to remakes, are you really, really motivated because they feel that they are doing something very important for this war. but as the war continues, so to do the attacks, hopes of prosecutions seem a long way off. your want to get our names live from roland will catch you kind of ah, stories that most people of the world over information. they provide opinions. they want to express d. w on facebook and twitter up to date, and in touch. follow us. ah,

ah, that's pretty much the courtesy. it's like the plugs been pulled. doing the switch has just been turned off. so before this, done this, 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 that music disappears or you're disoriented in your fall and you can't do anything about it. skip this close to begging, torn comes she missed what? contributions at austin. i felt deathly ill for 8 years to certain. i know my body has changed and this condition is now irreversible. he did not. in the

evening, i often sat in despair telling my boyfriend that i can't understand why nobody can find anything of new. let us finish and freshen. jen cummings in his mother's records is rose by when it's bart, my 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. really cut. don't have the strength to use my lungs as to mom. so does is mishma. that's conflict can't even complete a sentence without taking a breath bill just unfold financial not

really financial and own 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 ish mad. it makes me afraid that it will become a permanent condition. ah, just look, i'm sure in swift just to follow. and yet aileen 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. f society. they were or 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 shallow tie hospital in berlin. common shoppin bogan has been researching emmy cfs for years to come master oncology dalton for him yards. fancy fancy his vocalist 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 november. 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, i will die is very small in relation to the disease as frequency and kind of a lot to enter the hutch criteria. kunkle. 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. it's close to the to plus the habits and partial mostly i'm disappointed and i just, i've never imagined that i could be left. so alone with this illness, i did twice a day seminar. there's not only a lack of interest, but a lack of understanding the mundane mom's like when you speak to politicians, they think you're just an isolated case on that you're not awesome. and the worst thing is that you gradually disappear in 2018 or my neighbors thought i had moved away on good homes. welcome. mm hm. we had a 16 syndic. so tuba surveys 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 good. so fearfully, emmy c. fs stands for my allergic and safe. hello my alight us, chronic fatigue syndrome. a complicated name for a complicated illness. deborah peterson, alicia to the term mild 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, enough my isn't. let's endless. m gobbled flight olden phones to normal. it was an attempt to give it a more appropriate name in 2015 and a disaster. make exertion in tolerance, disease blessings,

intolerance. a canker is naturally offsets cumbersome, but had better describes the cool 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 on to the last one, which natal love yet is there are a completely inexplicable physical reactions. 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 roughly our teeth 0. 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, went on the mattress, disappears. those 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 that she was on summer live. she always used to go out with her friends and always had seen that she just exercised all the time. she used to work out here at home to work out because she can't dance anymore. i got a really bad, a functioning for this month was i don't herschel, as a parent, you're helpless if you don't know what's causing it, was that and what you can do to help and, or 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 to know i can't, i don't want to denote, he can be a bit much and before over the sun. and then if i had to describe what the illness

feels like, i compare it to a battery and the superman, 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 diseases symptoms? him lost a more and more a symptoms emerged over the years. on schweitzer, i kept getting salah, very gland infections, and dear infections, i might, in 2015, i was in the hospital 3 times with really serious bell problems. and, and run kite s. a 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 files. saw how thick it was and said, i don't even need to see it. i can tell it's like a some medical monster. 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. the slow venomous 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 block choices. 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 abroad 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 1st then best concoct to his ear to us loser. it trigger we can characterize best is indeed infection or infections with various pathogens and goodbye vacant. these are mainly viral pathogens, for example, the epstein barr virus, all the sauce virus, sy, but also enter a viruses and for bacteria and gets bacteria as well in isolation 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 his own title out,

then they appear as excessive and noun reactions to one such manifest in more than 90 percent of humans catch the ab stein, bol 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, 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 emmys, 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. but 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 by okay, straight legs and lean your head back with you. are you nauseous? i feel dizzy. lindley smith, he but would you rather lie down? does cause a problem by deter conklin is desmond in put in the worst thing about this illness is that patients don't actually look ill lot home to home, which is also a problem for research because you stigmatization gets in the way of both treatment and scientific attention or 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 and the n i h of d thur to idol with good written and velo. 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 a home or as of 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 emmy c fs and refused to take over. most of the costs. patients are reduced to trial and dera in hopes of getting their lives back. have a i lose all school yet. i tried everything yet really everything college also i was so desperate shopped on. i then happened to try and off label drug does. i'm

with 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 never heard of dogs on a concrete brochures and my allergic and stuff. hello. my allied us, follow me really. and i thought yet that's it. still all my negotiated, that is colleen left, 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, 5 is not an that text. the article was very scary. if i can't, aunt i saw passes and i kept wanting to leave as i read it, also be and i had to get out of my office and somebody was sorry for the call. i didn't think this would happen if

we take a break. if you want i yes, a short break. i know that's like a life of i was on the one hand, i was relieved when i read it and totally recognized myself all. 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, because if it doesn't, and it's not even clear whether i ever will get better again, guys of this one is on the bottom or it's it's, it's a, it's one more in your process that began 9 years ago with pneumonia. oh, and in the weeks and years sort of follow towson, i haven't been able to get myself back to where i was towards was on beach does

forever. was due to mish. i start like a 90 year old with a walker, who can only go so far and no further damage. now, 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 carmen, 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. so the consistency take a seat and we haven't seen each other for a while. how are you helen or 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 to the for that i gradually moved from being in the field to desk work. and then working from home is 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, alive at the values you have now, are extremely high via it's isn't that analysis. we think these antibodies also regulate the body and you to see a face they function is disrupted from john acosta. and this may mean that exertion can lead your muscles not being properly supplied with blood in your quickly and pain can't concentrate simple 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 his illness. uncle misprint, damage harden wine is still any, have an incomplete picture of how this disease functions that from what is relatively clear, is that it's an illness with the immune system plays a significant role. and it is only because the disease usually begins after an infection. mention not, i not infect chill and begin the infection, ramps up the immune system, and it doesn't return to its original state via indifferent hours death. we assume that this overactive or mr. late to delayed 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 vessels,

muscle pain and pour concentration are the result. not enough oxygen is available to produce energy. the be to to receptor is vital for blood flow regulation and his located on the blood vessels in muscles. it's controlled by adrenalin, which is released during physical exertion, as well as anti bodies. 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 emmys. cfs patients muscles don't get enough oxygen. half lipp cuz antibodies are being examined, it isn't that that didn't had anti covering, but i thought 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 get another to the middle part off more, 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 difference. i'm that we could use it as a diagnostic test. you have not pushing tests, not the blood taken from my lien is to be used for further research. the munich researches send it with other samples to the julius maxine millions, university in birth, bog microbiologist, and their ologist doctor, 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 eat or a way to interfere in the process of disease 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. as what we have found out, that hope is viruses, 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 and 80 to be 6 producers, a small army, and the small army can directly target mitochondria to fragment,

and this is already known that in e 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 emmy c. a fast patients to healthy cell conscious, he has grown. what will then happen to the healthy mitochondria

if there is a factor in the system of m, is if a space in which quadratic under 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 con, the 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 like interconnected with each other now. and this might, aquanda is, 1st of all, week in the immune response. they cannot fight in 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 severe let me see if a 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 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 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. 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. i 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 named and then planned and carried out. our 1st event landlord, dogwood, d for dog treatment in germany for emmy cfs patients is catastrophic. and they have no access to treatment, one after 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, which 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 facing chicago mos 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 patient 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 he of us can perhaps be a very and dylan what them indices and with a role for what the antibodies under the lymphocytes and, and that's why we decided to pursue the nab surveillance 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 p cells produce antibodies that don't work properly or actually attack the body itself. this occurs in many auto immune

diseases like lupus or my athena 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 m e c. f. as 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,

it's more of a dull shim still. i think the worst thing 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 ah, the anti bodies in the blood of emmy c. f. s. patients seemed 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. young lady fibiger stared. we asked whether the see a face 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 dot that we also see in some stand a diagnostic test done that you have 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 phillips, monfort, 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 and nozzles wished, excellent daughter the weekend when it began going down hill. i just thought i had

severe fatigue. with 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 pulled. i couldn't have imagined an illness. that's so blake close to smells or olive muzzles there. it says though, you just don't exist anymore. yeah. mishma as of offers x 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 shaban bogan is war it via dean not does it la, i'm just fight what's in there. i think that around one or 2 percent of those who've had a mild case of cove at 19 could develop cfs and really quality of authentic 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 cove at 19 in got london farther from cover come in. international researchers including blue pash, prestige are rushing to investigate the long term effects of cove at 19. he doesn't think the science 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 rusty sees a comparable pattern with m e c, f, as which also develops after a viral infection. if the signature of the ceiling that we're looking at, the embassy of his presence are the same in these patients. at this moment,

we are talking that symptoms of hemisphere for spaces are similar to these patients who harped is long covert, 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, can i live? 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. and if you will please. but since i've been doing everything from home, i definitely feel much better. yes, now fumed federal he mice, most families leave he with a new stock of hope. after talking with us on huffman, the vincent vivian patton, we wish we could meet 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 infection and show the symptoms for me would be referred to a specialist and begin treatment, which it's a list and also tartan and, and his into my enter to bonham. to begin. and we would then see few patients in such a poor condition pushed on pref enough to go millions of patients around the world, a hoping for salvation from norway. the results of the 2 year re took him out trial, or eagerly await it. but then disappointment, the trial is negative. retook see map doesn't have the expected effect level 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 a, an active drug. but 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 reduction of double bond in 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 plants 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 emmys diagnosis because the practitioner general practitioner, all the 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 bes, 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 my 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 in country, i'll 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, i was making because you really want to get out of here again. it is. we all know exactly what we want to do tomorrow. if we get well,

again for me, in, on a, to the point of strong opinion, clear positions, international perspective with russia pull back north of kia has brought relief. but her as indications of a civilian back the car come to light, will be apparent, war crime condensed germany to embargo. russian fossil fuels find out on to the to the point 30 on

d. w with making the hill behind them dw news africa. they show that the issues in the continent life is slowly getting back to normally where on the street to give you enough reports on the inside of our cars, on the ground reporting from across the continent and all the trend stuff. the mazda u t. w is africa every friday, only w ah ah

ah, ah ah, this is dw news live from berlin, russia admit to significant losses of troops, and it's war on ukraine, an interview with sky news kremlin spokesperson dmitri pash cough calls the soldiers. dad's a huge tragedy. it's a rare admission from moscow of the conflicts toll on the russian military. also coming up and urgent leave from ukraine's a foreign minister. either you help us now and i'm speaking about days not weeks or you help.