british prime minister boris johnson has travelled a key for face to face tops with ukrainian president the let him as a lensky to leaders discuss the you case long term with support for ukraine, including a new package of financial and military city w news up next via doc film taking a look at mysterious illness and stay tuned for that. and while more for you at the top of the out, thanks very much. imagine how many portion of floods us heard out in the world. climate change, very hot stores. this is my pleasure, the way from just one week how much was going to really get we still have time to work. i'm going with ah,

ah, that's pretty much the courtesy. it's like the plugs been pulled. the switch has just been turned off. so what does 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 and you can't do anything about it. close to pegging tune comes she missed what conclusions at austin. i felt deathly ill for 8 years to show that i know my body has changed and this condition is now irreversible and gave them up

. in the evening, i often sat in despair telling my boyfriend that i can't understand why nobody can find anything, as newman has finished. and freshly 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. it's usually like home. 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 to mom. so desert mishma in that complex can't even complete a sentence without taking a breath bill just unfortunately not

totally free attention informed me. 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 mats and it makes me afraid that it will become a permanent condition. ah, just look, i'm for in swift, distant dollars which don't 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 their personal stories. the strong response made 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 van, the overall number of scientists working on this disease, i will hide is very small in relation to the disease as frequency and kind of a lot to enter the hutch criteria. conklin. 17 to 24000000 people suffer from emmys . cfs around the world in germany and 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 cross 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. and theresa dawson, though 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. my neighbors thought i had moved away on google chrome. welcome. mm hm. you had a 1626. so 12 today's 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 good. so fearfully, emmy cfs stands for my allergic and sa, follow my ally tips, chronic fatigue syndrome. a complicated name for a complicated illness. deborah peterson, alicia, to the term 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, 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 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 natalia, 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 blast from which natal of yet esther are completely inexplicable physical reactions. your bones hurt so much that you can't get up in the morning. like the flu. 3 feel weak. you're feverish to feel muscles, like roughly our chief oper, our chief. i 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, 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. was she wasn't murdered, 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 go. she can't dance any more of a gun. it's a really bad hold. ah, but this one's wasn't hers. as a parent you are helpless if you don't know what's causing it was and what you can do to help. and when have you tried to be encouraging and say, come on, let's go outside ski and let's take the dog out. well, come with us in local. no, i can't. i don't want to do that. he can be a bit much and reform for this. i'm interested in this 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. until 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 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 lost a more and more a 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 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. so i 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 blocked years 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. ooh, to barons conducted a broad study of 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 1st den beste concoct to his ear to us closer it 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 bar virus will the sauce virus sigh, but also enter a viruses and for bacteria and get a cheerier 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 fellow as best as his own title. then they appear as excessive

and noon reactions to one such manifest in more than 90 percent of humans catch the ab stein bow 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 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. 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 her leon ah,

eileen is now taking part in one of utter bears and studies. the professor and her team are looking at the course of the disease in emmy c. f, as patients, eileen's pulse on blood pressure are taken regularly, and her blood 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? 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 you stigmatization gets in the way of both treatment and scientific attention or vendome, as me at aunt, or with

a doubt and yet st. english. and but at the moment we are thankful for support from the us national institute of health without him the n i h of d there directly with getting 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 i shall, if with 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. fs. cutting 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 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 never heard of dog on a on cried go. stalsen be my alger consent. hello my allied us, follow me really. and i thought yes that's it. can all my negotiator let us collusion, love 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. if pregnant aunt 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 a life of us. 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 roy, and would be fighting it for a long time before i could get better again. because if it wasn't, and it's not even clear whether i ever will get better again, guys of this wonderful model. ah it's it's, it's still a good one. we're in your process that began 9 years ago with pneumonia. oh. and in the weeks and years sort of followed talking with you, i haven't been able to get myself back to where i was would says on beach as well

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 shower at a hospital she diagnosed him with emmy cfs in 2016 and her lips 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. and 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. and 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. yeah, yes. all to him you neurotransmitters and smith are no ninty back in. they 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 from june, it starts and this may mean that exertion can lead your muscles not being properly supplied with blood 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's 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 not, not infect soon begin the infection, ramps up the immune system and it doesn't return to its original state. via indifferent was death. we assumed that this overactive or mr. late to deny in response then takes over the function of the autonomic nervous system. in 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, bladder cannot flow freely through the vessels,

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, but the charity team found indications that antibodies don't function correctly in m e c, f s. patients muscles don't get enough oxygen. half lipp curs antibodies are being examined. the reason that that didn't had anti coughing, 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 within the light ice. be so glow in

a slightly different color. their patent way and then we can see this patient react more to the front part. if i got another to the middle part off, 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 both bog microbiologist and their ologist doctor, boop, hash prostate and his team are awaiting the samples. i personally am very fascinated to search for be infectious causes behind the disease. if at all the ease of viral infection being associated in this disease, and if we can find out this virus association can be proof at the molecule 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 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. 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 m e v 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. f. as patience 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 spaces which caught us 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 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 in the immune response. they cannot fight him any infection.

and they produce less energy, the 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 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. s. research in germany. donations are all he has low self. emmie 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 patience, 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, less symbolic for the millions of people who have disappeared from public life. others 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 at the root ma 100 or with a handful or perhaps 10 people. we launched millions missing germany named and then planned and carried out. our 1st events. landon dory d for dog treatment in germany for emi cfs. patients is catastrophic. and they have no access to treatment, one half to fi, legal battles for every small step like getting a wheelchair and sometimes even subjected to consider all stigmatization and discriminate system in the on off is us. ah,

with session was ha, ha, ha, ha ha, 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 family, 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 a 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 the of us can perhaps be a variant dylan, what them indices and with a role for what the antibodies under meal infos heights. 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 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 my athena gravis. scientists believe that emmy c fs 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 see man or scientists then initiated double blind randomised. 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,

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 state, 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 dances to her and they do that. this is a green dot that we also see in some standard 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 to patton montez, looked up 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 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 close to smells or olive muzzles there. it's as though you just don't exist anymore. yeah. mishma as of officers till 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 didn't notice it'll, i must fight plots and they are i think that around one or 2 percent of those who had a mild case of clover 19 could develop cfs and requirements. however,

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 our trend in fargo from culver come in. international researchers, including boop, ash prestige are rushing to investigate the long term effects of coven 19. he doesn't think for sars covey to 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 patients. at this moment we are

talking that symptoms of him is here for space. and so similar to these patients who have this long covert, but we don't know it, it's just simply an association. these know proven her data to say that okay, a long covert basin is now an embassy of his basin essence, religion love. i love camelia, i left school and decided to do remote learning. to finish schooling. 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. he is not he, in federal he most most families leave. he was in use lack of hope. after talking with us on health known events, been given to pets and we wish we could meet patients much earlier. i had been, we wish the illness i clinical picture was more widely known. and that any patients

who haven't recovered 3 months after an 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 him to remind her to be handled to begin. and we would then see fewer patients in such a poor condition, touched on clifton after our millions of patients around the world, a hoping for salvation from norway. the results of the 2 year re took them out. trial are eagerly awaited but then disappointment. the trial is negative. retook the 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 her 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 study. for example, lower doses in maintenance, treatment, which may have had an influence on this. the scientists had to half 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 plant 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 or the specialist has problems and putting the diagnosis of the

patient response 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, malibu, 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 on, we keep looking at 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 all's missing 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, ah, a oh. ah, i have a weapon. the music, a consolation film, croton living was displacement destruction and a war the so and the on march 21 in 30 minutes on dw.

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ah, ah, this is debbie news live from berlin, a show of solidarity for the ukrainian people. british prime minister born johnson goes to keven, meets with the leukemia zalinski, ukrainian president crazes the united kingdom for taking a leading role in ada ukraine's defense. also on the program, sri lankan is called for their president to step down immediately. his anger and anxiety grow over the nation's worsening economic crisis. tens of thousands of people take to the streets of the capital, colombo in a day of protest.