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oh a as, as that's pretty much the courtesy, it's like the plug, spin, polled, making the switch has just been turned off. so therefore, just on this, imagine being at the amusement park and suddenly there's just noise again, or all the lights go out to clean, the carousel stops that music disappears or you're disoriented in your fall to face . and you can't do anything about all the pieces to begging tune comes soon. the sweetest congregations at austin. i felt deathly ill for 8 years to show

that i know my body has changed and this condition is now irreversible. not in the evening. i often sat in despair telling my boyfriend, but i can't understand why nobody can find anything of new management fitness. interesting chem, communist mothers, brooklyn's is rice. my, when it's but i can't even get out of bed was kind of movement from i'm on my leg should react and there is no paralysis to sleep. but i can't find the energy to swing my legs out of the bed. and i'm short of breath. the cut i have the strength to use my lungs as to mom. so desert mishma in that complex can't even complete a sentence without taking a breath. bill. just unfold francis natalie,

financial and foolish dick liam. of course there's a piece of life missing them, especially when you see what others my age are doing. i wish it hasn't affected me as badly yet. but i still have bad days where i can hardly move. my whole body hurts ish minutes and it makes me afraid that it will become a permanent condition. ah, does look. i'm so into cooked deluxe, which don't fit eileen brown. i'll flip girl and sonya co. 3 of over 100 patients who answered our request for interviews with the german m e. c. f. s. society. they were all willing to tell us that personal stories. the strong response makes it clear just how much suffering and despair the

disease has caused them. ah, we begin our investigation at the genre, t a hospital in berlin, common shopping bogan, has been researching emmy cfs for years to come master on cookie dalton for him. yet fancy, fancy hits, bookish to my background, isn't on college. it does. and in 2020 technology has now allowed us to get a detailed understanding of so many disease mechanisms that we can use them for specific treatments for, for the know this also applies to neurology and the accountant to, to another. but with this disease, we know about it as much as we did others 30 or 40 years ago. for christiane von, the overall number of scientists working on this disease will drive is very small in relation to the disease as frequency and kind of a lot to 100 of us. try to conquer. 17 to 24000000 people suffer from emmys

cfs around the world in germany, an estimated 300000. and in france, around $250000.00 women are more frequently affected than men. scientists assume that at most, only half of those affected have been diagnosed school student who was the challenge, impartial, mostly, i'm disappointed wash and coin does. i'd never imagined that i could be left. so alone with this illness. i didn't press a dose animal. there's not only a lack of interest and but a lack of understanding mudding mom, why when you speak to politicians, they think you're just an isolated case until but you're not good. and the worst thing is that you gradually disappear in 2018 or my neighbors thought i had moved away from little homes. welcome

to the sixty's friends. so tuba, today's the 26th of october and i had been getting progressively worse since last night. and i couldn't do much to day and spent most of the day lying down even the slightest exertion was too much of fear for me. emmy cfs stands for my allergic and says, hello my a lighters chronic fatigue syndrome. a complicated name for a complicated illness. debra, this is olga show to the tim, my al jake refers to muscle and in cipher. my litres of is an inflammation of the brain and spinal cord marks as is all kinds of guns. and the term is unfortunate because in most patients there is no evidence of inflammation in the classical sense is not my isn't let's english and god was flight 1000 foot to normal. it was an attempt to give it a more appropriate name in 2015 and disaster mich exertion,

intolerance disease. the last of intolerance a candle is naturally offsets cumbersome, but it better describes the cool problem and is probably my best. and, and is this the, those who suffer from this illness have very low energy results and can no longer tolerate exertion on the left from mythology, it is there are a completely inexplicable physical reactions. your bones hurt so much that you can't get up in the morning, like the flu, so you feel weak, you're feverish, your muscles. ike. ah, roughly are teeth or our teeth are used to be active, very active listings and not just as a police officer on the street making arrest, even when things got rough water. my private life was also very actors. let's just disappear. doesn't uncompleted cannon. and

i lean got mano, nucleus is 2 years ago, and she hasn't been the same since she can only occasionally go to school. her parents are mystify by what's happened to their daughter was she was on summer love. she always used to go out with her friends, was a scene that she just exercised all the time. she used to work out here at home to work out go, she can't dance anymore of a gun. it's a really bad hold. but this one's was, i don't her as a parent, you are helpless if you don't know what's causing it was and what you can do to help an aunt when have you tried to be encouraging and say come on, let's go outside. good. let's take the dog out and come with us again. love or no,

i can't. i don't want to do that. he can be a bit much and before ever this one. and then if i had to describe what the illness feels like, i compare it to a battery and the said, mm hm. and a healthy person gets up in the morning with 100 percent and uses it up over the day. in the evening. they go to bed and it recharges overnight, so they can start the next day with a full battery that i'm, he doesn't work like that for us. we only have a few percent to get through the day. in addition, i took overnight or during rest periods, that are batteries don't really recharge at all. any health issues, we always have to work with only a few percent in our batteries. our bodies are under supplied. we just don't have enough energy. i saw nicole, a former communications designer also caught mano,

nucleus is even though she recovered, she caught a number of viral infections in 2012 and hasn't been healthy since long in person interviews are too strenuous. so we do the in depth interviews later over the internet. could you briefly describe your symptoms? what are the disease? the symptoms? him lot more and more symptoms emerged over the years. launch fighter, i kept getting salah, very gland infections. and dear infections, i'm out in 2015. i was in the hospital 3 times with really serious bell problems and, and run kindest of burning in the lungs. wouldn't go away. and i went from one doctor to the next. no, i saw neurologist in 2016 or 2017 therefore that he just took one look at my medical file, saw how thick it was and said, i don't even need to see it. i can tell it's like a some lat, angel watches are. most doctors are unaware of the disease,

even though it was included in the international classification of neurological diseases by the world health organization. in 1969, even today, those affected a wrongly diagnosed a suffering from depression or mental illness. this fellow venomous. as sin, i went to see my doctor describe my symptoms and told him how i was feeling. but he didn't know what it was either. and eventually said my stomach was the problem. sure. i've been to various alternative medical practitioners, but they couldn't help me either. we've tried a lot, but no one could tell us what's wrong. that was fabulous. since no doctors could help, eileen searched on the internet herself and came across a research project. at the technical university of munich and the helm hold center

. who to barons conducted a broad study at the center on mano nuclear doses. she met young people who did not fully recover after the infection and went on to develop emmy cfs. very few scientists around the world are researching emmy cfs in children and adolescence. in germany, she's the fast then best contact alysia to us, lisa, a trigger we can characterize best is indeed infection unit or infections with various pathogens. and goodbye vacant. these are mainly viral pathogens. for example, the epstein barr virus, all the sauce virus. cy, but also enter a viruses and she bacteria and gets bacteria as well in isolated cases in ironing, finn and i'm accidents and surgery have also been described as a trigger on. however, these cases are not as well understood as cases triggered by infections and healthy

people had gotten fellows best take its own title out, then they appear as excessive immune reactions to one such manifest in more than 90 percent of humans. catch the ab stein, ball virus, or e, b, v, during their lifetime, usually in early childhood. the virus often develops without symptoms, and most have no additional consequences. but an infection can reappear as mono nucleus is, especially in adolescence and young adults. common symptoms are a high temperature fatigue, sore throat and swollen lymph nodes most fully recover. some however such a life threatening complications including respiratory disease, spleen damage, low blood cell counts or long term conditions like emmy c fs. an

estimated 40000 children and adolescents in germany suffer from emmys, c. f. s. a diagnosis is complicated. the disease has no biological characteristics that can be used to objectively diagnose an infection. other conditions have to 1st be eliminated as the cause of eileen's permanent exhaustion and pain. the internationally established canadian consensus criteria for emmy c fs helps doctors reach a diagnosis, neurological and cognitive symptoms, immune disorders, muscle and joint pain, headaches, and sleeping dysfunction. the best symptom for distinguishing emmy c. f. s. from other cfs conditions is post exertion. all malays or p e. m. the symptoms worse and after patients exert themselves physically or mentally

leading to a crash blue than 9 months after getting mano nucleus is. eileen was finally diagnosed with emmy cfs by professor water barons in munich. but what then? no medicines or therapists have been developed to battled the disease standard treatments, tackle the symptoms instead of name their guns and who am i and besides the entire symptom oriented treatment, including cardiovascular support. it is, it's important to give patients good advice to recommend relaxation techniques and how to manage their very low energy reserves. thought they shouldn't over exert themselves, but also get limited exercised da, how short daily walks if possible. so they don't lose what's left of their fitness

. ms. d. i le let the quantity of alien ah, eileen is now taking part in one of utter baton studies. the professor and her team are looking at the course of the disease in emmys. cfs patience. eileen's pulse on blood pressure are taken regularly and her blonde is tested. cardiovascular changes are measured during a standing test by okay, straight legs and lean your head back with you. are you nauseous? i feel dizzy with you, but would you rather lie down? yeah. well hold this quote up will be in by dessert conklin, is desmond inputting and the worst thing about this illness is the patients don't actually look ill lot home don't. which is also a problem for research, because stigmatization gets in the way of both treatment and scientific attention

vendome, as we at aunt methodology and yet st. english. and. but at the moment we are thankful for support from the us national institute of health out in the n i. h of d thur directly with kitten and vailable. thank god. now a little more research is being advanced by the wave from that off. it's of a nick on, but it's too little with too little public funding and thought a home. or if a food in germany, most of the patients are laughter, battled the disease on their own. they're dependent on private care from relatives and friends. health insurance companies don't yet recognize emmys cfs and refused to take over. most of the costs. patients are reduced to trial and dera in hopes of getting their lives back up. i lose all school yet. i tried everything yet really everything college also i was so desperate shotgun,

i then happened to try and off label drug and i was on medication that's meant for different illness. and i experienced what i now know as a crash. what of ice crush on the so i researched the medication and kept coming across an illness. i never heard of dog on a concrete go. stalsen b. my algae concert, follow my allied us. follow me really. and i thought yet that's it. to know my negotiation. santos collision that she read it and said you look these people feel like i do on and she sent it to me and then also i remember that well visor is not an that text. the article was very scary. if i can't aunt i saw passage and i kept wanting to leave as i read it, also be and i had to get out of my office and be was sorry what i didn't think this would happen is

because we take a break if you want. i yes, a short break. i know that spike light up on the one hand, i was relieved when i read it and totally recognized myself. although, but on the other, i realised that i had been fighting it for 6 years and would be fighting it for a long time before i could get better. again, this is denise, and it's not even clear whether i ever will get better again, tries of this wonderful battle or it's it's, it's still, it's one more in your process that began 9 years ago with pneumonia. oh, i didn't. the weeks and years sort of followed towson,

i haven't been able to get myself back to where i was, would says, on beach does puerto was to diminish. i start like a 90 year old with a walker, who can only go so far, and no further damage. no hassle. it went from doctor to a doctor for 2 and a half years. no one was able to find anything. then his cardiologist pointed him to common shaban bergen's outpatient clinic at the chart. a hospital she diagnosed him with emmy c. f. as in 2016 and the elliptical glitter the hello. hello, good morning. come with me please. for the consistency, take a seat and we haven't seen each other for

a while. how are you permanent getting worse all the time but slowly mr. okay. okay, still working? no, i'm on sick leave. okay. on. okay. and before then for her, come before that i gradually moved from being in the field to desk work. and then working from home would eventually, even that didn't work anymore harder. even with breaks. 8 hour days of too much the only and you've brought me these results. yes. yes. all to him you neurotransmitters and smith are no ninty, but you are really very high. when i saw you 1st, they were elevated away, but the values you have now are extremely high via in depth analysis. we think these antibodies also regulate the body and do to see if, if their function is disrupted, are from june. it like starts. and this may mean that exertion can lead your muscles not being properly supplied with blood. your quickly and pain can't

concentrate civil and ultimately energy production is also controlled by this system. that is a systemic, that it could be a major factor for explaining all the complaints of this illness and whom spring damage harden line is still only have an incomplete creature of how this disease functions. but from what is relatively clear is that it's an illness where the immune system plays a significant role, and it is only because the disease usually begins after an infection. mention 9, i infect soon begin the infection ramps up the immune system and it doesn't return to its original state via indifferent asked if we assume that this overactive or mr . late to deny in response then takes over the function of the autonomic nervous system. within the autonomic nervous system controls all the bodies, involuntary functions, our heart beat, breathing, digestion, and centrally, the dilation of blood vessels. if during exertion,

blood cannot flow freely through the vessel's muscle pain and pour concentration are the result. not enough oxygen is available to produce energy. the better to receptor is vital for blood flow regulation and is located on the blood vessels in muscles. it's controlled by adrenalin, which is released during physical exertion as well as antibodies in healthy people . blood vessels dilate to increase oxygen supply to muscles. 2 but the charity team found indications that antibodies don't function correctly in m e c, f s. patience muscles don't get enough oxygen. half lipp curs antibodies are being examined. the reason that that didn't had anti cutting, because we know the patient has antibodies against the b to, to receptor. but we want to know is which part of the b to, to receptor in? we've divided up the b to 2 receptor into 15 small pieces and stuck each piece onto

a different little bait which can be light. nice be so glow in a slightly different color epicenter and then we can see i'm tired. this patient reacts more to the front part. if i got another to the middle part or we can pay this with the reaction pattern of healthy people, this would help us understand the disrupted receptor mechanism better. and ideally, we would see such a clear, different sign that we could use it as a diagnostic test. and you have not pushing tests, not the blood taken from my lean is to be used for further research. the munich researches send it with other samples to the julius maxine millions university in broad bog microbiologist, and they're ologist, dr. boop, hash prostate and his team are awaiting the samples. i personally am very fascinated to search for the infectious causes behind the disease. if at all, there is a vital infection being associated in this disease. and if we can find out this

virus association, can be rufe at the molecular level, how the virus causes the disease. this will be really a big, big breakthrough in this field. and if we can prove that really, viruses are responsible for the disease, then in a long done definitely we can find a cure to it or a way to interfere in the process of development. the scientist has been studying the role of viruses in the human body for many years. he was the 1st to discover the link between the epstein barr virus and m e. c f. s. what we have found out that hope is viruses, particularly human hope, is 5 step 6 and epstein, barbados, they are the most interesting candidate which can contribute to the development of the disease. we have found as the 80 to be 6

produces a small army. and the small army can directly target and mitochondria to fragment. and this is already known that in e v infection also mitochondria is fragmented, so we believe that these virus induced mitochondria recommendation is one of the most important steps in the development of every surface. our physical and mental performance is determined by tiny little power generators. the mitochondria . healthy mitochondria have a long mash like structure which is important for producing 80 p. r bodies universal energy sauce. when mitochondria fragment and lose their mash like structure, they can no longer function properly and produce energy. ah, in his experiments, he adds antibodies from the blood of emmy c. a fast patience to healthy cell

conscious, he has grown water will then happen to the healthy mitochondria. if there is a factor in the system of m as if a spaces which correspond to dysfunction, we expect that this factor will affect the healthy cells and the mitochondria will be fragmented. of 2 different degree. the 1st results appear after between 24 and 48 hours. he's right. the mitochondria from the healthy cell culture have fragmented and broken down into tiny pieces. this is severely affected by the condo. can see that they are on pieces now. they're not interconnected to each other. if you look into a healthy cell, you can see that the medical of it's like interconnected with each other now. and this matter is, 1st of all,

week in the immune response. they cannot fight against any infections. and they produce less energy, their metabolism is completely flown. this is how, what happens in some of the senior spaces who pash, prostate research is groundbreaking. and a possible explanation of y m e c f, as patients have low energy levels. but this process could also be used in diagnosis, which would be an enormous advance be at the very beginning stage of testing. you're still not using as a diagnostic, but we are trying to develop this technique. so at this stage, it's very preliminary we, we can get nice results with cbm is here for spaces. almost 100 percent of his books are with mild, moderate, and missy of his patients. it still goes sometimes wrong, so you still have to work on it. but he needs funding to his work and

there are not any public funds available for emmy cfs research in germany. donations are all he has dual cells. emmy cfs research is insufficiently funded. around the world in the united states for example. it ranks very low. u. s. health authorities spend about $14000000.00 on the $2500000.00 emmy cfs sufferers. however, for $1000000.00 multiple sclerosis patients, the same authorities spend $100000000.00. and for the 1200000 people with h, i v 3000000000 the international hash tag emmy action movement is fighting the more research funding recognition of the illness and adequate treatment. they want to draw

attention to the precarious situation of those afflicted. in her documentary on rest, jennifer bria shows hundreds of empty pads of men's and women's shoes. their symbolic for the millions of people who have disappeared from public life. others from came galena published most of what the done as soon as i saw the film, i thought i have to do something like that. i have to do something. what so we have to attack this that the route $100.00 or with a handful or perhaps 10 people we launched millions missing germany named and then planned and carried out our 1st event, landlord. ahem! good. you for long treatment in germany for emmy cfs patients is catastrophic, and they have no access to treatment on after fi, legal battles for every small step like getting a wheelchair and sometimes even subjected to considerable, stigmatization discrimination will just come in the office us.

ah, ah, with national home called budget patricia, it was a very exciting time that it really felt like you could make a difference, could change something and didn't have to resign yourself to your failing chicago. more in norway, there are at least 15000 people with m e c f. s. a norwegian research team led by aston krueger and olaf miller from bergen university. as long been searching for a drunk that could help them. they came across, retook c mob. a few years ago by chance,

they had wanted to use it to treat it cancer patients who was also suffering from emmy cfs. after observing at least a patients telling us independently of each other about this effect only. and missy efferson, this is her, then we decided to try to do some research. and our hypothesis from the start has been that them is here for us. could perhaps be a very am dylan or to him indices and with a role for what the antibodies under b lymphocytes. and that's why we decided to pursue the nab surveillance. be sounds are important immune cells in our body that produce antibodies that destroy viruses and bacteria. unfortunately, this process sometimes goes awry and the p cells produce antibodies that don't work

properly. actually attack the body itself. this occurs in many auto immune diseases like lupus or maya fina gravis. scientists believe that emmy c. f. s. is one such auto immune disease. retook the map is a medication which temporarily destroys be cells preventing them from producing antibodies to attack a person's own body. in 3 smaller scale trials, they succeed in treating emmy c. f. s. patients with retook c. ma'am. scientists then initiated double blind randomised phase 3 trials with 152 patients patients and their families around the world. a hoping it will be the medication that can save them. ah!

while the da simpson, i think the worst staying is the loss of control. i'm so ma'am, and the more you struggle and fidelity more, the more your health deteriorates. like being in quicksand. the antibodies in the blood of emmy cfs patients seemed to play a significant role who tibetans and her team also want to discover whether they can diagnose the disease based on these antibodies. and whether a marker can be found in the blood, though, could simplify the diagnosis. yes, i'm ready for august did we asked whether the cfs patient had been infected with the epstein bob iris at some point as into theater. and if so, they should have a few green dawns to her and they do that. this is

a green dog that we also see in some standard diagnostic test. and not you have gnostic testing and with the unique signature which we see he is related to c fs. if we can only say once we've examined a lot of patients after our vendor gone through the content on t, as in tom during our research reports of the new saws, covey to virus began to appear exponentially. world wide, over 100000000 people have been infected with a new virus, weeks and months after an initial infection. many a still suffering with very similar symptoms to emy cfs. felix mon felt a neuro psychologist and musician contracted corona in march 2020. he still hasn't recovered, suffers from permanent pain cognitive lapses, sleep disorders and extreme exhaustion. they bought

a nozzle switched excellent daughter the weekend when it began going downhill. i just thought i had severe fatigue in the fatigue. did i know the turn? and i know that its post viral and as far as the cost of your fathers, i just googled post viral fatigued without knowing that it's used as a synonym for m e. c fs. as $400.00 foot, i saw that it was precisely these seemingly unrelated symptoms that i had. probably, i couldn't have imagined an illness that so blake close to smells or olive muzzles there. it says though, you just don't exist anymore. yeah, near as of alpha z axis till after the 1st wave of the corona virus, it gradually starts to become clear what an infection with the virus really means. professor carmen shy, been bogan, is war it via didn't notice it line despite what's in there. i think that around

one or 2 percent of those you've had a mild case of cove at 19 could develop cfs and vehicle adelante of ethic. when we see how dynamic the spread of this virus actually is it, there is great concern that we will have a significantly increasing number of chronically ill m e. c f. s. patients in germany because of covered 19, and i turned in farther from cover come and international researchers, including boop, ash prestige are rushing to investigate the long term effects of coven 19. he doesn't think the sales covey too, is directly responsible for the long term effects. he believes that latent herpes viruses in the human body are reactivated after a corona infection and weeks later lead to long cove. it prostheses a comparable pattern with m e c, f, as which also develops after a viral infection. if the signature of the ceiling that we are looking at their

mercy of his presence are the same in these places. at this moment we are talking that symptoms of hemisphere for spaces are similar to these patients who have this long covert. but we don't know it, it just simply an association. these no proven or data to say that okay. a long covert basin is now an m is here for spacing, a centralized love. i love camella, i left school and decided to do remote learning to finish schooling. i can do it from home. gosh, my school just wasn't giving me enough support. as many i would have had to continue to go to school normally, which just isn't possible. okay, but since i've been doing everything from home, i definitely feel much better. yes. now if you in federal he most, most families leave he with a new stock of hope. after talking with us and have known the event in griffin to

patton, we wish we could make patience much earlier i had we wished the illnesses clinical picture was more widely known. and that any patients who haven't recovered 3 months after an infection and showed a symptoms for me would be referred to a specialist and begin treatment, which it's a list. and also tarzan and and his into my into to behind on to begin. and we would then see fewer patients in such a poor condition touched on clifton after millions of patients around the world a hoping for salvation from norway. the results of the 2 year retook. same app trial are eagerly awaited but then disappointment. the trial is negative. retook the map doesn't have the expected effect level when it was her a bit unexpected. it could have had a negative trial. that is all saw that, that, that can happen even if you have a, an active drug. but her not seeing a tendency in the right direction was

a bigger surprise for us, especially as her stand said based on our previous experience. on the other hand, we didn't, it changes in the reduction of a double bond is study. for example, lower doses in maintenance, treatment which may have had an influence on this. scientists had to have the dose because they received no funding from the pharmaceutical industry. but the research continues the hunt for other drugs that could help patients. they can use their research bio bank with 3000 bumped samples or donated by participants in the re toxeme out trial with if you ask me what we're looking for in the future. one thing we're looking for is a biomarker, because a lot of patients do not have the emmy's c, s, f, diet diagnosis because the practitioner general practitioner,

all the specialist has problems and putting the diagnosis of the patient. but for research into both the causes of the disease and possible drugs, scientists everywhere need money. at least 40000000 euros in germany alone. the federal government recently set aside 3700000 euros for research into patient care. a drop in the ocean. in my personal opinion that the only way we can find a solution to this disease is to bring basins, be clinicians and the basic sciences, such as to one umbrella. and our political system can play a very important role in bringing together these 3 pillars. if this happens, i guess in the next 5 to 6 years, we can have a solution to this problem. is

we've also had phases with suicidal forms. it's 1st of course i have a weight of what you want to live like this with no prospect of getting any better job spring portion, even if the massive research was launched. now, it wouldn't help me as well. but until then i'll try anything of your. i'm not going to let you strike me down. if the disease once a fight in country, i'll give it one comes of m. b s p. so when a d bench nicholson, there are so few people out there who are able to fight for us camp boy, or who want to fight for us after you talk of to children. that puts a lot of pressure on our shoulders. looks it's issue excellent, dental. oak. you put yourself under pressure there. you all's mercy. because you really want to get out of here again, play and not be this. either. we all know exactly what we want to do tomorrow. if

we get well, again, good. ah, [000:00:00;00] a ah, on your mother grammy. he. he was that bad right? in school in australia changed quite a bit during the damage. what is it like when to sports? in

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