supportive. mila has been a tonic throughout all of this for me. you know, she's kept me going. as well as that, we've relied on my mum coming over from northern ireland frequently. so maybe two, three, four weeks at a time she will come and stay with us. i am going to get soppy. my mum has been my rock. my mum has always been my rock. to see the change from how active ashleigh was is just, oh, unbelievable. itjust saddens me so much, and i have cried. i've cried — not in front of her, obviously — i've cried at home. you just feel her pains and you feel the lowness in her heart and in her voice. without a shadow of a doubt, long covid has been far worse than covid. with long covid, it'sjust a living hell with no real end date to aim for. no light at the end of the tunnel. i think i need to have hope for my own mental health. if this is it, how can i best live my life, how can i still be me? even though it might not be bouncing up a mountain or kayaking down a river, you know? there's got to be other things out there that can help me or make me happy. one of the striking things about long covid is how ill people can be, while outwardly looking well. however, spend some time with sufferers you start to notice the signs — like the crippling tiredness and a vacant stare that appears in some peoples�* eyes, even after only very small amounts of exertion. it's not known how long this condition may last for some. i think that's impossible to answer at the moment. what proportion will actually get better and what proportion are left with an ongoing residual illness that goes on and on and on — i think it's just too early. you can't read the end of the book yet — we need to let the pages turn. it's not only adults that are suffering. as a paediatrician at great 0rmond street institute of child health in london, sir terence stephenson is leading the largest study in the world to date into long covid in children. it will continue for two years, but the first findings have just been published. somewhere between probably one in seven and and one in 14 young people who've had the covid virus might be left with persistent symptoms. they could be as many 30,000 teenagers in england. now, that's not a trivial number and some of those will be very severely affected. my name is imogen. i am 13 and i am from county down. i got covid around the end of march 2020, you know, as schools were about to shut. and at first, whenever i went to get that checked, they weren't doing covid testing on kids so they wouldn't do a pcr test, they wouldn't do a covid test on me, so i wasjust told to treat it like the flu, but the flu ended up not going away. the fatigue started pretty early on. it was so hard to do daily tasks, getting dressed in the morning. i would sometimes get dressed in tears i could barely see, barely move. school was probably the hardest thing for me. my grades were dropping — and usually i get good grades in school — and i was really angry and upset. i remember there was one german test i did, just a vocab test that we do, and i got every single answer wrong. what i wrote didn't make sense. i was almost asleep — i couldn't see straight when i was doing it. my first serious blackout was whenever i was with my granny and granddad. my parents were out and it was just us three. and i think i was standing up to show them where the bins where and then i collapsed. and it was really scary. but as i went to a paediatric consultant and she started doing specific blood tests, it started to come back that i had low iron, low folic, bad blood pressure. i had extremely low blood pressure, my heart was beating irregularly. i had to go to a private consultant to be able to get an antibody test because they weren't doing them on the nhs for children. i feel as if, if i hadn't went private, um, i would still— i would be worse now. my mum and dad have supported me through everything. they were the ones that battled to get me to the private doctors. they've fought the same battle with me. i'm very happy i got my vaccine. the only reason i was able to get that was because i had a diagnosis, they knew what was wrong with me. and i'm overthe moon about the fact that 12 to 15 year olds can get the vaccine now. and it's just an amazing thing. and you know, get it, if you can. if you want to, you know. if you're scared of needles, that's fine, so am i? before covid i took part in a lot of sports like golf and cricket. things aren't back fully the way they were. and i think it's going to take me a long time to get back to where i was. but i think that i am getting better. while imogen is recovering, other people who got the coronavirus back at the very start of the pandemic are still going through their own, often unseen, daily battles with long covid 18 months later. including one man who fought to save his life, when he got the virus back in march 2020. i'm mark mcclurg, from newtownards. i'm the pastor of ards elim, i'm happily married to claire and we have three lovely children; lilliana, josiah, and judah. i've been suffering from covid for 18 months, i was actually in church preaching, i couldn't move. i was just stuck to the pulpit. i had chest pain, back pain and i knew i was in trouble. i probably was one of the first people in northern ireland to contract covid—19, as i was one of the first ones in the ulster, in the icu, with covid—19. and i made a video, just to try and help people, to explain to people what i'd gone through, �*cos i didn't want anybody going through what i'd gone through, because that covid made me feel like i was drowning, i was in pain, i was struggling to breathe. this covid virus is deadly and dangerous. this covid virus wants to kill you and wants to take all the life out of your lungs. i realised that i would have long covid when the follow—up interview with the consultant was explaining that the symptoms that i have could last over a year. there's three of them that are really hard on me; chronic fatigue, breathlessness, and like a brain fog. you just have pains just for no reason. long covid's had such a major impact on all my body. since i've had covid, i've been just constantly backward and forward with hospital appointments or gp appointments. in february, i was noticing heart palpitations. i was getting more pains back in my chest and back. i ended up with a pulmonary embolism, or clots, in the lungs. i've been asked by many people do i think that the clots were to do with the covid or long covid, i'm not sure, but i've had this since i've had covid. right here, mummy�*s going to count this time, go and hide quick. this has had an effect on claire but she's so loving, she's so understanding. having two young boys at 3, you just wanna go out and play football and run after them and play out with them but i can't do that. i just find myselfjust constantly getting out of breath and i have to sit down, and that's something that was so special to me, just being a daddy. i think the boys don't understand it but lillieanna will say, "daddy, is that the bug making you unwell today?" so, it's just so lovely, when she says that, she'll come and give me a hug and snuggle into me. she just wants to help me. there's a lot of duckies in there. being 42 and suffering with this is soul—destroying, it's discouraging. my faith is what's carried me through, from that moment in icu right to this moment in time and the amount of people who have continually prayed for me, that's just so humbling for me. i'm just hoping that one day i will get better. there is now growing pressure for the nhs here to provide specialised services for those battling the after effects of the virus. across england, there have been long covid clinics open since late last year. with the focus on the enormous effort to tackle the pandemic through lockdowns and the vaccination programme, many sufferers of long covid in northern ireland have been left frustrated by how long it's taking to provide support for them. so just what is the stormont executive going to do to help? i think it has been a difficult process for me to get help i fully understand that, you know, how stressful like the past year or so, the absolute strain that the nhs and gps have been under, but i definitely feel angry. you see people over in england, who are like, going to long covid clinics and they're doing really well, and you think, i think, seriously, like, no, no offence to the northern ireland government but they �*ve been happy to leave me sitting here for the past 16 months. if i had had a long covid clinic months ago, could i have been better by now? like i'm essentially just left in the dark, like, figure it out on your own. thankfully, there are facebook groups set out there, and there was, there is one specifically for people in northern ireland so we all kind understand the frustration and anger we all have. with no specific nhs services in place, for over a year now northern ireland chest heart and stroke has been running support programmes for sufferers. as far as we could see there was nothing else happening in the community. we had the expertise through our respiratory team and we wanted to step up and do something. we, as a charity, understand the pressures that our statutory colleagues are under. but it's been very frustrating for us as well because last year we told our statutory colleagues that we were offering this service, we wanted to be part of the solution around those discussions of what long covid support was going to look like. and here we are, you know, on the cusp of october and there's still nothing firmly in place. the department of health told spotlight it anticipates new long covid services will be established by the end of october. it indicated a number of long covid clinics will open but it couldn't say exactly where these will be. and it said the services will be designed for adults only. the need for support for children will be kept under review. it's estimated around £2.5 million a year will be needed for long covid support, but stormont hasn't yet agreed a health budget to ensure the funding beyond march next year. and the department of health has admitted to spotlight that it also hasn't yet collected the data required to assess what services are actually needed. even though we're now 18 months into the pandemic. chest heart and stroke questions how anyone can know what services are needed and where, and how much they will cost, if the data hasn't been collected. i suppose it's part ofjust a very complex picture within our health and social care system and the problems that were already here before long covid happened. but i think data collection is something that we are, 18 months into the pandemic now, there, you know, surely should be some sort of a coordinated approach there and how can the department even know that the money that they've ring—fenced is going to be enough? the department said there are difficulties collecting data on long covid, because of a changing picture where some people recover but others become ill. it added, data is now being gathered but it will be a number of months before there is enough to analyse. it expects the collection of data will improve once services are fully up and running. zoe and dad david are trying to stay positive. even if the pandemic was gone and even if everything was back to normal, you're still not back to normal. i'm not back to normal. yeah. but, just, you may as well be positive, like, there's no... you can't get any worse. i'm in my 205, your205 are just for really loving life, having fun, and i just miss out on these opportunities, that other people can have, because i caught covid. how many more years do i have to wait for research to come out and, and would they be telling me, for what's, what exactly is wrong with me, what did happen to my body? there is the fear that this could be forever. it worries me that this could be my life. hello. for many of you, sunday is going to be quite a pleasant day to get out there and enjoy the changing autumn colours, most parts of the country should be dry, a fair bit of sunshine as well, more cloud in the south compared with what we had on saturday afternoon and for all, something a bit fresher, the muggy air being swept away. this cold front pushing its way southwards and eastwards allowing temperatures to drop, but it will still be quite pleasant out there. the sunshine overhead will be cooler, northern ireland, scotland, northern england, temperatures down into single figures and a cool start to the south—east, where we could see morning sunshine in the south—east. mist and fog but weather front bringing the fresh and will be sitting across central southern parts of england and wales. patchy late rain in the morning, that should clear, all but the far east of kent by the mid afternoon and sunny spells, light winds for the vast majority. more cloud in the afternoon for scotland and northern ireland and a few heavy showers where we will see the strongest of the winds and a gust of a0 mph. in the sunshine in the south, not as muggy and humid, but once that sun is on your back it should still feel quite pleasant. into the evening and overnight into monday, clear skies around, a few mist and fog patches but mostly clear and dry and even cooler nights to take us into the start of the new week. these are the city centre temperatures in rural areas, down to single figures for one or two. going to a new week in a cooler note, a new trend from what we have had recently, the exception to the dry story will be across the north and west of scotland, patchy rain here and we could see some of that at times getting to northern england, a lot more cloud in the northern half than the southern half and we will receive the best of the sunshine, temperatures continuing to drop a little bit after those cooler nights, but as we go through monday night into tuesday, highs close by but it is not quite with us, allowing this weather front to push its way south, introducing a lot more cloud across northern and eastern england for tuesday, one or two spots of rain and showers without, but most places will be dry, sunny spells around, feeling cooler down the eastern coast, and shelter to the west where you get any sunny spells, it should feel pleasant. through the rest of the week, most places will stay dry, temperatures in the mid teens, chances of rain into the north as we go into next weekend. see you soon. welcome to bbc news. i'm alice baxter. our top stories: face—to—face talks have taken place in doha between senior us and taliban officials as mass funerals are held in afghanistan for the victims of friday's kunduz bomb blast. plunged into near darkness: lebanon suffers another nationwide power cut amid an ongoing economic crisis. taiwan says it will work to hold fast the frontlines of democracy and freedom after china says reunification must be fulfilled. the chancellor of austria, sebastian kurz, says he's stepping down to fight corruption allegations. and porridge with a twist: we will speak to the runner—up of the world porridge making championships.

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