watching dw news coming up next, a documentary mysterious illness examines a serious you are logical condition. of course, remember you can always get the latest news on our website, delta u dot com, and i'll be back with the latest news at the top of the hour in the meantime for me of the tea. and thanks for with imagine how many portion of lunch us heard out in the world climate or it could be very common stores. this is my place, the way from just one week. how much work can really do we still have time to work. i'm doing all with what furth. ah,

ah, as, as that's pretty much the courtesy, it's like the plugs been pulled, moving the switch has just been turned off. so therefore, the stomach, imagine being at the amusement park and suddenly there's just noise again, or all the lights go out to clean on the carousel stops, the music disappears, or your disoriented in your fall and you can't do anything about it. please close to pegging tone. comes soon, the sweetest conclusions at austin. i felt deathly ill for 8 years. the shadow, 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 any language. let us finish. interesting chem, communist mothers, americans is rice. why? when it's bad, 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. it's mom. so desert mishma in that complex can't even complete a sentence without taking a breath bill. just unfold francis natalie:

financial info stickly. and 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 is schmidt, and it makes me afraid that it will become a permanent condition. ah does look, i'm sure it swift doesn't alex wish don't yet. 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, ty, hospital in berlin, common shape and 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 another. but with this disease, we know about it as much as we did others 30 or 40 years ago for christiane bomb. the overall number of scientists working on this disease will hide, is very small in relation to the disease as frequency and kind of a lot to enter the hutch cutter conquer. 17 to 24000000 people suffer from emmys cfs around the world. in germany, an estimated 300000 in france around 250000 women are more

frequently affected than men. scientists assume that at most, only half of those affected have been diagnosed. miss brewster that she was the shabbots impartial. mostly i'm disappointed and just i'd never imagined that i could be left so alone with this illness. and there's not only a lack of interest, but a lack of understanding mudding mom like when you speak to politicians, they think you're just an isolated case on does that you're not awesome. and the worst thing is that you gradually disappear in 2018. 0 my neighbors thought i had moved away on good welcome. mm. the 16th and so tuba surveys the 26th of october and i've 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 in good. so fear for me. emmy cfs stands for my allergic and stuff. hello my a light us chronic fatigue syndrome. a complicated name for a complicated illness. deborah cousin, alicia tis a 10 mile. jake refers to muscle and unsafe a my litres of is an inflammation of the brain and spinal cord marks. as is all kinds of guns, a group, the term is unfortunate because in most patients there is no evidence of inflammation in the classical sense. not my isn't. let's english m god was flight olden phones to normal. it was an attempt to give it a more appropriate name in 2015 on a disaster mic exertion, intolerance, disease, blessings, intolerance. a canker is natalia, also it's cumbersome,

but it better describes the call problem. and this problem um, best than, than does this, the, those who suffer from this illness have very low energy reserves and can no longer tolerate exertion and bless from natal love yet. esther are a completely inexplicable physical reaction. your bones hurt so much that you can get up in the morning. like the flu. 3 feel weak. you're feverish to feel muscles like just your 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. what border my private life was also very actors weren't on the mattress, disappears, does, would uncompleted canon eileen

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 mystified by what's happened to their daughter so she was on summer lynn. he always used to go out with her friends boys and seen that she just exercised all the time. she used to work out here at home to work out god, she can't dance anymore of a gun. it's really bad of a functioning as one's was it had 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, what have you tried to be encouraging and say come on, let's go outside ski. let's take the dog out and come with us again. love or no, i can't. i don't want to do that, it 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 it 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, but our batteries don't really recharge at all. any health issues, we always have to work with only a few per cent 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 lost a more and more a symptoms emerged over the years. staunch fighters, i kept getting salivary gland infections and deer infections. i might in 2015, i was in the hospital 3 times with really serious bell problems and, 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 semantic launches 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 to day, 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. so i bent his 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 again. 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 says 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 and best concoct alysia to us loser 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 saws virus cy, but also inter a viruses and few bacteria and it's a bacteria as well and isolated cases in ironing. finn and i'm accidents and surgery have also been described as a trigger. however, these cases are not as well understood as cases triggered by infections and healthy people he couldn't find out was best pick his own title,

then they appear as excessive and noun reactions at 216, manifest in more than 90 percent of humans catch the ab stein bomb 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 mano, 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, f. s. 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 cfs 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 exertions malays, or p e. m. the symptoms worse and after patients exert themselves physically or mentally leading to a crash glue. then

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 been named 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, as or 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 balance 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. oh, okay, straight legs and lean your head back with you. are you nauseous? i feel dizzy with you, but would you rather lie down? what does cause a problem that is her conklin, is desmond inputting the worst thing about this illness is that patients don't actually look ill at home to home, which is also a problem for research because the stigmatization gets in the way of both treatment and scientific attention or vendome, as me at aunt em methodology yet st. anguish and but at the moment we are thankful

for support from the us national institute of health without him the n i h of teeth are directly with kitten and vailable. thank god. now a little more research is being advanced by the wave from that on off. it's of a nick on, but it's too little with too little public funding and thought our home or food in germany. most of the patients are laughter battled the disease on their own. their dependent on private care from relatives and friends. health insurance companies don't yet recognize emmy c. f. s, i think and refused to take over. most of the costs. patients are reduced to trial and error in hopes of getting their lives back. have a i lose all school yet. i tried everything yet, really, everything i was also, i was so desperate shopped on. i then happened to try and off label drug does,

i mean medication that is 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'd never heard of dog. i know i'd go store sunday, my algae concert, follow my allied us, follow me really. and i thought yes, that's it. scanned all my initiative. letters collusion 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 visors no m that text the article was very scary. fragment gone, i saw passes and i kept wanting to leave as i read it. be and i had to get out of my office and be was sorry, i didn't think this would happen is we'll take

a break if you want. i. yes, a short break. i know that's like the light of i was on the one hand, i was relieved when i read it and totally recognized myself all but on the other, i realized that i'd been fighting it for 6 years roy and would be fighting it for a long time. before i could get better again, visit with it, and it's not even clear whether i ever will get better again guys of this one is on the bottom. m. it's, it's, it's still, it's wondering your process that began 9 years ago with pneumonia. oh. and then the weeks and years of followed towson, which i haven't been able to get myself back to where i was once was on beach as

well. was due to mish i stuff like a 90 year old with a walker. who can only go so far, and no further damage. no letter went from doctor to doctor for 2 and a half years. no one was able to find anything. then his cardiologist pointed him to common shy, been bargains, outpatient clinic at the charity hospital. she diagnosed him with m e c f, as in 2016. and i live with hello, hello, good morning. come with me please. this is the take a seat film, and we haven't seen each other for a while. how are you permanent getting worse all the time?

but slowly, mr. ok. okay, still working? no, i'm on sick leave. okay, on. okay. and before then for her credit for that, i gradually moved from being in the field to desk work. and then working from home was when called, eventually even that didn't work anymore harder even with breaks. 8 hour days are too much the only and you've brought me these results. yes. all to him you neurotransmitters and smith are no ninty back. they are really very high. when i saw you 1st, there were elevated at the values you have now are extremely high via it's isn't that analysis. we think this antibodies also regulate the body and you to see a face. the function is disrupted from june. it starts and this may mean that exertion can lead your muscles not being properly supplied with blood in your quickly and pain can't concentrate cycle. and ultimately,

energy production is also controlled by this system that is a sustainable that it could be a major factor for explaining all the complaints of this illness angle. misprint. damage, harden line is still only have an incomplete creature of how this disease functions . that's from what is relatively clear, is that it's an illness with the immune system plays a significant role is only because the disease usually begins after an infection. mention not i'm not infected. so begin the infection, ramps up the immune system and it doesn't return to its original state via indifferent as death. we assume that this overactive or mr. late to deny in response, then takes over the function of the autonomic nervous system of things. the autonomic nervous system controls all the bodies, involuntary functions, a 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 b to 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. but the charity team found indications that antibodies don't function correctly in m e c fs. patience muscles don't get enough oxygen. half lipp cuz antibodies are being examined. they listen, they're packed and had anti coughing because we know the patient has antibodies against the b to, to receptor. what 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. we can do like ice be so glow in

a slightly different color there patently 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 4th, 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. 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 board, 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 roof 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 diseased allotment. 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 by this is particularly human hope is 5 step 6 and epstein, barbados. they are the most interesting candidates 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 mitochondria to fragment. and

this is already known that in v infection also, mitochondria fragmented, so we believe that these virus induced mitochondria fragmentation is one of the most important steps in the development of m. cfs 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 emmys. cfs 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 causes medical 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. mitochondria 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 that 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 why emmy cfs 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 see if his patients it's 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 c. f, as research in germany. donations are all he has low self, 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 unrest, 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. i just came galena published most of what the done as soon as i saw the film, i thought i have to do something like that. we have to do something. what so we have to attack this, that the route 100, all with a handful or perhaps 10 people. we launched millions, missing germany league, and then planned and carried out. our 1st events landed on you for long treatments in germany. for hemi cfs patience is catastrophic. and they have no access to treatment, one have to fi, legal battles for every small step like getting a wheelchair and sometimes even subjected to consider all stigmatization and discriminate. shipment is coming off with us. ah, ah,

with national home called bonham. patricia. it was a very exciting time. it really felt like you could make a difference, could change something and didn't have to resign yourself to your for having chicago mom. in norway, there are at least 15000 people with m e. c f. s. a norwegian research team led by aston praga and olaf miller from bergen university, has 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 8

patients telling us independently of each other about this effect on me and missy of has him. this is her than 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, autumn indices, and with a role for what the antibodies under be lymphocytes. and that's why we decided to pursue the nab solutions. be sounds are important. immune sounds in our body that produce antibodies that destroy viruses and bacteria. unfortunately, this process sometimes goes awry and the be cells produce antibodies that don't work properly or actually attack the body itself. this occurs in many auto

immune diseases like lupus or maya fia gravis. scientists believe that emmy c fs is one such auto immune disease. retook him ab 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 see man or scientists then initiated double blind randomized phase 3 trial with 152 patients. patients and their families around the world are hoping it will be the medication that can save them. ah,

my little shim store, i think the worst thing is the loss of control arms or ma'am, and the more you struggle and fidelity more, the more your health deteriorates. like being in quite santa ah, the anti bodies in the blood of emmy c. f. as patients seem to play a significant role, who to balance 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, flabbergasted. we asked whether the see if this patient had been infected with the epstein bob iris at some point as into theater than 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 stand a diagnostic test done. not yet gnostic testing and with the unique signature which

we see he is related to cfs. 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 relics, 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 over the weekend when it began going down hill. i just

thought i had severe fatigue from the fatigue. did i know the turn? and i know that its post viral devices because of your father's 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 until now . i couldn't have imagined an illness that so blake closed the smells lower. olive the muzzles there. it's as though you just don't exist any more. yeah, mishma. as of alfred 16 after the 1st wave of the corona virus, it gradually starts to become clear what an infection with the virus really means. professor, common shy, been bogan, is war it via d not does it. i'm the site. what's in there? i think that around one or 2 percent of those who had a mild case of cove at 19 could develop cfs and really quality of us 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 covert 19. and i planned in fargo from cover come in. international researchers including boop, ash pressed a, a 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 the embassy 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 coverage, but we don't know it, it just simply an association. these no proven her own data to say that, okay. a long covert basin is now an embassy for spacing offense, religion love, i love camelia, i left school and decided to do remote learning to finish schooling, so i can do it from home. 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, not hewn fragile it he most most families leave he with a new stock of hope. after talking with us on huffman, the vincent, griffin patton. we wish we could meet patience much earlier i had been we wish the illnesses clinical picture was more widely known. and that any patients who haven't

recovered 3 months after infection and show the symptoms, which would be referred to a specialist and begin treatment. but it's a list and also tartan and anason to remind her to be handled to begin. and we would then see fewer patients in such a poor condition pushed on clever enough to it over millions of patients around the world, a hoping for salvation from norway. the results of the 2 year re took him out. trial are eagerly awaited but then disappointment. the trial is negative, retook the map doesn't have the expected effect. when it was a bit unexpected, it could have had a negative a trial. that is all saw that, that, that can happen. even if you have an active drug but are not seeing a tendency in the right direction, was a bigger surprise for us. especially as i said,

based on our previous experience. on the other hand, we did the changes in the we took some of double bonded study, for example, lower doses in maintenance treatment which may have had an influence on this. the scientists had to have the dose because they received no funding from the pharmaceutical industry. but the research continues to hunt for other drugs that could help patients me. they can use their research bio bank with 3000 blood samples or donated by participants in the re took him out trial with if you are what we're looking for in the future. one thing we're looking for is a bio marker because a lot of patients do not have the m e p. s f. diagnosis because the practitioner general practitioner or a specialist has problems and putting the diagnosis of the patient spot for

research and about the court is that 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, the only way we can find a solution to this disease is to bring patients, the 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 help solution to this problem. it also had phases with suicidal forms. first,

of course i have right here would you want to live like this with no prospect of getting any better. gibson portion, even if the massive research was launched mountain, it wouldn't help me as well. but until then, i'll try anything. i'm not going to let this drag me down. if the disease wants to fight and kind of give it one comes along. we skipped. so we need the bench nicholson. there are so few people out there who are able to fight for us can void, or who want to fight for us after you talk of to, to attend. that puts a lot of pressure on our shoulders. thanks. look at, look, you put yourself under pressure, you know, marty, because you really want to get out of here again. we all know exactly what we want to do tomorrow. if we get well again,

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