Most patients are full. We are trying to find room for you. Maybe it will happen tonight, but im not sure if they go with the help of a translation apps. The news spreads all the tents, blankets in other essentials of life, including food, are provided here, not by any government agency, but by small volunteer groups and individuals. Border patrol is not providing shelter, food, very little water. It gets down to 4. 00 and 4. 00 degrees celsius at night, and its very windy. A few weeks ago, 2 children were taken out of a nearby camp after spending the night they were both hospitalized for serbia. These harsh conditions violate a long Standing Court order on how Asylum Seekers should be treated. Now migrants rights advocates are taking the federal government to court, saying it has failed in its duty to care for migrants including children, left to fend for themselves in make shift camps like this one. So the attorneys that have brought an action to obligate Border Patrol to provide shelter, food, water, medical care, and other things, especially for children who are here. But really, for anyone who is being held in these conditions, as the Peters Family prepares to spend the night, a volunteer who asked, we not use his last name, phelps, rodrigo, set up a tent. We dont like seeing people suffering. I mean, i think theres a lot of suffering here of family up routed fleeing violence seeking asylum, bound together by low rob reynolds, l g 0 near templeton, california as well. Thats it for me and associates. I remember you can always find a much more than our website was, is there a dont con, ill be back with much more for you here on out a 0 off to the stream. The pick up with the pockets on says its expending everyone who does not have legal documents. That means thousands of off guns, many who were born in park. A sun must sleep, focused on the police did not trace us rise as scans were detained and forced to pay bribes. Near the border with pockets on this comp is ready to deal with tens of thousands of new arrivals. Its a difficult transition to leave everything behind and come to this country. This is just the staging point from here. The Journey Continues to the places of versions inside of on many of guns will leave the exposure and because of pressure tactic to push the kind of bond government to kind of the people who park a sunk cost cutters that like signing the bond, carries out the tax inside focus on leadership is based in a lot of stuff. Pockets on says the measures about the curve and these are the migrants, waterford and some are involved in permanent activities. If he count proficiency, regardless of the legal status, people should be treated with respect. I imagine spending 22 hours of your day in beds having heart palpitations for getting your childs name. Im not being able to speak sometimes. Pretty scary. Well gets worse. Dr. Scott, find anything wrong with you . And people say its all in your head. Millions are leading a pretty isolated existence with very little support a note here inside for their condition, long cove it on. And these forces in this is this train. Okay, heres another day in my life, living with lawn cove, it a video that nobody asked for. The anyway, its got only served up again and todays agenda include a chest x rays, blood work, and getting a heart rate monitor installed. Youre not coming up, so i wake up. I feel like this. I go to bed. I feel like this is not the feet of millions of people the for 1000 plus days of long moving. Am i getting any better . Am i seeing any improvements normally would you be able to currently, there is no tour. Theres just time. Oops, and pers hopes and prayers might not cut it for the estimated 65000000, so called long haulers. Patients who report a list of over 200 symptoms that can sometimes last for months or even years. Could this be the worlds next Public Health crisis . To discuss that, were joining that today. The doctor administering a one professor of Public Health at the university of South Hampton and advisor to the loan cobit support group. She is in hampshire in the u. K. Mark far he a long cove and researcher and associate professor in respiratory physiology at the university of darby in nottingham. And Tracy Thompson will 1st contact contracted cove it in march 2020 and has had long coded ever since. Says joining us from toronto. Thank you. So so much for joining us today. We really appreciate your time. And before we begin this conversation, id like to start sharing a video that tracy sent to us. Heres a look into what her life has been like with loan cove. It is my bed slash, and this we spend about 20 or 23 hours depending on the day side table where i keep all my medications wider, tooth brush toothpaste case, i cant get up that day. And if im having a very good day, i can spend a couple of hours sitting in this chair i looking at the window, are you using my computer . I can tell her it screens that day and theres a little handy phone holder because i dont really have the energy to hold it. And yeah, thats, you know, burning some terrifying incidence. Thats pretty much in my life for the last 3 and a half years. Its very nice lady. Very boring. I dont recommend it. Tracy. Wow. 2223 hours in a day in bed. Sometimes i can only imagine how hard it is and i can only imagine how much this has changed your life. Yeah, its been a huge difference. I had a very active job before and a job that i was very fond of. So i worked in the Restaurant Industries a long hours, lots of mental calculations, lots of physical stuff and lots of people. And i know i have none of those things as well. Um doctor industry is the problem with long cove and the fact that there is this absence of what doctors, co identifiable biomarkers, these measurable changes in peoples bodies that can actually be tested to understand whether or not a patient actually hasnt uncovered. Yes, that is certainly a barrier to have this single test to tell you whether youve got loan cobra though or not. But i think its very important to bear in mind that many Health Conditions are many diseases who have been with us for for a long time. Still dont have that, you know, single by a mock, right . Not and, and that certainly shouldnt be used as an excuse to dismiss or deny treatment and care for people with long code. But its an, its not a unique situation at it, but it also, it, we may never get bad. You know, there is a risk called reaching out as a way to present to buy a marker which will be a 100 percent accurate. So identify loan co with and i think thats all likely in the world of, of medicine and, and on we uh, we shouldnt dismiss we, we think cash should take into account that it needs to address the needs of patients before waiting for such by monica. If it ever happens market you Research Long cove, it how there been advances in our understanding of this disease or. Ready yeah, that has, i think weve made great progress as well as over the last few years, but were still facelift challenges, uncertainties around the ex, especially kind of popular city electrical mechanisms and you know, i have a baby for me for you, mr. Saying i are paying for a single by and ill come over a single explanation. Some things are complex is actually probably beyond outreach, but we also tend to make progress. And understanding that the, you know, the need for patients like tracy and those around the world is now, you know, this is their reality and, you know, theres that urgency for us to get the sooner. Um, so that we can help people trace it. Can i ask you, what would a normal day look like for you today . Sure. Usually exceptional, but uh, yeah. So we go, um, i take whatever medications supposed to take at that time. And then i sort of wait to see how the day is going to unfold because obviously some days i have more mobility, more energy, more cognitive power than others. So on the date that you know, speaker days, you know, i try to go for a walk. I organize my week, you know, prepare to have your phone. Very, very, very ambitious. I might try to do some laundry, but thats, thats sort of like low time this priorities. Um, so i dont average day to priority is making sure i eat something and making sure i take my meds and then it search, you know, depending on the day whats gonna happen . Well then that one thing that seems to baffle medical specialists about loan cove. It is a wide variety of symptoms therapy sessions experience. Take a look. Theresa, can you share with us some of the symptoms that kind of triggered you to think there was something wrong with you and that this could be indeed long cove it . Well, i mean, because i was sort of in the early phase, the, that phrase, lot comes, it didnt, it didnt exist. So i was very much of the feeling that you know, since i wasnt hospitalized since i didnt, you didnt require Critical Care and that i was going to be well in a couple of weeks. And as the weeks and months went on, it actually took me, i think, about 5 to 6 weeks to lose my sites with taste and smell. And that was a profound event because it was obviously your logical where i was eating something and i wasnt congested in any way. And i went from, you know, thinking is it delicious to nothing, just the absence of, of the information going to my brain. And so that was sort of my big like, oh, things are terribly wrong and its been a cascade over. Thats just that. Im just reading this long list of symptoms and the fact that every patient seems to get a different set of them. Does that explain why this disease is still so poorly understood . Yeah, i mean, as long as it has a wide variety of symptoms, there are some, sometimes more common than others that people have discarded that have been many studies now to look at the bright, your symptoms and how they close that together. What we do know that in most people is a some what we call a multi system disease or more than one system in the body. Whether thats kind of your, your general body, your, your, your got, see it on your heart, your respiration longs. Usually some multi system disease and also what tracy mentioned is, is very common about the fluctuating nature of loan co way way you would have some days or weeks or even months or much worse than other periods. And, and theres some people, this is, some of the symptoms might disappear for a while and come back, which is very, very frustrating. And thats why recovery is very difficult to define and long co long coat with an fx. All sorts of things because you think you picked up, you can go back to work full time, do all the things used to do before and then it hits you again and so, and so on. And so, and so is, is quite disabling in that sense as well. You know, in the sense that even in periods where you get back to you on to page and you know, having loved your intuitive age and to get was and youre trying to build your functionality and what and caring responsibility around their mark. I see you not either. Do you agree . Yeah, absolutely. Yeah. Its just our physical renters. I think the biggest challenge for the patients, uh and people trying to, you know, provide support services that people dont call it easy on predictability is the fact that it can be, you know, you can apply to run an upward trend and then very soon youre taking you know, multiple steps backwards and that makes it hard. So for people that tracy to actually be able to plan, you know, that, that days and then weeks and that, yeah, that one predictability, episodic nature is really what creating one of the additional challenges. First, trying to understand the condition alongside to kind of the detail, mechanistic, positive, digital logic and side of it because the directions and integrate nature of the diseases as new inside was multi, multi system a. It is by exactly and when the system start interaction in different ways, the responses are very different in terms of the outputs for the patients. And what we seem very much is that is very personal to, to, to the individual. And weve been researching this book. You know, over 3 years now and we havent seen any patients present with the same profile uh, symptoms or kind of disability. And that makes it hard for us to, to pull together a series of ideas or interventions or support pathways to help patients. A must be very, very frustrating. While researching for the show, we actually came across a wide variety of videos online with people sharing their experience. And this is laura who posted about her long covert journey. I am still surrounded by people who think that cobit is just a cold or its just the flu or its not a big deal. When i literally had all these really intense reactions to just the virus after my body. And youre still acting like its not a big deal. Im trying to be positive, but its really hard to be positive when everythings been taken from you and know it seems to care. No one seems to really see the seriousness of the situation. Tracy, does this feeling of being on her in the sense of feeling on hers . Does it resonates with you . Yeah, absolutely. Um its uh you know, when you start telling people like youre allergic to almost everything youre exhausted all the time. Your heart doesnt work, your brand isnt working like some workers can hurt. People just sort of, i mean, doesnt, its, its no, its sort of beyond belief. And i, on, you know, to try and, and, and, and not be so frustrated with being dismissed this way. I try to remind myself that i dont think that theres anything any way that could be upset to me, to describe what this illness does, then what prepared me for it. I just, i dont other, its just a way to convey it. You know, i know people who have one code that have, you know, the secretary of cancer people looking at babies which is, you know, a pretty physically dramatic experience. And i like this a kick work compared to this. So i dont the sort of because it is everywhere in your body because it does wax and wane and, and can you, sir . Look, you know, i mean, you can tired version of your normal selves. Youre not think these big word markers unless youre using mobility aids to let people know things arent ok and is very honestly, it is very difficult to get people to, you know, sort of generally believe you and thats physically. If they do, i dont even understand why this experience is like, oh, does this mean do many long hours come to you with the same kind of complaint . And we, i think what tracy is describing it in the video, the, the impact of stigma, you know, with the people who are, with long code we, we did a survey of congress to people and, and we found a hole in the levels of stigma. So things like people actually did, you know, experiencing discrimination about 2 sides of people who we surveyed about and one and 10 actually internalize the stigma. So they feel sense of environment of shame because of all the experiences they have and about one and 10 also anticipate this thing that so, so that means that prevents them from actually sharing their experiences with Healthcare Professionals with, you know, their employers, etc. I mean the piece of washer and the videos, tracy hit the heroes because theyre all these stigma. And all of these barriers telling people dont talk about this. You know, you might be disbelieved. You might be dismissed, just go, dont, dont, dont mention that. Try and pretend that everythings as normal or try and label it with other things. And i think people coming forward and talking about it really important. Thats how long colbert call the attention, you know, with that patient a movement. And so, so, but i think its really important for Healthcare Professionals also to recognize that its very hard to people, people and also have a about to so said that very careful about who they tell about loan cope with about the regret it telling somebody about loan co but um so, so there is this barrier and i think i think that needs to be awareness about theres a not an expectation that is like any other illness or, you know, many, many, many elicits how stigma attached to them, but actually loan cope with because of all the pandemic experience weve gone through and because of, you know, its a non specificity as, as weve described, in some cases it comes with this additional stigma and i think we all should be talking about this more. Its very interesting. Many of the patients turn to online groups, for example, to try and get some kind of support. We actually found a very interest thing take on x. This is from patsy smith who says, we arent doing any Effective Research about long copays yet because we havent figured out how big pharma can make profit from it. Mark, what do you make of this . Do the profit prospect of pharmaceutical companies play a role in here . How much i dont know funding. Are you getting right now, for example, for your research it . Yeah, so i think weve been very okay. Uh and so as of attracting visa, shopping, bottom of the main quite a lot. So might just have there is nowhere near enough funding to for a long Carbon Research and to do that well, again, given that to come by states. But as a group, we be really fortunate. We, weve pulled down, you know, over to an off 1000000 pounds worth of research included from pharmaceutical companies, as well as trying to, you know, increase the understanding and the mechanistic understanding. Because thats the only way were going to be able to move towards developing effective interventions as a whole lot of ways. So what weve been look is a great if i speak collectively for full research as we have in, okay that, that, that isnt the case. And with the, you know, theres a distinct shortage of funding and the prioritization of Research Funding internationally to, to allow us to, to banks i guess a 100 long, you know, long curvy to the mechanistic understanding. But ultimately it as a whole patients lab, tracy and theres millions of People Living around the world. And this isnt just about the health of all those people suffering long cove. It also has a Significant Impact on economys world wide or producer joanna hos, talks us through some of the numbers of 65000000 people estimated to have long covert right now. Sounds like a lot of that number is expected to grow to 200000000 over the next 10 years. Thats doubled the number of people suffering from cancer and nearly as high as the amount of people with heart disease. And with so many people stuck at home, unable to work, consider what that means for job markets and the economy. Take the United States according to the us centers for Disease Control and prevention around 6 percent of American Adults are experiencing symptoms following a cold with infection that have lost it for months for years. And it might not result that old dots according to scientific journal nature for you as economy, more than 3 trillion dollars over the next 5 years. Another example, australia, the Research Group in economics and policy, their estimates that at least 40000. 00 australians are currently unable to work as a result of some code costing to countries g d p 6000000000. 00 us dollars a year. And those numbers are probably conservative. Not only is the prevalence of long cobit expected to be much higher, most studies base their calculations and the number of long holders matter of work for you to take into account. For example, the Economic Impacts patients decrease productivity or the decreases spending power as a result of medical costs. Well then the total bill comes in, not higher. Exit. We talk about 65000000 people estimated to have what long cove it right now with that number is projected to grow to 200000000 in 10 years. That is the whole population of my home country, brazil, for example. And that is way too many people outside of the job market to stuck at home, not being able to work. I mean, the impact on the economy is going to be quite huge. I mean the screen, do you think governments are taking the situation and the staggering numbers seriously enough . I dont think government is taking the situation seriously enough and also the fact that we still have co would and you could still get loan cobit, its not something in the pause and, and were not really paid. And, you know, taking the prevention reduction of the cases, zip code would seriously anymore. Were not talking about locked down and people staying at home. Were talking about things like, you know, much clean around, you know, as alteration and better ventilation in work spaces. And i also always do we know now there is consistent evidence that box in ation. Filled with vaccination is linked to reduce risk of getting along co. But um, so thoughts about message, i think loan co but needs to be at the forefront of. And we think we kind of talk about a, in, in, in terms of, you know, been released jacobus in terms of vaccination in terms of trying to reduce other number of cases. But also i would like to point to, i know everybody with long coat with will be out of what i can. I think employee is have these responsibility of allowing some flexibility, allowing those changes that people can, you know, make and adapt to in order to, you know, be productive and carry on with what, what, you know, with what in a way that suit someone obviously with that there is a huge help and the quality is because we know that maybe, you know, some jobs are much more, less flexible, you know, again, a manual jobs, other jobs and other and some other jobs. For example, i have experienced long co would and you know, go there for in 2020 and i was lucky enough because in my job i could be flexible in terms of, you know, how i do my job sitting at a desk trying to kind of have some adjustments, uh and, and i, i recognize that many, many people with long coat with dont have this flexibility. So that will be completely out of jump. And i think employee is gonna most need to start looking at thought seriously a tracy, if you dont mind me asking what kind of support are you getting right now . I mean, you mentioned your, your, your homework. You used to work long hours in, in, in restaurants. I believe you were a chef. So can you tell me, now how, how are you . How are you getting by a decline on the kindness of strangers . I suppose i started living off of fundraising for the time being and and along currently a Service Learning community at large has been very supportive of helping me stay house. I have lost, as i said, pretty much everything i do kind of sort of do this budget wise or come back to this like 65000000 people and the stigma. I think because i think everybody who is dealing with long kobe, who is like myself, sort of very public about their struggles, probably knows at least one or 2 people secret, long hollers that are not public and theyre or r kelly. You know, i got a couple of friends, right . Telling me about the difficulties theyve had or you know, Ongoing Health problems. Theyve had sent their coping section, but they dont want to be described as, as long as they want to put that label on themselves. And so. Ready they dont with their Healthcare Professionals, and theyre sort of not making you that connect. Were receiving certain bites. You access to the location list sometimes, and mortality um, you know, in the week of this for me ongoing pandemic. And so i think that like a 65000000 is a large number, but i dont know, its really sort of capturing the, the brand of how this is impacting people. And again, the number of people who are not making the connection and are or not willing to obviously as we talked about for statement come forward and say this is whats happening to me, mark, i believe you want to jump in or yeah, just as just inside of the completely agree with tracy, i think the 65000000 of the other ones that were aware of and the ones that we know about. And i think internationally, it has been a scathing back of testing and vaccination, etc. And as a result of that, you know, people might not be connecting the dots between having you know of a cold or flu like illness. And you know, im not feeling well for a period of time as to, as i think the prevalence along categories measuring much higher then you know, to the switch to statistics that weve got at the moment on the thing. You know, as time progresses, the prevalence will only increase and i think you mentioned to, you know, 200000000 in, in 10 years, i think with the current approach to Public Health messaging and the awareness around one country that could actually be more than that when the time arrives. Well, it is indeed a very big story, one that we will continue to follow over here. I would like to think theres 3 of you for joining us today, tracing the screen and tomorrow. We really appreciate your time and thank you very much for watching. 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