AUSTRIA, AUGUST 2024: Mila's mother Sabine uses handsignals to communicate to her daughter so that she keeps the stimulus her daughter experieinces to a minimum. This is all that Mila can handle, no light, no sounds, nothing that could worsen her condition. Mila Hermisson is 21 years old and has been severely ill since 2018 due to an Influenza-Infection. She lives in a nightmare she can't wake up from. Mila is seriously ill with ME/CFS. She has been lying motionless in a dark room for almost four years - even light leads to sensory overload and overexertion. Her parents, Joachim and Sabine, have been caring for her for almost four years. They feed her liquid food in sippy cups. They wash her in bed. They lift her onto a night chair to relieve herself. For one minute. Because Mila can't sit upright for longer than that. A racing heart, dizziness, barely clear thoughts, pain and an unimaginable lack of strength accompany her every day. Mila can no longer speak . “But the worst thing is that she can no longer stand it when others speak,” says her mother Sabine Hermisson. With ME/CFS, every effort is dangerous, even cognitive ones. Every stimulus that has to be processed, every movement, can overload her and push her even further into the disease. On good days, Mila can cope with individual words. She communicates how many with her fingers. Sometimes one word, never more than three - usually not a single one. One word more than agreed - even that would be crossing the line with unclear consequences. Mila and her parents therefore usually use hand signals that they have worked out together. A tap on the mattress when it gets too much. Putting their fingertips together when Mila needs medication. “You can lose your life without dying,” Mila's doctor is quoted as saying in a Spiegel article. “That sums it up,” says Mila's father Joachim Hermisson. Mila has been living with ME/CFS since she was 15. Now 21, Mila used to play the cello in the living room while he
AUSTRIA, AUGUST 2024: Mila's mother Sabine lifts her severely ill daughter off the bed to use a commode. Mila's parents keep the stimulus she experieinces to a minimum. Any stimulus affects Mila, so no light, no sounds, nothing that could worsen her condition. Mila Hermisson is 21 years old and has been severely ill with ME/CFS since 2018.. She has been lying motionless in a dark room for almost four years. Her parents, Joachim and Sabine, have been caring for her for almost four years. They feed her liquid food in sippy cups. They wash her in bed. They lift her onto a night chair to relieve herself. For one minute. Because Mila can't sit upright for longer than that. A racing heart, dizziness, barely clear thoughts, pain and an unimaginable lack of strength accompany her every day. Mila can no longer speak . “But the worst thing is that she can no longer stand it when others speak,” says her mother Sabine Hermisson. On good days, Mila can cope with individual words. She communicates how many with her fingers. Sometimes one word, never more than three - usually not a single one. Mila and her parents therefore usually use hand signals that they have worked out together. A tap on the mattress when it gets too much. Putting their fingertips together when Mila needs medication. If Mila urgently needed a medical intervention such as an operation, there wouldn't be a hospital or outpatient clinic in the whole of Austria to help her. Not a single contact point specializes in ME/CFS and has created conditions in which severely affected patients can be treated. Neither nursing nor palliative care services have agreed to care for Mila - they are not geared towards cases like hers despite Austria being a first world wealthy country.
AUSTRIA, AUGUST 2024: Mila's father Joachim gives his severely ill daughter food and water in a dark room while using only a tiny green light. He puts moisturiiser on her lips to prevent them from cracking. Mila's parents keep the stimulus she experieinces to a minimum. Any stimulus affects Mila, so no light, no sounds, nothing that could worsen her condition. Mila Hermisson is 21 years old and has been severely ill with ME/CFS since 2018 due to an Influenza-Infection. She has been lying motionless in a dark room for almost four years. Her parents, Joachim and Sabine, have been caring for her for almost four years. They feed her liquid food in sippy cups. They wash her in bed. They lift her onto a night chair to relieve herself. For one minute. Because Mila can't sit upright for longer than that. A racing heart, dizziness, barely clear thoughts, pain and an unimaginable lack of strength accompany her every day. Mila can no longer speak . “But the worst thing is that she can no longer stand it when others speak,” says her mother Sabine Hermisson. On good days, Mila can cope with individual words. She communicates how many with her fingers. Sometimes one word, never more than three - usually not a single one. Mila and her parents therefore usually use hand signals that they have worked out together. A tap on the mattress when it gets too much. Putting their fingertips together when Mila needs medication. If Mila urgently needed a medical intervention such as an operation, there wouldn't be a hospital or outpatient clinic in the whole of Austria to help her. Not a single contact point specializes in ME/CFS and has created conditions in which severely affected patients can be treated. Neither nursing nor palliative care services have agreed to care for Mila - they are not geared towards cases like hers despite Austria being a first world wealthy country.
AUSTRIA, AUGUST 2024: Ella Hermisson holds a book from the last time she and her sister Mila were healthy and together on a trip to the US. That was in 2016. Both sisters became severely ill shortly after that and while Ella has recovered a good deal, Mila remains severely ill and completely dependent on her parents and Ella. Ella was recently studying Medicine but had to stop as she was just not strong enough. She has recently resumed her studies.
AUSTRIA, AUGUST 2024: A portrait of Joachim Hermisson, traumatized by his daughter Mila's illness. Mila Hermisson is 21 years old and has been severely ill since 2018 due to an Influenza-Infection. She lives in a nightmare she can't wake up from. Mila is seriously ill with ME/CFS. She has been lying motionless in a dark room for almost four years - even light leads to sensory overload and overexertion. Her parents, Joachim and Sabine, have been caring for her for almost four years. They feed her liquid food in sippy cups. They wash her in bed. They lift her onto a night chair to relieve herself. For one minute. Because Mila can't sit upright for longer than that. A racing heart, dizziness, barely clear thoughts, pain and an unimaginable lack of strength accompany her every day. Mila can no longer speak . “But the worst thing is that she can no longer stand it when others speak,” says her mother Sabine Hermisson. With ME/CFS, every effort is dangerous, even cognitive ones. Every stimulus that has to be processed, every movement, can overload her and push her even further into the disease. On good days, Mila can cope with individual words. She communicates how many with her fingers. Sometimes one word, never more than three - usually not a single one. One word more than agreed - even that would be crossing the line with unclear consequences. Mila and her parents therefore usually use hand signals that they have worked out together. A tap on the mattress when it gets too much. Putting their fingertips together when Mila needs medication. “You can lose your life without dying,” Mila's doctor is quoted as saying in a Spiegel article. “That sums it up,” says Mila's father Joachim Hermisson. Mila has been living with ME/CFS since she was 15. Now 21, Mila used to play the cello in the living room while her mother cooked. She was a diligent student. She was committed to climate protection. Today, all that feels like a different life. Today, Mila's life is a medic
AUSTRIA, AUGUST 2024: Sabine Hermisson weeps quietly after visitng her severely ill daughter Mila in her darkened bedroom. Mila can no longer tolerate voices so they maintain a silent years long vigil over their child. Mila Hermisson is 21 years old and has been severely ill since 2018 due to an Influenza-Infection. She lives in a nightmare she can't wake up from. Mila is seriously ill with ME/CFS. She has been lying motionless in a dark room for almost four years - even light leads to sensory overload and overexertion. Her parents, Joachim and Sabine, have been caring for her for almost four years. They feed her liquid food in sippy cups. They wash her in bed. They lift her onto a night chair to relieve herself. For one minute. Because Mila can't sit upright for longer than that. A racing heart, dizziness, barely clear thoughts, pain and an unimaginable lack of strength accompany her every day. Mila can no longer speak . “But the worst thing is that she can no longer stand it when others speak,” says her mother Sabine Hermisson. With ME/CFS, every effort is dangerous, even cognitive ones. Every stimulus that has to be processed, every movement, can overload her and push her even further into the disease. On good days, Mila can cope with individual words. She communicates how many with her fingers. Sometimes one word, never more than three - usually not a single one. One word more than agreed - even that would be crossing the line with unclear consequences. Mila and her parents therefore usually use hand signals that they have worked out together. A tap on the mattress when it gets too much. Putting their fingertips together when Mila needs medication. “You can lose your life without dying,” Mila's doctor is quoted as saying in a Spiegel article. “That sums it up,” says Mila's father Joachim Hermisson. Mila has been living with ME/CFS since she was 15. Now 21, Mila used to play the cello in the living room while her mother cooked. She was a diligent stud
AUSTRIA, AUGUST 2024: Madeleine Martos,35, has had ME/CFS since 2017, since 2018 she is housebound. Madeleine used to be a very active TV- and radio journalist but had to move to a small village because the city noise became too much. Madeleine’s husband Daniel, also a journalist, changed his career to psychotherapy to spend as much time as he can with her. Every day Madeleine tries to walk the dogs in the morning. She must stop often and sometimes even crawl to make it. Her husband Daniel takes care of most of the household chores as well as the garden and Madeleine feels guilty about this. Madeleine spends her days listening to podcasts. Reading is too exhausting, she says, even short emails take up a lot of energy. An electric wheelchair would help Madeleine immensely, but her health insurance denied it, “They do not understand. They said I am not paralyzed so I don't need it” Every ten days Madeleine takes immunoglobulins and sets up the infusions herself as the doctor visits are too difficult. She says these infusions are what keep her going. Before going to sleep every night, the two ask each other where they will meet in their dreams, they always add in a place where Madeleine is healthy.
AUSTRIA, AUGUST 2024: Madeleine Martos,35, has had ME/CFS since 2017, since 2018 she is housebound. Madeleine used to be a very active TV- and radio journalist but had to move to a small village because the city noise became too much. Madeleine’s husband Daniel, also a journalist, changed his career to psychotherapy to spend as much time as he can with her. Every day Madeleine tries to walk the dogs in the morning. She must stop often and sometimes even crawl to make it. Her husband Daniel takes care of most of the household chores as well as the garden and Madeleine feels guilty about this. Madeleine spends her days listening to podcasts. Reading is too exhausting, she says, even short emails take up a lot of energy. An electric wheelchair would help Madeleine immensely, but her health insurance denied it, “They do not understand. They said I am not paralyzed so I don't need it” Every ten days Madeleine takes immunoglobulins and sets up the infusions herself as the doctor visits are too difficult. She says these infusions are what keep her going. Before going to sleep every night, the two ask each other where they will meet in their dreams, they always add in a place where Madeleine is healthy.
AUSTRIA, AUGUST 2024: Madeleine Martos,35, has had ME/CFS since 2017, since 2018 she is housebound. She is seen crying while resting while climbing the stairs in her home, she cannot usually climb them in one effort. Madeleine used to be a very active TV- and radio journalist but had to move to a small village because the city noise became too much. Madeleine’s husband Daniel, also a journalist, changed his career to psychotherapy to spend as much time as he can with her. Every day Madeleine tries to walk the dogs in the morning. She must stop often and sometimes even crawl to make it. Her husband Daniel takes care of most of the household chores as well as the garden and Madeleine feels guilty about this. Madeleine spends her days listening to podcasts. Reading is too exhausting, she says, even short emails take up a lot of energy. An electric wheelchair would help Madeleine immensely, but her health insurance denied it, “They do not understand. They said I am not paralyzed so I don't need it” Every ten days Madeleine takes immunoglobulins and sets up the infusions herself as the doctor visits are too difficult. She says these infusions are what keep her going. Before going to sleep every night, the two ask each other where they will meet in their dreams, they always add in a place where Madeleine is healthy.
AUSTRIA, AUGUST 2024: Madeleine Martos lies on the floor in the excercise room while her husband Daniel works out. Maddy used to be very sporty but due to her severe illness she can only watch these days. Desptie that, Maddy and Daniel manage to laugh about it on her better days. Madeleine Martos is 35 years old, she has had ME/CFS since 2017, and since 2018 she is housebound. She is also living with a diagnosis of SFN, MCAS and POTS. Madeleine lived in Vienna but had to move to a small village with 300 people because the noise in the city became too much for her. Madeleine used to be a TV- and radio journalist, she now lives with her husband Daniel and their two dogs. He has changed his career to psychotherapy and tries to spend as much time as he can with Madeleine. Madeleine is living in a terraced house they rent. It is pastoral and quiet but it is a two story house and climbing the stairs can sometimes take Maddy twenty minutes and rob her of limited energy for the rest of the day.When she wakes up, she takes her pills, she then needs a few hours until she is able to start her day because the pain is too much to handle, before the pills kick in.Every day Madeleine tries to walk the dogs in the morning for half an hour, once she is ableto. Many times she has to stop and even crawl rather than walking. She does not go far, but the walk gives her day structure. That is important to her.Afterwards she has to sit or lay on the couch for at least one hour. On some days she staysthere the whole day and then even having a shower is a success. Her husband Daniel takes care of most of the household chores as well as the garden and Madeleines feels guilty about this. He also works a lot as a psychotherapist in the clinic nearby where he tries to also support people with ME/CFS there. Madeleine tries to stay on the couch instead of the bed – she knows that sitting is better so her blood circulation does not go down too much. That makes getting up even harder. Man
AUSTRIA, AUGUST 2024: Madeleine Martos,35, has had ME/CFS since 2017, since 2018 she is housebound. Madeleine used to be a very active TV- and radio journalist but had to move to a small village because the city noise became too much. She nows spends most of her day resting, listening to podcasts. Madeleine’s husband Daniel, also a journalist, changed his career to psychotherapy to spend as much time as he can with her. Every day Madeleine tries to walk the dogs in the morning. She must stop often and sometimes even crawl to make it. Her husband Daniel takes care of most of the household chores as well as the garden and Madeleine feels guilty about this. Madeleine spends her days listening to podcasts. Reading is too exhausting, she says, even short emails take up a lot of energy. An electric wheelchair would help Madeleine immensely, but her health insurance denied it, “They do not understand. They said I am not paralyzed so I don't need it” Every ten days Madeleine takes immunoglobulins and sets up the infusions herself as the doctor visits are too difficult. She says these infusions are what keep her going. Before going to sleep every night, the two ask each other where they will meet in their dreams, they always add in a place where Madeleine is healthy.
AUSTRIA, AUGUST 2024: Madeleine Martos,35, has had ME/CFS since 2017, since 2018 she is housebound. She has a great deal of pain and she says floating in the small inflatable pool in her backyard helps with that, releiving her body temporarily. Madeleine used to be a very active TV- and radio journalist but had to move to a small village because the city noise became too much. Madeleine’s husband Daniel, also a journalist, changed his career to psychotherapy to spend as much time as he can with her. Every day Madeleine tries to walk the dogs in the morning. She must stop often and sometimes even crawl to make it. Her husband Daniel takes care of most of the household chores as well as the garden and Madeleine feels guilty about this. Madeleine spends her days listening to podcasts. Reading is too exhausting, she says, even short emails take up a lot of energy. An electric wheelchair would help Madeleine immensely, but her health insurance denied it, “They do not understand. They said I am not paralyzed so I don't need it” Every ten days Madeleine takes immunoglobulins and sets up the infusions herself as the doctor visits are too difficult. She says these infusions are what keep her going. Before going to sleep every night, the two ask each other where they will meet in their dreams, they always add in a place where Madeleine is healthy.
AUSTRIA, AUGUST 2024: Madeleine Martos,35, has had ME/CFS since 2017, since 2018 she is housebound. Madeleine used to be a very active TV- and radio journalist but had to move to a small village because the city noise became too much. Madeleine’s husband Daniel, also a journalist, changed his career to psychotherapy to spend as much time as he can with her. Every day Madeleine tries to walk the dogs in the morning. She must stop often and sometimes even crawl to make it. Her husband Daniel takes care of most of the household chores as well as the garden and Madeleine feels guilty about this. Madeleine spends her days listening to podcasts. Reading is too exhausting, she says, even short emails take up a lot of energy. An electric wheelchair would help Madeleine immensely, but her health insurance denied it, “They do not understand. They said I am not paralyzed so I don't need it” Every ten days Madeleine takes immunoglobulins and sets up the infusions herself as the doctor visits are too difficult. She says these infusions are what keep her going. Before going to sleep every night, the two ask each other where they will meet in their dreams, they always add in a place where Madeleine is healthy.
AUSTRIA, AUGUST 2024: Madeleine Martos,35, has had ME/CFS since 2017, since 2018 she is housebound. She is seen giving herself a self-administered infusion, she says these are vital to keep her going and she has given herself hundereds of these. Madeleine used to be a very active TV- and radio journalist but had to move to a small village because the city noise became too much. Madeleine’s husband Daniel, also a journalist, changed his career to psychotherapy to spend as much time as he can with her. Every day Madeleine tries to walk the dogs in the morning. She must stop often and sometimes even crawl to make it. Her husband Daniel takes care of most of the household chores as well as the garden and Madeleine feels guilty about this. Madeleine spends her days listening to podcasts. Reading is too exhausting, she says, even short emails take up a lot of energy. An electric wheelchair would help Madeleine immensely, but her health insurance denied it, “They do not understand. They said I am not paralyzed so I don't need it” Every ten days Madeleine takes immunoglobulins and sets up the infusions herself as the doctor visits are too difficult. She says these infusions are what keep her going. Before going to sleep every night, the two ask each other where they will meet in their dreams, they always add in a place where Madeleine is healthy.
AUSTRIA, AUGUST 2024: Madeleine Martos is 35 years old, she has had ME/CFS since 2017, and since 2018 she is housebound. She is also living with a diagnosis of SFN, MCAS and POTS. Madeleine lived in Vienna but had to move to a small village with 300 people because the noise in the city became too much for her. Madeleine used to be a TV- and radio journalist, she now lives with her husband Daniel and their two dogs. He has changed his career to psychotherapy and tries to spend as much time as he can with Madeleine. Madeleine is living in a terraced house they rent. It is pastoral and quiet but it is a two story house and climbing the stairs can sometimes take Maddy twenty minutes and rob her of limited energy for the rest of the day.When she wakes up, she takes her pills, she then needs a few hours until she is able to start her day because the pain is too much to handle, before the pills kick in.Every day Madeleine tries to walk the dogs in the morning for half an hour, once she is ableto. Many times she has to stop and even crawl rather than walking. She does not go far, but the walk gives her day structure. That is important to her.Afterwards she has to sit or lay on the couch for at least one hour. On some days she staysthere the whole day and then even having a shower is a success. Her husband Daniel takes care of most of the household chores as well as the garden and Madeleines feels guilty about this. He also works a lot as a psychotherapist in the clinic nearby where he tries to also support people with ME/CFS there. Madeleine tries to stay on the couch instead of the bed – she knows that sitting is better so her blood circulation does not go down too much. That makes getting up even harder. Manytimes she still has to lay in bed, because even sitting is too much. Madeleine spends her days listening to podcasts (“They keep me sane, because I am aloneall of the time”). Sometimes she paints or knits. She can’t really read anymore. Even short email
AUSTRIA, AUGUST 2024: Carmen Rinnhofer is 29 years old and has been severely ill with ME/CFS since 2022 after a corona infection. CArmen has not left the house in over two years. She communicates with the outside world via her phone and she tries to be active on twitter X. Carmen is vocal online on how ME/CFS has a gender bias towards women and she feels the medical community has not responded appropriately. Carmen loved sport, traveling and learning. Carmen had just completed her master’s degree in transcultural communication when she fell ill. She speaks four languages. She lived in France twice and was a regular jogger. She had only just discovered road cycling when she contracted coronavirus., despite being vaccinated three times. Carmen usually lies in the dark alone. If she spends ten minutes daily with her mother, Erika Siebenbrunner, they consider that a success. On normal days, Erika has to leave the room after five minutes, even if they don't talk to each other. On good days, which are rare, Carmen can take a bath with the help of her mother. If possible, she writes to her friends or talks about her condition on social media. Both are very difficult. Carmen has a deep awareness that the majority of ME/CFS sufferers are young and female. “The decades of neglect and the persistent lack of care and recognition can be attributed to this fact, among other things,” Carmen once wrote on the X platform.
AUSTRIA, AUGUST 2024: Carmen Rinnhofer is 29 years old and has been severely ill with ME/CFS since 2022 after a corona infection. Sport, traveling, learning. That's what Carmen Rinnhofer loved. She has lost all three of these things - and much more besides. Carmen had just completed her master’s degree in transcultural communication when she fell ill. She speaks four languages. She lived in France twice and was a regular jogger. She had only just discovered road cycling when she contracted coronavirus. Carmen had already been vaccinated three times. Nevertheless, she is now seriously ill with ME/CFS. She hasn't left the house for almost two years. Carmen usually lies in the dark, all alone. If she spends ten minutes with her mother, Erika Siebenbrunner, that is already a success. On normal days, Erika has to leave the room after five minutes, even if they don't talk to each other.On good days, which are rare, Carmen can take a bath with the help of her mother. If possible, she writes to her friends or talks about her condition on social media. Both are very difficult. Carmen has a deep awareness that the majority of ME/CFS sufferers are young and female. “The decades of neglect and the persistent lack of care and recognition can be attributed to this fact, among other things,” Carmen once wrote on the X platform (formerly Twitter). She is a political person - and a staunch feminist. The thesis from her X post, that supposed “women's diseases” are less well researched and treated, has long been proven. Carmen also receives no financial support from the state. She and her mother know how ruthless the application process often is - with almost no chance of home visits by doctors carrying out assessments. “I can't do that to her unless I really have to,” says Carmen's mother Erika. The daughter's isolation also leads to the mother's isolation. “My life is all about work, shopping and looking after Carmen,” says Erika. She has to be at home if her d
AUSTRIA, AUGUST 2024: Carmen Rinnhofer is 29 years old and has been severely ill with ME/CFS since 2022 after a Covid infection, she has not left her house in over two years. When she goes to the bathroom she has to save her strength for only one or two visits a day. Carmen communicates with the outside world via her phone and she tries to be active on twitter X. Carmen is vocal online on how ME/CFS has a gender bias towards women and she feels the medical community has not responded appropriately. Carmen loved sport, traveling and learning. Carmen had just completed her master’s degree in transcultural communication when she fell ill. She speaks four languages. She had only just discovered road cycling when she contracted coronavirus., despite being vaccinated three times. Carmen usually lies in the dark alone. If she spends ten minutes daily with her mother, Erika Siebenbrunner, they consider that a success. On normal days, Erika has to leave the room after five minutes, even if they don't talk to each other. On good days, which are rare, Carmen can take a bath with the help of her mother. If possible, she writes to her friends or talks about her condition on social media. Both are very difficult. Carmen has a deep awareness that the majority of ME/CFS sufferers are young and female. “The decades of neglect and the persistent lack of care and recognition can be attributed to this fact, among other things,” Carmen once wrote on the X platform.
AUSTRIA, AUGUST 2024: Carmen Rinnhofer is 29 years old and has been severely ill with ME/CFS since 2022 after a corona infection. She struggles to go to the bathroom and has to sit on the floor while brushing her teeth. Carmen remains determined however and hopes for a medical breakthrough. Sport, traveling, learning. That's what Carmen Rinnhofer loved. She has lost all three of these things - and much more besides. Carmen had just completed her master’s degree in transcultural communication when she fell ill. She speaks four languages. She lived in France twice and was a regular jogger. She had only just discovered road cycling when she contracted coronavirus. Carmen had already been vaccinated three times. Nevertheless, she is now seriously ill with ME/CFS. She hasn't left the house for almost two years. Carmen usually lies in the dark, all alone. If she spends ten minutes with her mother, Erika Siebenbrunner, that is already a success. On normal days, Erika has to leave the room after five minutes, even if they don't talk to each other.On good days, which are rare, Carmen can take a bath with the help of her mother. If possible, she writes to her friends or talks about her condition on social media. Both are very difficult. Carmen has a deep awareness that the majority of ME/CFS sufferers are young and female. “The decades of neglect and the persistent lack of care and recognition can be attributed to this fact, among other things,” Carmen once wrote on the X platform (formerly Twitter). She is a political person - and a staunch feminist. The thesis from her X post, that supposed “women's diseases” are less well researched and treated, has long been proven. Carmen also receives no financial support from the state. She and her mother know how ruthless the application process often is - with almost no chance of home visits by doctors carrying out assessments. “I can't do that to her unless I really have to,” says Carmen's mother Erika. The daught
AUSTRIA, AUGUST 2024: Erika Siebenbrunner's daughter Carmen is severely ill with ME/CFS and since 2022, Erika has devoted her life to her daughters care. Carmen Rinnhofer is 29 years old and has been severely ill with ME/CFS since 2022 after a corona infection. Carmen hasn't left the house for almost two years. Carmen usually lies in the dark, all alone. If she spends ten minutes with her mother, Erika Siebenbrunner, that is already a success. On normal days, Erika has to leave the room after five minutes, even if they don't talk to each other. On good days, which are rare, Carmen can take a bath with the help of her mother.
Austria, August 2024: Kornelia Spahn is a former teacher, and painting is her true passion. She has been ill for over 5 years with ME/CFS but still tries to continue with her painting. On good days, she can sit and paint, on most days she must lie down on the canvas and work very slowly. Kornelia has a great deal of pain and often when she tries to paint, she cries as her body fails her. Her sister Sabine is a doctor, and has been a rock for Kornelia, visiting every day and making sure Kornelia has what she needs. Sabine also gives Kornelia regular infustions, which help and make life more bearable for Kornelia.
Austria, August 2024: Kornelia Spahn is a former teacher, and painting is her true passion. She has been ill for over 5 years with ME/CFS but still tries to continue with her painting. On good days, she can sit and paint, on most days she must lie down on the canvas and work very slowly. Kornelia has a great deal of pain and often when she tries to paint, she cries as her body fails her. Her sister Sabine is a doctor, and has been a rock for Kornelia, visiting every day and making sure Kornelia has what she needs. Sabine also gives Kornelia regular infustions, which help and make life more bearable for Kornelia.
AUSTRIA, AUGUST 2024: Gerhard Strock and his wife Gabrielle are seen at one of their bakeries. They are successful businesspeople who own many bakeries across Austria. They have three adult sons and two of them have been living with ME/CFS for some time. One of them is improving very slowly and takes prescribed meds and does whatever he can to get better. The other has not allowed his parents to see him for over 4 years, he does not take any of the prescribed medicine due to his fear of side effects and he has talked about whether he wants to live or not. He lives in seclusion in a dark room and is very weak. Gerhard and Gabrielle founded the WE/ME foundation in Austria to support people living with ME/CFS and seek to drive medical research and public awareness of this issue. (Photo by Brent Stirton/Getty Images.)
Austria, August 2024: Elisabeth Bacher, 55, cries quielty in her kitchen under a photograph of her 4 children. Elizabeth is severely ill with ME/CFS but she is also the only caregiver for her daughter Lisa, who is 27 years old and has been ill with ME/CFS since 2011 after a swine flu infection. They receive no help from the state and Elisabeth put's her daughter's health ahead of her own at all times but is fearful of what the future may bring.
Austria, August 2024: Elizabeth Bacher,55, helps her daughter Lisa, 27, wake up after a troubled night. She brings cold face clothes to help Lisa cool down. Elizabeth is severely ill with ME/CFS after contracting Covid but she is also the only caregiver for her daughter Lisa, who is 27 years old and has been ill with ME/CFS since 2011 after a swine flu infection. They receive no help from the state and Elisabeth put's her daughter's health ahead of her own at all times but is fearful of what the future may bring.
Austria, August 2024: Lisa Bacher & Elisabeth Bacher spent most of their time in their living room, they are most often too weak to leave the house. Elizabeth is severely ill with ME/CFS after contracting Covid but she is also the only caregiver for her daughter Lisa, who is 27 years old and has been ill with ME/CFS since 2011 after a swine flu infection. They receive no help from the state and Elisabeth put's her daughter's health ahead of her own at all times but is fearful of what the future may bring.
Austria, August 2024: Lisa Bacher & Elisabeth Bacher spent most of their time in their living room, often too weak to leave the house. Lisa is 27 years old is has been ill since 2011 after a swine flu infection Elisabeth is 55 years old and she received a post-Covid diagnosis since 2023, first symptoms since 2011. Neither Lisa Bacher nor her mother Elisabeth Bacher could have imagined this before it happened. Even more unimaginable: that Elisabeth herself would become so ill that Lisa's support would be almost impossible to manage at times. How did this happen? In 2011, mother and daughter were infected with swine flu. Lisa still felt ill weeks later. She was 14 years old at the time. After the infection, Lisa tried to go for a run in the forest. “The next day, I suddenly couldn't walk anymore,” Lisa remembers. She lacked the strength. She had her first crash - a worsening of symptoms after overexertion. Doctors blame the symptoms on Lisa's psyche. A young girl at the beginning of puberty. You're often tired then, they say. It took years before Lisa was finally diagnosed with ME/CFS. A long time during which she got worse and worse. Elisabeth Bacher was also affected by the swine-flu infection. The single mother of four children who previously had two jobs and volunteered at school alongside childcare. After the infection, she feels as if she has aged 30 years. What's more, her eldest daughter suddenly needed a lot more support in her everyday life. At the time, Elisabeth lacked the energy for anything else in addition to her work and caring for Lisa and her siblings. Her doctor now says that it probably all started back then. Volunteering, social contacts and hobbies have to be put on hold. Despite this, Elisabeth was still in a bad way. She quit first one and then her second job. “At some point, it was just about keeping Lisa and me alive,” says Elisabeth. Nevertheless, she told herself at the time that she was just overworked. The years pass and Lisa
Austria, August 2024: Lisa Bacher & Elisabeth Bacher are seen with their rescue dog Lily. Lily is trained to bring Lisa's meds to her and also to alert Lisa if her heart rate drops. Lisa is 27 years old and has been ill since 2011 after a swine flu infection. Elisabeth is 55 years old and she received a post-Covid diagnosis since 2023, Among other things, she is trained to nudge Lisa when her heart rate is too high. Lisa then knows that she needs to sit or lie down. Lili is also a great emotional support. One of Elisabeth and Lisa's biggest worries is that they will no longer be able to look after Lili and that they will have to give up their beloved dog.
Austria, August 2024: Lisa Bacher & Elisabeth Bacher rest in their bed and review ME/CFS awareness campaigns that Lisa has created on her computer. . Lisa is 27 years old and has been ill since 2011 after a swine flu infection Elisabeth is 55 years old and she received a post-Covid diagnosis since 2023, first symptoms since 2011. Neither Lisa Bacher nor her mother Elisabeth Bacher could have imagined this before it happened. Even more unimaginable: that Elisabeth herself would become so ill that Lisa's support would be almost impossible to manage at times. How did this happen? In 2011, mother and daughter were infected with swine flu. Lisa still felt ill weeks later. She was 14 years old at the time. After the infection, Lisa tried to go for a run in the forest. “The next day, I suddenly couldn't walk anymore,” Lisa remembers. She lacked the strength. She had her first crash - a worsening of symptoms after overexertion. Doctors blame the symptoms on Lisa's psyche. A young girl at the beginning of puberty. You're often tired then, they say. It took years before Lisa was finally diagnosed with ME/CFS. A long time during which she got worse and worse. Elisabeth Bacher was also affected by the swine-flu infection. The single mother of four children who previously had two jobs and volunteered at school alongside childcare. After the infection, she feels as if she has aged 30 years. What's more, her eldest daughter suddenly needed a lot more support in her everyday life. At the time, Elisabeth lacked the energy for anything else in addition to her work and caring for Lisa and her siblings. Her doctor now says that it probably all started back then. Volunteering, social contacts and hobbies have to be put on hold. Despite this, Elisabeth was still in a bad way. She quit first one and then her second job. “At some point, it was just about keeping Lisa and me alive,” says Elisabeth. Nevertheless, she told herself at the time that she was just overworked. The year
Austria, August 2024: Lisa Bacher, 27, and her mother Elisabeth Bacher, 55, are seen in their bedroom as Elisabeth dries Lisa's hair. Lisa must wear a blindfold and hearing suppression for this. Lisa has been ill with ME/CFS since 2011 after a swine flu infection. Elisabeth received a post-Covid diagnosis of ME/CFS in 2023, first symptoms since 2020. Elisabeth is Lisa’s only caregiver, despite being severely ill herself. She is the single mother of four children who previously had two jobs and volunteered at school. “At some point, it just became about keeping Lisa and me alive,” says Elisabeth. Lisa says a crash feels, “As if someone has sucked all the energy out of me or pulled the plug,” says Lisa. She wants to continue being active, but her body goes on strike. Sometimes she can't even move her arms. “You feel trapped in your own body. It's particularly bad when you can no longer speak or use your cell phone,” says Lisa. ‘If she had been treated properly earlier, she would be better today,’ says Elisabeth. Lisa can only leave the house if someone can be found to help with the wheelchair transport. Elisabeth was only able to finance Lisa’s wheelchair and the stair lift to the house with the help of neighbors and the local church. Lisa’s assistance dog Lili is trained to nudge Lisa when her heart rate is too high. Lisa then knows that she needs to sit or lie down. Lili is also a great emotional support.
Austria, August 2024: Lisa Bacher is 27 years old and has been ill with ME/CFS since 2011 after a swine flu infection. She was always a very slim girl but the medication she is now using has led to her gaining over 25 kilograms. She is still trying to get used to her new body.
Austria, August 2024: Lisa Bacher & Elisabeth Bacher are seen with Lisa's rescue dog Lily using the wheel chair and chair lift donated to them by their church and neighbors. The Austrian medical authority decided that they did not need these things despite the fact the both Lisa and Elizabeth are severely ill. .Lisa is 27 years old and has been ill with ME/CFS since 2011 after a swine flu infection. Elisabeth is 55 years old and she received a post-Covid diagnosis in 2023.
Austria, August 2024: Lisa Bacher & Elisabeth Bacher attend a dog training session with Lisa's rescue dog Lily. This is designed to teach Lily to be calm around other dogs and new people. This session is the first time Lisa and Elisabeth have been to this forest in over 2 years, despite the fact that it is only five minutes from their home. Lisa is 27 years old and has been ill with ME/CFS since 2011 after a swine flu infection. Elisabeth is 55 years old and she received a post-Covid diagnosis of ME/CFS in 2023. They have to practise energy rationing for the most important things.
Austria, August 2024: Lisa Bacher & Elisabeth Bacher attend a dog training session with Lisa's rescue dog Lily. This is designed to teach Lily to be calm around other dogs and new people. This session is the first time Lisa and Elisabeth have been to this forest in over 2 years, despite the fact that it is only five minutes from their home. Lisa is 27 years old and has been ill with ME/CFS since 2011 after a swine flu infection. Elisabeth is 55 years old and she received a post-Covid diagnosis of ME/CFS in 2023. They have to practise energy rationing for the most important things. Elisabeth is Lisa's only caregiver, despite her own severe ME/CFS diagnosis.
Austria, August 2024: Elisabeth Bacher stand exhausted by a window, she is the sole caregiver for her daughter Lisa. Lisa is 27 years old and has been ill with ME/CFS since 2011 after a swine flu infection Elisabeth is 55 years old and she received a post-Covid diagnosis since 2023, first symptoms since 2011. Neither Lisa Bacher nor her mother Elisabeth Bacher could have imagined this before it happened. Even more unimaginable: that Elisabeth herself would become so ill that Lisa's support would be almost impossible to manage at times. How did this happen? In 2011, mother and daughter were infected with swine flu. Lisa still felt ill weeks later. She was 14 years old at the time. After the infection, Lisa tried to go for a run in the forest. “The next day, I suddenly couldn't walk anymore,” Lisa remembers. She lacked the strength. She had her first crash - a worsening of symptoms after overexertion. Doctors blame the symptoms on Lisa's psyche. A young girl at the beginning of puberty. You're often tired then, they say. It took years before Lisa was finally diagnosed with ME/CFS. A long time during which she got worse and worse. Elisabeth Bacher was also affected by the swine-flu infection. The single mother of four children who previously had two jobs and volunteered at school alongside childcare. After the infection, she feels as if she has aged 30 years. What's more, her eldest daughter suddenly needed a lot more support in her everyday life. At the time, Elisabeth lacked the energy for anything else in addition to her work and caring for Lisa and her siblings. Her doctor now says that it probably all started back then. Volunteering, social contacts and hobbies have to be put on hold. Despite this, Elisabeth was still in a bad way. She quit first one and then her second job. “At some point, it was just about keeping Lisa and me alive,” says Elisabeth. Nevertheless, she told herself at the time that she was just overworked. The years pass and Lisa and h
AUSTRIA, August 2024: Karin is the devoted wife of Hannes, who has severe ME/CFS since 2021. She is seen taking a little time for herself after she has helped Hannes back into bed. Her husband used to be a successful operations manager - until he contracted coronavirus. One week after the infection, he could only stand three-minute conversations until he collapsed. Four months later, ME/CFS was confirmed. He can only walk a few meters and can only stand for a minute at most. Karin helps him to spend time in the garden when he feels strong enough. “I love him, of course I do these things for him. It's hard, but it's even harder for him,” says Karin.
AUSTRIA, AUSUT 2024: Hannes is helped by his wife Karin into his wheelcharir along with his sunglasses and hearing protection. Karin is devoted to her husband and is always trying to help him as he struggles with ME/CFS. Hannes is 52 years old and has been severely ill with ME/CFS since 2021 after a Covid infection. Hannes D. used to be a successful operations manager - until he contracted coronavirus at the end of 2021. One week after the infection, he could only stand three-minute conversations until he collapsed. After that, he needs a half-hour break. Four months later, ME/CFS is suspected for the first time, which is later confirmed. Hannes has had to learn to respect his limits. If he doesn't every overload leads to a crash, with him lying in a dark room for days on end with severe symptoms. “Every day that is better than 22 hours of lying down is a positive day,” says Hannes. He has not lost his positive attitude. Hannes' condition improved a little by the end of 2022. Then he is infected with coronavirus again. Since then, he has only been able to leave the house in a wheelchair for very short periods. Living with ME/CFS also means constant caution so that all his progress is not lost in one severe relapse. To this day, Hannes can only walk a few meters and can only stand for a minute at most. His wife Karin cares for him. “I love him, of course I do that. It's hard, but it's even harder for him,” she says with tears in her eyes. The tenderness in their relationship has remained. They still make short trips to the garden together - these are the shared experiences that are still possible. “I hope that in a few years there will be a better medication that helps,” says Hannes. At least his previous rehab stays have helped him. The local doctors understand that ME/CFS needs adapted therapies. They treat him properly and show him strategies on how to manage his limited energy. In view of the many cases in which people with ME/CFS are made even sic
AUSTRIA, AUGUST 2024: Hannes used to be a successful operations manager - until he contracted coronavirus at the end of 2021. One week after the infection, he could only stand three-minute conversations until he collapsed. Four months later, ME/CFS was confirmed. Hannes again contracted Covid in 2022 and since then he has only been able to leave the house in a wheelchair for very short periods. Living with ME/CFS means constant caution so that all his progress is not lost in one severe relapse. Hannes often spends 22 hours a day bedridden. He can only walk a few meters and can only stand for a minute at most. His devoted wife Karin helps him to spend time in the garden when he feels strong enough. “I love him, of course I do these things for him. It's hard, but it's even harder for him,” says Karin.
AUSTRIA, AUSUT 2024: Hannes is 52 years old and has been severely ill with ME/CFS since 2021 after a Covid infection. He is seen with his devoted wife Karin as they go into the garden and spend time outdoors for a while. They have a very strong relationship and this helps them through the very tough reality of Hannes's illness. Hannes D. used to be a successful operations manager - until he contracted coronavirus at the end of 2021. One week after the infection, he could only stand three-minute conversations until he collapsed. After that, he needs a half-hour break. Four months later, ME/CFS is suspected for the first time, which is later confirmed. Hannes has had to learn to respect his limits. If he doesn't every overload leads to a crash, with him lying in a dark room for days on end with severe symptoms. “Every day that is better than 22 hours of lying down is a positive day,” says Hannes. He has not lost his positive attitude. Hannes' condition improved a little by the end of 2022. Then he is infected with coronavirus again. Since then, he has only been able to leave the house in a wheelchair for very short periods. Living with ME/CFS also means constant caution so that all his progress is not lost in one severe relapse. To this day, Hannes can only walk a few meters and can only stand for a minute at most. His wife Karin cares for him. “I love him, of course I do that. It's hard, but it's even harder for him,” she says with tears in her eyes. The tenderness in their relationship has remained. They still make short trips to the garden together - these are the shared experiences that are still possible. “I hope that in a few years there will be a better medication that helps,” says Hannes. At least his previous rehab stays have helped him. The local doctors understand that ME/CFS needs adapted therapies. They treat him properly and show him strategies on how to manage his limited energy. In view of the many cases in which people with ME/CFS are
AUSTRIA, AUGUST 2024: Hannes used to be a successful operations manager - until he contracted coronavirus at the end of 2021. One week after the infection, he could only stand three-minute conversations until he collapsed. Four months later, ME/CFS was confirmed. Hannes again contracted Covid in 2022 and since then he has only been able to leave the house in a wheelchair for very short periods. Living with ME/CFS means constant caution so that all his progress is not lost in one severe relapse. Hannes often spends 22 hours a day bedridden. He can only walk a few meters and can only stand for a minute at most. His devoted wife Karin helps him to spend time in the garden when he feels strong enough. “I love him, of course I do these things for him. It's hard, but it's even harder for him,” says Karin.
AUSTRIA, AUSUT 2024: Hannes is 52 years old and has been severely ill with ME/CFS since 2021 after a Covid infection. He is seen with his daughter Simone who is to be married in two weeks. Hannes is planning to atttend the ceremony using a wheelchair and a bed inside the church. This is likely to worsen his condition but he is determined to do it. Hannes D. used to be a successful operations manager - until he contracted coronavirus at the end of 2021. One week after the infection, he could only stand three-minute conversations until he collapsed. After that, he needs a half-hour break. Four months later, ME/CFS is suspected for the first time, which is later confirmed. Hannes has had to learn to respect his limits. If he doesn't every overload leads to a crash, with him lying in a dark room for days on end with severe symptoms. “Every day that is better than 22 hours of lying down is a positive day,” says Hannes. He has not lost his positive attitude. Hannes' condition improved a little by the end of 2022. Then he is infected with coronavirus again. Since then, he has only been able to leave the house in a wheelchair for very short periods. Living with ME/CFS also means constant caution so that all his progress is not lost in one severe relapse. To this day, Hannes can only walk a few meters and can only stand for a minute at most. His wife Karin cares for him. “I love him, of course I do that. It's hard, but it's even harder for him,” she says with tears in her eyes. The tenderness in their relationship has remained. They still make short trips to the garden together - these are the shared experiences that are still possible. “I hope that in a few years there will be a better medication that helps,” says Hannes. At least his previous rehab stays have helped him. The local doctors understand that ME/CFS needs adapted therapies. They treat him properly and show him strategies on how to manage his limited energy. In view of the many cases in which peop
AUSTRIA, VIENNA, AUGUST 2024: Herbert Anreitter showers his wife Yvonne and gently washes her hair. He is her devoted caregiver. Yvonne Anreitter has been severely ill with ME/CFS since 2020 after a Covid 19 infection. The medical authorities in Austria denied care to Yvonne when she sought help. Yvonne Arreitner has been battling with the Austrain pension insurance organization for over three years for rehabilitation and care benefits. ‘This process is so draining,’ says Yvonne. With her diagnosis, this has driven her further into the disease. When Yvonne tried to stand during the assessment of her care needs, her whole body began to tremble. And yet the assessor, who did not certify her as needing care, assumed that she was faking it - after all, her wheelchair looked unused. Yvonne says it looks unused because she can so rarely go outside.
Vienna, Austria, August 2024: Yvonne Anreitter contracted coronavirus at the end of 2020. After she recovered, severe headaches and muscle aches remained – she felt exhausted all the time. Her Long Covid diagnosis eventually became ME/CFS, POTS and MCAS. Yvonne, who worked in refugee aid before her illness, had to give up her job. Her world becomes smaller and smaller until she was confined to her bedroom. Yvonne needs the support of her husband, Herbert Anreitter, for all things. Herbert does the shopping, he cleans, he cooks, he drives her in her wheelchair to appointments to fight for disability aid that the government has continually denied her. Yvonne gets up with Herbert at five in the morning so that he can make breakfast for them before he leaves for work. Yvonne then goes back to sleep. When Herbert returns, he helps his wife get dressed. Somehow, the two still manage to maintain a loving and equal marriage. ‘We don't let anything get us down,’ says Herbert, “Yvonne is not ready to give up. “
AUSTRIA, AUSUT 2024: Herbert Anreitter places a morphine patch on his wife Yvonne's back to help her with pain management. Yvonne Anreitter is 50 years old and she has been severely ill with ME/CFS since 2020 after a Covid infection. The medical authorities in Austria were brutal with Yvonne when she sought out help for her disability. “Zero hours. That's how much care Yvonne Anreitter needs,” according to a so-called medical expert responsible for setting out aid. “Shopping, cleaning, cooking, dressing - she can do all of this without help. The same applies to work.” These are ludicrous and cruel statements. Yvonne Arreitner has been battling with the relevant pension insurance organisation (PVA) for over three years for rehabilitation and care benefits. Three years in which she has been shunted back and forth between sick leave and the AMS. Sometimes she has to send new reports to the authorities every few weeks - and pay for them herself. ‘This process is so draining,’ says Yvonne. With her diagnosis, this alone can drive her further into the disease. When Yvonne tried to stand during the assessment of her care needs, her whole body began to tremble. And yet the assessor, who did not certify her as needing care, assumed that she was faking it - after all, her wheelchair looked unused. Perhaps because she can only rarely leave the house with it? Nevertheless, the PVA emphasises that all of its assessors are certified and receive regular further training.Yvonne contracted coronavirus at the end of 2020. Even after she officially recovered, headaches and muscle aches remained - and she felt like she was exhausted. As if her body was still fighting an active infection. ‘This is much more than exhaustion,’ says Yvonne. Her Long Covid diagnosis eventually became ME/CFS, POTS and MCAS. Yvonne, who worked in refugee aid before her illness, initially tried her hand at bookkeeping - but that was also too stressful. She feels worse and worse instead of b
Vienna, Austria, August 2024: Yvonne Anreitter contracted coronavirus at the end of 2020. After she recovered, severe headaches and muscle aches remained – she felt exhausted all the time. Her Long Covid diagnosis eventually became ME/CFS, POTS and MCAS. Yvonne, who worked in refugee aid before her illness, had to give up her job. Her world becomes smaller and smaller until she was confined to her bedroom. Yvonne needs the support of her husband, Herbert Anreitter, for all things. Herbert does the shopping, he cleans, he cooks, he drives her in her wheelchair to appointments to fight for disability aid that the government has continually denied her. Yvonne gets up with Herbert at five in the morning so that he can make breakfast for them before he leaves for work. Yvonne then goes back to sleep. When Herbert returns, he helps his wife get dressed. Somehow, the two still manage to maintain a loving and equal marriage. ‘We don't let anything get us down,’ says Herbert, “Yvonne is not ready to give up. “
AUSTRIA, AUGUST 2024: Jan Equiluz, 23, has been severely ill with ME/CFS since 2023 after contracting Covid. He planned to become a professional musician, but his diagnosis changed everything. Due to ME/CFS, Jan’s extreme sensitivity to light and sound has made even listening to music painful. Jan says the isolation is the worst thing. He is angry because he feels so few people take ME/CFS seriously, Jan blames the fact that there isn't more intensive research into it by medical authorities despite over 80,000 cases being diagnosed in Austria alone.
AUSTRIA, AUGUST 2024: Petra Schaschl-Petersmann is 55 years old and she has been ill with ME/CFS since the early 1990s, after an Epstein-Barr infection. Petra is seen at a physiotherapy, session close to her home, one of many things Petra does to try to improve her quality of life. Petra comes from a wealthy background and because of this she has more options. Many people living with ME/CFS do not have these options and that often leads to further decline and strain on the family.
AUSTRIA, AUGUST 2024: Martin Privec is 30 years old and from Upper Austria. Martin has been ill since 2017 after an Epstein-Barr infection “Pfeiffer's glandular fever.” He is seen talking to a bedridden woman with ME/CFS in Berlin with whom he has an online relationship. Martin's story is a story of hope. He has been living with ME/CFS since 2017. After 10 months, at the age of 24, he became almost completely bedridden - more than one visit to the toilet a day in a wheelchair was not possible. Martin was in this condition for four years. “I became ill in my prime. But I take it as it comes,” he says. Today, after medical treatments that have worked miracles for him, Martin is playing basketball again, driving and taking care of a move himself as well as looking for a part-time job. Why is he doing so much better? At first, things didn't look good for Martin: He had to move in with his mother. But she urged him to pull himself together and finally be more active again. Even doctors don't believe Martin. He was told he is faking it, that he is just mentally distressed and needs to pull himself together. Martin decides to break off contact with his mother - and moves into an assisted living community. The majority of the people there are living with psychological issues but it is what the government health services are prepared to offer. There are no alternatives that specialized in ME/CFS. The staff there were there for him 24 hours a day. They accept his limitations, help him with his personal hygiene and bring him food to bed. Every day is hard. Every day, Martin decides to carry on regardless. “I always hoped that there was another medication that I hadn't tried yet,” he says. At some point, this hope became a reality. When Martin started taking low doses of aripiprazole (LDA) and naltrexone (LDN), things started to look up. Rebuilding a life that you have lost without dying is still not easy. For example, Martin had to have diagnoses of psychological
AUSTRIA, AUGUST 2024: Martin Privec is 30 years old and from Upper Austria. Martin has been ill since 2017 after an Epstein-Barr infection “Pfeiffer's glandular fever. ”Martin's story is a story of hope and medicatiopn has helped him to recover a good deal of his health. He is seen playing basketball with a friend, although he can only play for 5 miinutes before he must rest, it is huge progress. He has been living with ME/CFS since 2017. After 10 months, at the age of 24, he became almost completely bedridden - more than one visit to the toilet a day in a wheelchair was not possible. Martin was in this condition for four years. “I became ill in my prime. But I take it as it comes,” he says. Today, after medical treatments that have worked miracles for him, Martin is playing basketball again, driving and taking care of a move himself as well as looking for a part-time job. Why is he doing so much better? At first, things didn't look good for Martin: He had to move in with his mother. But she urged him to pull himself together and finally be more active again. Even doctors don't believe Martin. He was told he is faking it, that he is just mentally distressed and needs to pull himself together. Martin decides to break off contact with his mother - and moves into an assisted living community. The majority of the people there are living with psychological issues but it is what the government health services are prepared to offer. There are no alternatives that specialized in ME/CFS. The staff there were there for him 24 hours a day. They accept his limitations, help him with his personal hygiene and bring him food to bed. Every day is hard. Every day, Martin decides to carry on regardless. “I always hoped that there was another medication that I hadn't tried yet,” he says. At some point, this hope became a reality. When Martin started taking low doses of aripiprazole (LDA) and naltrexone (LDN), things started to look up. Rebuilding a life that you have los
AUSTRIA, AUGUST 2024: Martin Privec is 30 years old and is from Upper Austria. Martin has been ill since 2017 after an Epstein-Barr infection “Pfeiffer's glandular fever. ”Martin's story is a story of hope. He is seen moving into his new accommodations with the help of his father, something that would have been unimaginable a year ago before Martin was able to recover sufficiently with medication. He has been living with ME/CFS since 2017. After 10 months, at the age of 24, he became almost completely bedridden - more than one visit to the toilet a day in a wheelchair was not possible. Martin was in this condition for four years. “I became ill in my prime. But I take it as it comes,” he says. Today, after medical treatments that have worked miracles for him, Martin is playing basketball again, driving and taking care of a move himself as well as looking for a part-time job. Why is he doing so much better? At first, things didn't look good for Martin: He had to move in with his mother. But she urged him to pull himself together and finally be more active again. Even doctors don't believe Martin. He was told he is faking it, that he is just mentally distressed and needs to pull himself together. Martin decides to break off contact with his mother - and moves into an assisted living community. The majority of the people there are living with psychological issues but it is what the government health services are prepared to offer. There are no alternatives that specialized in ME/CFS. The staff there were there for him 24 hours a day. They accept his limitations, help him with his personal hygiene and bring him food to bed. Every day is hard. Every day, Martin decides to carry on regardless. “I always hoped that there was another medication that I hadn't tried yet,” he says. At some point, this hope became a reality. When Martin started taking low doses of aripiprazole (LDA) and naltrexone (LDN), things started to look up. Rebuilding a life that you have lo
AUSTRIA, AUGUST 2024: Martin Privec is 30 years old and from Upper Austria. Martin has been ill with ME/CFS since 2017 after an Epstein-Barr infection. Here he is seen looking at himself in the mirror of his new, more independent accommodation, a huge step forward from where he was. Martin's story is a story of hope. After 10 months, at the age of 24, he became almost completely bedridden - more than one visit to the toilet a day in a wheelchair was not possible. Martin was in this condition for four years. Today, after medical treatments that have worked miracles for him, Martin is playing basketball again, driving and taking care of a move to a more independent apartment himself as well as looking for a part-time job. Martin had a tough history with ME/CFS. He had to move in with his mother. But she urged him to pull himself together and be more active again. Neither his mother nor his doctors believed Martin. He was told he is faking it, that he wa just mentally distressed and needs to pull himself together. Martin decides to break off contact with his mother - and moves into an assisted living community. The majority of the people there are living with psychological issues but it is all the government health services were prepared to offer. There are no alternative assisted living accommodations that specialized in ME/CFS. “I always hoped that there was another medication that I hadn't tried yet,” he says. Martin started taking low doses of aripiprazole (LDA) and naltrexone (LDN), his health began to improve. In order to move on however, Martin had to have a diagnoses of psychological illness cancelled that he never had. The Pension Insurance Institution (PVA) had granted him an occupational disability pension on the basis of a supposed mental illness. But ME/CFS is a neuroimmunology multisystem disease - in other words, it is physical. Martin wants to be declared fit for work again by the PVA so that he can look for a job. . He would like to work in t



















































AUSTRIA, AUGUST 2024: Mila's mother Sabine uses handsignals to communicate to her daughter so that she keeps the stimulus her daughter experieinces to a minimum. This is all that Mila can handle, no light, no sounds, nothing that could worsen her condition. Mila Hermisson is 21 years old and has been severely ill since 2018 due to an Influenza-Infection. She lives in a nightmare she can't wake up from. Mila is seriously ill with ME/CFS. She has been lying motionless in a dark room for almost four years - even light leads to sensory overload and overexertion. Her parents, Joachim and Sabine, have been caring for her for almost four years. They feed her liquid food in sippy cups. They wash her in bed. They lift her onto a night chair to relieve herself. For one minute. Because Mila can't sit upright for longer than that. A racing heart, dizziness, barely clear thoughts, pain and an unimaginable lack of strength accompany her every day. Mila can no longer speak . “But the worst thing is that she can no longer stand it when others speak,” says her mother Sabine Hermisson. With ME/CFS, every effort is dangerous, even cognitive ones. Every stimulus that has to be processed, every movement, can overload her and push her even further into the disease. On good days, Mila can cope with individual words. She communicates how many with her fingers. Sometimes one word, never more than three - usually not a single one. One word more than agreed - even that would be crossing the line with unclear consequences. Mila and her parents therefore usually use hand signals that they have worked out together. A tap on the mattress when it gets too much. Putting their fingertips together when Mila needs medication. “You can lose your life without dying,” Mila's doctor is quoted as saying in a Spiegel article. “That sums it up,” says Mila's father Joachim Hermisson. Mila has been living with ME/CFS since she was 15. Now 21, Mila used to play the cello in the living room while he
AUSTRIA, AUGUST 2024: Mila's mother Sabine lifts her severely ill daughter off the bed to use a commode. Mila's parents keep the stimulus she experieinces to a minimum. Any stimulus affects Mila, so no light, no sounds, nothing that could worsen her condition. Mila Hermisson is 21 years old and has been severely ill with ME/CFS since 2018.. She has been lying motionless in a dark room for almost four years. Her parents, Joachim and Sabine, have been caring for her for almost four years. They feed her liquid food in sippy cups. They wash her in bed. They lift her onto a night chair to relieve herself. For one minute. Because Mila can't sit upright for longer than that. A racing heart, dizziness, barely clear thoughts, pain and an unimaginable lack of strength accompany her every day. Mila can no longer speak . “But the worst thing is that she can no longer stand it when others speak,” says her mother Sabine Hermisson. On good days, Mila can cope with individual words. She communicates how many with her fingers. Sometimes one word, never more than three - usually not a single one. Mila and her parents therefore usually use hand signals that they have worked out together. A tap on the mattress when it gets too much. Putting their fingertips together when Mila needs medication. If Mila urgently needed a medical intervention such as an operation, there wouldn't be a hospital or outpatient clinic in the whole of Austria to help her. Not a single contact point specializes in ME/CFS and has created conditions in which severely affected patients can be treated. Neither nursing nor palliative care services have agreed to care for Mila - they are not geared towards cases like hers despite Austria being a first world wealthy country.
AUSTRIA, AUGUST 2024: Mila's father Joachim gives his severely ill daughter food and water in a dark room while using only a tiny green light. He puts moisturiiser on her lips to prevent them from cracking. Mila's parents keep the stimulus she experieinces to a minimum. Any stimulus affects Mila, so no light, no sounds, nothing that could worsen her condition. Mila Hermisson is 21 years old and has been severely ill with ME/CFS since 2018 due to an Influenza-Infection. She has been lying motionless in a dark room for almost four years. Her parents, Joachim and Sabine, have been caring for her for almost four years. They feed her liquid food in sippy cups. They wash her in bed. They lift her onto a night chair to relieve herself. For one minute. Because Mila can't sit upright for longer than that. A racing heart, dizziness, barely clear thoughts, pain and an unimaginable lack of strength accompany her every day. Mila can no longer speak . “But the worst thing is that she can no longer stand it when others speak,” says her mother Sabine Hermisson. On good days, Mila can cope with individual words. She communicates how many with her fingers. Sometimes one word, never more than three - usually not a single one. Mila and her parents therefore usually use hand signals that they have worked out together. A tap on the mattress when it gets too much. Putting their fingertips together when Mila needs medication. If Mila urgently needed a medical intervention such as an operation, there wouldn't be a hospital or outpatient clinic in the whole of Austria to help her. Not a single contact point specializes in ME/CFS and has created conditions in which severely affected patients can be treated. Neither nursing nor palliative care services have agreed to care for Mila - they are not geared towards cases like hers despite Austria being a first world wealthy country.
AUSTRIA, AUGUST 2024: Ella Hermisson holds a book from the last time she and her sister Mila were healthy and together on a trip to the US. That was in 2016. Both sisters became severely ill shortly after that and while Ella has recovered a good deal, Mila remains severely ill and completely dependent on her parents and Ella. Ella was recently studying Medicine but had to stop as she was just not strong enough. She has recently resumed her studies.
AUSTRIA, AUGUST 2024: A portrait of Joachim Hermisson, traumatized by his daughter Mila's illness. Mila Hermisson is 21 years old and has been severely ill since 2018 due to an Influenza-Infection. She lives in a nightmare she can't wake up from. Mila is seriously ill with ME/CFS. She has been lying motionless in a dark room for almost four years - even light leads to sensory overload and overexertion. Her parents, Joachim and Sabine, have been caring for her for almost four years. They feed her liquid food in sippy cups. They wash her in bed. They lift her onto a night chair to relieve herself. For one minute. Because Mila can't sit upright for longer than that. A racing heart, dizziness, barely clear thoughts, pain and an unimaginable lack of strength accompany her every day. Mila can no longer speak . “But the worst thing is that she can no longer stand it when others speak,” says her mother Sabine Hermisson. With ME/CFS, every effort is dangerous, even cognitive ones. Every stimulus that has to be processed, every movement, can overload her and push her even further into the disease. On good days, Mila can cope with individual words. She communicates how many with her fingers. Sometimes one word, never more than three - usually not a single one. One word more than agreed - even that would be crossing the line with unclear consequences. Mila and her parents therefore usually use hand signals that they have worked out together. A tap on the mattress when it gets too much. Putting their fingertips together when Mila needs medication. “You can lose your life without dying,” Mila's doctor is quoted as saying in a Spiegel article. “That sums it up,” says Mila's father Joachim Hermisson. Mila has been living with ME/CFS since she was 15. Now 21, Mila used to play the cello in the living room while her mother cooked. She was a diligent student. She was committed to climate protection. Today, all that feels like a different life. Today, Mila's life is a medic
AUSTRIA, AUGUST 2024: Sabine Hermisson weeps quietly after visitng her severely ill daughter Mila in her darkened bedroom. Mila can no longer tolerate voices so they maintain a silent years long vigil over their child. Mila Hermisson is 21 years old and has been severely ill since 2018 due to an Influenza-Infection. She lives in a nightmare she can't wake up from. Mila is seriously ill with ME/CFS. She has been lying motionless in a dark room for almost four years - even light leads to sensory overload and overexertion. Her parents, Joachim and Sabine, have been caring for her for almost four years. They feed her liquid food in sippy cups. They wash her in bed. They lift her onto a night chair to relieve herself. For one minute. Because Mila can't sit upright for longer than that. A racing heart, dizziness, barely clear thoughts, pain and an unimaginable lack of strength accompany her every day. Mila can no longer speak . “But the worst thing is that she can no longer stand it when others speak,” says her mother Sabine Hermisson. With ME/CFS, every effort is dangerous, even cognitive ones. Every stimulus that has to be processed, every movement, can overload her and push her even further into the disease. On good days, Mila can cope with individual words. She communicates how many with her fingers. Sometimes one word, never more than three - usually not a single one. One word more than agreed - even that would be crossing the line with unclear consequences. Mila and her parents therefore usually use hand signals that they have worked out together. A tap on the mattress when it gets too much. Putting their fingertips together when Mila needs medication. “You can lose your life without dying,” Mila's doctor is quoted as saying in a Spiegel article. “That sums it up,” says Mila's father Joachim Hermisson. Mila has been living with ME/CFS since she was 15. Now 21, Mila used to play the cello in the living room while her mother cooked. She was a diligent stud
AUSTRIA, AUGUST 2024: Madeleine Martos,35, has had ME/CFS since 2017, since 2018 she is housebound. Madeleine used to be a very active TV- and radio journalist but had to move to a small village because the city noise became too much. Madeleine’s husband Daniel, also a journalist, changed his career to psychotherapy to spend as much time as he can with her. Every day Madeleine tries to walk the dogs in the morning. She must stop often and sometimes even crawl to make it. Her husband Daniel takes care of most of the household chores as well as the garden and Madeleine feels guilty about this. Madeleine spends her days listening to podcasts. Reading is too exhausting, she says, even short emails take up a lot of energy. An electric wheelchair would help Madeleine immensely, but her health insurance denied it, “They do not understand. They said I am not paralyzed so I don't need it” Every ten days Madeleine takes immunoglobulins and sets up the infusions herself as the doctor visits are too difficult. She says these infusions are what keep her going. Before going to sleep every night, the two ask each other where they will meet in their dreams, they always add in a place where Madeleine is healthy.
AUSTRIA, AUGUST 2024: Madeleine Martos,35, has had ME/CFS since 2017, since 2018 she is housebound. Madeleine used to be a very active TV- and radio journalist but had to move to a small village because the city noise became too much. Madeleine’s husband Daniel, also a journalist, changed his career to psychotherapy to spend as much time as he can with her. Every day Madeleine tries to walk the dogs in the morning. She must stop often and sometimes even crawl to make it. Her husband Daniel takes care of most of the household chores as well as the garden and Madeleine feels guilty about this. Madeleine spends her days listening to podcasts. Reading is too exhausting, she says, even short emails take up a lot of energy. An electric wheelchair would help Madeleine immensely, but her health insurance denied it, “They do not understand. They said I am not paralyzed so I don't need it” Every ten days Madeleine takes immunoglobulins and sets up the infusions herself as the doctor visits are too difficult. She says these infusions are what keep her going. Before going to sleep every night, the two ask each other where they will meet in their dreams, they always add in a place where Madeleine is healthy.
AUSTRIA, AUGUST 2024: Madeleine Martos,35, has had ME/CFS since 2017, since 2018 she is housebound. She is seen crying while resting while climbing the stairs in her home, she cannot usually climb them in one effort. Madeleine used to be a very active TV- and radio journalist but had to move to a small village because the city noise became too much. Madeleine’s husband Daniel, also a journalist, changed his career to psychotherapy to spend as much time as he can with her. Every day Madeleine tries to walk the dogs in the morning. She must stop often and sometimes even crawl to make it. Her husband Daniel takes care of most of the household chores as well as the garden and Madeleine feels guilty about this. Madeleine spends her days listening to podcasts. Reading is too exhausting, she says, even short emails take up a lot of energy. An electric wheelchair would help Madeleine immensely, but her health insurance denied it, “They do not understand. They said I am not paralyzed so I don't need it” Every ten days Madeleine takes immunoglobulins and sets up the infusions herself as the doctor visits are too difficult. She says these infusions are what keep her going. Before going to sleep every night, the two ask each other where they will meet in their dreams, they always add in a place where Madeleine is healthy.
AUSTRIA, AUGUST 2024: Madeleine Martos lies on the floor in the excercise room while her husband Daniel works out. Maddy used to be very sporty but due to her severe illness she can only watch these days. Desptie that, Maddy and Daniel manage to laugh about it on her better days. Madeleine Martos is 35 years old, she has had ME/CFS since 2017, and since 2018 she is housebound. She is also living with a diagnosis of SFN, MCAS and POTS. Madeleine lived in Vienna but had to move to a small village with 300 people because the noise in the city became too much for her. Madeleine used to be a TV- and radio journalist, she now lives with her husband Daniel and their two dogs. He has changed his career to psychotherapy and tries to spend as much time as he can with Madeleine. Madeleine is living in a terraced house they rent. It is pastoral and quiet but it is a two story house and climbing the stairs can sometimes take Maddy twenty minutes and rob her of limited energy for the rest of the day.When she wakes up, she takes her pills, she then needs a few hours until she is able to start her day because the pain is too much to handle, before the pills kick in.Every day Madeleine tries to walk the dogs in the morning for half an hour, once she is ableto. Many times she has to stop and even crawl rather than walking. She does not go far, but the walk gives her day structure. That is important to her.Afterwards she has to sit or lay on the couch for at least one hour. On some days she staysthere the whole day and then even having a shower is a success. Her husband Daniel takes care of most of the household chores as well as the garden and Madeleines feels guilty about this. He also works a lot as a psychotherapist in the clinic nearby where he tries to also support people with ME/CFS there. Madeleine tries to stay on the couch instead of the bed – she knows that sitting is better so her blood circulation does not go down too much. That makes getting up even harder. Man
AUSTRIA, AUGUST 2024: Madeleine Martos,35, has had ME/CFS since 2017, since 2018 she is housebound. Madeleine used to be a very active TV- and radio journalist but had to move to a small village because the city noise became too much. She nows spends most of her day resting, listening to podcasts. Madeleine’s husband Daniel, also a journalist, changed his career to psychotherapy to spend as much time as he can with her. Every day Madeleine tries to walk the dogs in the morning. She must stop often and sometimes even crawl to make it. Her husband Daniel takes care of most of the household chores as well as the garden and Madeleine feels guilty about this. Madeleine spends her days listening to podcasts. Reading is too exhausting, she says, even short emails take up a lot of energy. An electric wheelchair would help Madeleine immensely, but her health insurance denied it, “They do not understand. They said I am not paralyzed so I don't need it” Every ten days Madeleine takes immunoglobulins and sets up the infusions herself as the doctor visits are too difficult. She says these infusions are what keep her going. Before going to sleep every night, the two ask each other where they will meet in their dreams, they always add in a place where Madeleine is healthy.
AUSTRIA, AUGUST 2024: Madeleine Martos,35, has had ME/CFS since 2017, since 2018 she is housebound. She has a great deal of pain and she says floating in the small inflatable pool in her backyard helps with that, releiving her body temporarily. Madeleine used to be a very active TV- and radio journalist but had to move to a small village because the city noise became too much. Madeleine’s husband Daniel, also a journalist, changed his career to psychotherapy to spend as much time as he can with her. Every day Madeleine tries to walk the dogs in the morning. She must stop often and sometimes even crawl to make it. Her husband Daniel takes care of most of the household chores as well as the garden and Madeleine feels guilty about this. Madeleine spends her days listening to podcasts. Reading is too exhausting, she says, even short emails take up a lot of energy. An electric wheelchair would help Madeleine immensely, but her health insurance denied it, “They do not understand. They said I am not paralyzed so I don't need it” Every ten days Madeleine takes immunoglobulins and sets up the infusions herself as the doctor visits are too difficult. She says these infusions are what keep her going. Before going to sleep every night, the two ask each other where they will meet in their dreams, they always add in a place where Madeleine is healthy.
AUSTRIA, AUGUST 2024: Madeleine Martos,35, has had ME/CFS since 2017, since 2018 she is housebound. Madeleine used to be a very active TV- and radio journalist but had to move to a small village because the city noise became too much. Madeleine’s husband Daniel, also a journalist, changed his career to psychotherapy to spend as much time as he can with her. Every day Madeleine tries to walk the dogs in the morning. She must stop often and sometimes even crawl to make it. Her husband Daniel takes care of most of the household chores as well as the garden and Madeleine feels guilty about this. Madeleine spends her days listening to podcasts. Reading is too exhausting, she says, even short emails take up a lot of energy. An electric wheelchair would help Madeleine immensely, but her health insurance denied it, “They do not understand. They said I am not paralyzed so I don't need it” Every ten days Madeleine takes immunoglobulins and sets up the infusions herself as the doctor visits are too difficult. She says these infusions are what keep her going. Before going to sleep every night, the two ask each other where they will meet in their dreams, they always add in a place where Madeleine is healthy.
AUSTRIA, AUGUST 2024: Madeleine Martos,35, has had ME/CFS since 2017, since 2018 she is housebound. She is seen giving herself a self-administered infusion, she says these are vital to keep her going and she has given herself hundereds of these. Madeleine used to be a very active TV- and radio journalist but had to move to a small village because the city noise became too much. Madeleine’s husband Daniel, also a journalist, changed his career to psychotherapy to spend as much time as he can with her. Every day Madeleine tries to walk the dogs in the morning. She must stop often and sometimes even crawl to make it. Her husband Daniel takes care of most of the household chores as well as the garden and Madeleine feels guilty about this. Madeleine spends her days listening to podcasts. Reading is too exhausting, she says, even short emails take up a lot of energy. An electric wheelchair would help Madeleine immensely, but her health insurance denied it, “They do not understand. They said I am not paralyzed so I don't need it” Every ten days Madeleine takes immunoglobulins and sets up the infusions herself as the doctor visits are too difficult. She says these infusions are what keep her going. Before going to sleep every night, the two ask each other where they will meet in their dreams, they always add in a place where Madeleine is healthy.
AUSTRIA, AUGUST 2024: Madeleine Martos is 35 years old, she has had ME/CFS since 2017, and since 2018 she is housebound. She is also living with a diagnosis of SFN, MCAS and POTS. Madeleine lived in Vienna but had to move to a small village with 300 people because the noise in the city became too much for her. Madeleine used to be a TV- and radio journalist, she now lives with her husband Daniel and their two dogs. He has changed his career to psychotherapy and tries to spend as much time as he can with Madeleine. Madeleine is living in a terraced house they rent. It is pastoral and quiet but it is a two story house and climbing the stairs can sometimes take Maddy twenty minutes and rob her of limited energy for the rest of the day.When she wakes up, she takes her pills, she then needs a few hours until she is able to start her day because the pain is too much to handle, before the pills kick in.Every day Madeleine tries to walk the dogs in the morning for half an hour, once she is ableto. Many times she has to stop and even crawl rather than walking. She does not go far, but the walk gives her day structure. That is important to her.Afterwards she has to sit or lay on the couch for at least one hour. On some days she staysthere the whole day and then even having a shower is a success. Her husband Daniel takes care of most of the household chores as well as the garden and Madeleines feels guilty about this. He also works a lot as a psychotherapist in the clinic nearby where he tries to also support people with ME/CFS there. Madeleine tries to stay on the couch instead of the bed – she knows that sitting is better so her blood circulation does not go down too much. That makes getting up even harder. Manytimes she still has to lay in bed, because even sitting is too much. Madeleine spends her days listening to podcasts (“They keep me sane, because I am aloneall of the time”). Sometimes she paints or knits. She can’t really read anymore. Even short email
AUSTRIA, AUGUST 2024: Carmen Rinnhofer is 29 years old and has been severely ill with ME/CFS since 2022 after a corona infection. CArmen has not left the house in over two years. She communicates with the outside world via her phone and she tries to be active on twitter X. Carmen is vocal online on how ME/CFS has a gender bias towards women and she feels the medical community has not responded appropriately. Carmen loved sport, traveling and learning. Carmen had just completed her master’s degree in transcultural communication when she fell ill. She speaks four languages. She lived in France twice and was a regular jogger. She had only just discovered road cycling when she contracted coronavirus., despite being vaccinated three times. Carmen usually lies in the dark alone. If she spends ten minutes daily with her mother, Erika Siebenbrunner, they consider that a success. On normal days, Erika has to leave the room after five minutes, even if they don't talk to each other. On good days, which are rare, Carmen can take a bath with the help of her mother. If possible, she writes to her friends or talks about her condition on social media. Both are very difficult. Carmen has a deep awareness that the majority of ME/CFS sufferers are young and female. “The decades of neglect and the persistent lack of care and recognition can be attributed to this fact, among other things,” Carmen once wrote on the X platform.
AUSTRIA, AUGUST 2024: Carmen Rinnhofer is 29 years old and has been severely ill with ME/CFS since 2022 after a corona infection. Sport, traveling, learning. That's what Carmen Rinnhofer loved. She has lost all three of these things - and much more besides. Carmen had just completed her master’s degree in transcultural communication when she fell ill. She speaks four languages. She lived in France twice and was a regular jogger. She had only just discovered road cycling when she contracted coronavirus. Carmen had already been vaccinated three times. Nevertheless, she is now seriously ill with ME/CFS. She hasn't left the house for almost two years. Carmen usually lies in the dark, all alone. If she spends ten minutes with her mother, Erika Siebenbrunner, that is already a success. On normal days, Erika has to leave the room after five minutes, even if they don't talk to each other.On good days, which are rare, Carmen can take a bath with the help of her mother. If possible, she writes to her friends or talks about her condition on social media. Both are very difficult. Carmen has a deep awareness that the majority of ME/CFS sufferers are young and female. “The decades of neglect and the persistent lack of care and recognition can be attributed to this fact, among other things,” Carmen once wrote on the X platform (formerly Twitter). She is a political person - and a staunch feminist. The thesis from her X post, that supposed “women's diseases” are less well researched and treated, has long been proven. Carmen also receives no financial support from the state. She and her mother know how ruthless the application process often is - with almost no chance of home visits by doctors carrying out assessments. “I can't do that to her unless I really have to,” says Carmen's mother Erika. The daughter's isolation also leads to the mother's isolation. “My life is all about work, shopping and looking after Carmen,” says Erika. She has to be at home if her d
AUSTRIA, AUGUST 2024: Carmen Rinnhofer is 29 years old and has been severely ill with ME/CFS since 2022 after a Covid infection, she has not left her house in over two years. When she goes to the bathroom she has to save her strength for only one or two visits a day. Carmen communicates with the outside world via her phone and she tries to be active on twitter X. Carmen is vocal online on how ME/CFS has a gender bias towards women and she feels the medical community has not responded appropriately. Carmen loved sport, traveling and learning. Carmen had just completed her master’s degree in transcultural communication when she fell ill. She speaks four languages. She had only just discovered road cycling when she contracted coronavirus., despite being vaccinated three times. Carmen usually lies in the dark alone. If she spends ten minutes daily with her mother, Erika Siebenbrunner, they consider that a success. On normal days, Erika has to leave the room after five minutes, even if they don't talk to each other. On good days, which are rare, Carmen can take a bath with the help of her mother. If possible, she writes to her friends or talks about her condition on social media. Both are very difficult. Carmen has a deep awareness that the majority of ME/CFS sufferers are young and female. “The decades of neglect and the persistent lack of care and recognition can be attributed to this fact, among other things,” Carmen once wrote on the X platform.
AUSTRIA, AUGUST 2024: Carmen Rinnhofer is 29 years old and has been severely ill with ME/CFS since 2022 after a corona infection. She struggles to go to the bathroom and has to sit on the floor while brushing her teeth. Carmen remains determined however and hopes for a medical breakthrough. Sport, traveling, learning. That's what Carmen Rinnhofer loved. She has lost all three of these things - and much more besides. Carmen had just completed her master’s degree in transcultural communication when she fell ill. She speaks four languages. She lived in France twice and was a regular jogger. She had only just discovered road cycling when she contracted coronavirus. Carmen had already been vaccinated three times. Nevertheless, she is now seriously ill with ME/CFS. She hasn't left the house for almost two years. Carmen usually lies in the dark, all alone. If she spends ten minutes with her mother, Erika Siebenbrunner, that is already a success. On normal days, Erika has to leave the room after five minutes, even if they don't talk to each other.On good days, which are rare, Carmen can take a bath with the help of her mother. If possible, she writes to her friends or talks about her condition on social media. Both are very difficult. Carmen has a deep awareness that the majority of ME/CFS sufferers are young and female. “The decades of neglect and the persistent lack of care and recognition can be attributed to this fact, among other things,” Carmen once wrote on the X platform (formerly Twitter). She is a political person - and a staunch feminist. The thesis from her X post, that supposed “women's diseases” are less well researched and treated, has long been proven. Carmen also receives no financial support from the state. She and her mother know how ruthless the application process often is - with almost no chance of home visits by doctors carrying out assessments. “I can't do that to her unless I really have to,” says Carmen's mother Erika. The daught
AUSTRIA, AUGUST 2024: Erika Siebenbrunner's daughter Carmen is severely ill with ME/CFS and since 2022, Erika has devoted her life to her daughters care. Carmen Rinnhofer is 29 years old and has been severely ill with ME/CFS since 2022 after a corona infection. Carmen hasn't left the house for almost two years. Carmen usually lies in the dark, all alone. If she spends ten minutes with her mother, Erika Siebenbrunner, that is already a success. On normal days, Erika has to leave the room after five minutes, even if they don't talk to each other. On good days, which are rare, Carmen can take a bath with the help of her mother.
Austria, August 2024: Kornelia Spahn is a former teacher, and painting is her true passion. She has been ill for over 5 years with ME/CFS but still tries to continue with her painting. On good days, she can sit and paint, on most days she must lie down on the canvas and work very slowly. Kornelia has a great deal of pain and often when she tries to paint, she cries as her body fails her. Her sister Sabine is a doctor, and has been a rock for Kornelia, visiting every day and making sure Kornelia has what she needs. Sabine also gives Kornelia regular infustions, which help and make life more bearable for Kornelia.
Austria, August 2024: Kornelia Spahn is a former teacher, and painting is her true passion. She has been ill for over 5 years with ME/CFS but still tries to continue with her painting. On good days, she can sit and paint, on most days she must lie down on the canvas and work very slowly. Kornelia has a great deal of pain and often when she tries to paint, she cries as her body fails her. Her sister Sabine is a doctor, and has been a rock for Kornelia, visiting every day and making sure Kornelia has what she needs. Sabine also gives Kornelia regular infustions, which help and make life more bearable for Kornelia.
AUSTRIA, AUGUST 2024: Gerhard Strock and his wife Gabrielle are seen at one of their bakeries. They are successful businesspeople who own many bakeries across Austria. They have three adult sons and two of them have been living with ME/CFS for some time. One of them is improving very slowly and takes prescribed meds and does whatever he can to get better. The other has not allowed his parents to see him for over 4 years, he does not take any of the prescribed medicine due to his fear of side effects and he has talked about whether he wants to live or not. He lives in seclusion in a dark room and is very weak. Gerhard and Gabrielle founded the WE/ME foundation in Austria to support people living with ME/CFS and seek to drive medical research and public awareness of this issue. (Photo by Brent Stirton/Getty Images.)
Austria, August 2024: Elisabeth Bacher, 55, cries quielty in her kitchen under a photograph of her 4 children. Elizabeth is severely ill with ME/CFS but she is also the only caregiver for her daughter Lisa, who is 27 years old and has been ill with ME/CFS since 2011 after a swine flu infection. They receive no help from the state and Elisabeth put's her daughter's health ahead of her own at all times but is fearful of what the future may bring.
Austria, August 2024: Elizabeth Bacher,55, helps her daughter Lisa, 27, wake up after a troubled night. She brings cold face clothes to help Lisa cool down. Elizabeth is severely ill with ME/CFS after contracting Covid but she is also the only caregiver for her daughter Lisa, who is 27 years old and has been ill with ME/CFS since 2011 after a swine flu infection. They receive no help from the state and Elisabeth put's her daughter's health ahead of her own at all times but is fearful of what the future may bring.
Austria, August 2024: Lisa Bacher & Elisabeth Bacher spent most of their time in their living room, they are most often too weak to leave the house. Elizabeth is severely ill with ME/CFS after contracting Covid but she is also the only caregiver for her daughter Lisa, who is 27 years old and has been ill with ME/CFS since 2011 after a swine flu infection. They receive no help from the state and Elisabeth put's her daughter's health ahead of her own at all times but is fearful of what the future may bring.
Austria, August 2024: Lisa Bacher & Elisabeth Bacher spent most of their time in their living room, often too weak to leave the house. Lisa is 27 years old is has been ill since 2011 after a swine flu infection Elisabeth is 55 years old and she received a post-Covid diagnosis since 2023, first symptoms since 2011. Neither Lisa Bacher nor her mother Elisabeth Bacher could have imagined this before it happened. Even more unimaginable: that Elisabeth herself would become so ill that Lisa's support would be almost impossible to manage at times. How did this happen? In 2011, mother and daughter were infected with swine flu. Lisa still felt ill weeks later. She was 14 years old at the time. After the infection, Lisa tried to go for a run in the forest. “The next day, I suddenly couldn't walk anymore,” Lisa remembers. She lacked the strength. She had her first crash - a worsening of symptoms after overexertion. Doctors blame the symptoms on Lisa's psyche. A young girl at the beginning of puberty. You're often tired then, they say. It took years before Lisa was finally diagnosed with ME/CFS. A long time during which she got worse and worse. Elisabeth Bacher was also affected by the swine-flu infection. The single mother of four children who previously had two jobs and volunteered at school alongside childcare. After the infection, she feels as if she has aged 30 years. What's more, her eldest daughter suddenly needed a lot more support in her everyday life. At the time, Elisabeth lacked the energy for anything else in addition to her work and caring for Lisa and her siblings. Her doctor now says that it probably all started back then. Volunteering, social contacts and hobbies have to be put on hold. Despite this, Elisabeth was still in a bad way. She quit first one and then her second job. “At some point, it was just about keeping Lisa and me alive,” says Elisabeth. Nevertheless, she told herself at the time that she was just overworked. The years pass and Lisa
Austria, August 2024: Lisa Bacher & Elisabeth Bacher are seen with their rescue dog Lily. Lily is trained to bring Lisa's meds to her and also to alert Lisa if her heart rate drops. Lisa is 27 years old and has been ill since 2011 after a swine flu infection. Elisabeth is 55 years old and she received a post-Covid diagnosis since 2023, Among other things, she is trained to nudge Lisa when her heart rate is too high. Lisa then knows that she needs to sit or lie down. Lili is also a great emotional support. One of Elisabeth and Lisa's biggest worries is that they will no longer be able to look after Lili and that they will have to give up their beloved dog.
Austria, August 2024: Lisa Bacher & Elisabeth Bacher rest in their bed and review ME/CFS awareness campaigns that Lisa has created on her computer. . Lisa is 27 years old and has been ill since 2011 after a swine flu infection Elisabeth is 55 years old and she received a post-Covid diagnosis since 2023, first symptoms since 2011. Neither Lisa Bacher nor her mother Elisabeth Bacher could have imagined this before it happened. Even more unimaginable: that Elisabeth herself would become so ill that Lisa's support would be almost impossible to manage at times. How did this happen? In 2011, mother and daughter were infected with swine flu. Lisa still felt ill weeks later. She was 14 years old at the time. After the infection, Lisa tried to go for a run in the forest. “The next day, I suddenly couldn't walk anymore,” Lisa remembers. She lacked the strength. She had her first crash - a worsening of symptoms after overexertion. Doctors blame the symptoms on Lisa's psyche. A young girl at the beginning of puberty. You're often tired then, they say. It took years before Lisa was finally diagnosed with ME/CFS. A long time during which she got worse and worse. Elisabeth Bacher was also affected by the swine-flu infection. The single mother of four children who previously had two jobs and volunteered at school alongside childcare. After the infection, she feels as if she has aged 30 years. What's more, her eldest daughter suddenly needed a lot more support in her everyday life. At the time, Elisabeth lacked the energy for anything else in addition to her work and caring for Lisa and her siblings. Her doctor now says that it probably all started back then. Volunteering, social contacts and hobbies have to be put on hold. Despite this, Elisabeth was still in a bad way. She quit first one and then her second job. “At some point, it was just about keeping Lisa and me alive,” says Elisabeth. Nevertheless, she told herself at the time that she was just overworked. The year
Austria, August 2024: Lisa Bacher, 27, and her mother Elisabeth Bacher, 55, are seen in their bedroom as Elisabeth dries Lisa's hair. Lisa must wear a blindfold and hearing suppression for this. Lisa has been ill with ME/CFS since 2011 after a swine flu infection. Elisabeth received a post-Covid diagnosis of ME/CFS in 2023, first symptoms since 2020. Elisabeth is Lisa’s only caregiver, despite being severely ill herself. She is the single mother of four children who previously had two jobs and volunteered at school. “At some point, it just became about keeping Lisa and me alive,” says Elisabeth. Lisa says a crash feels, “As if someone has sucked all the energy out of me or pulled the plug,” says Lisa. She wants to continue being active, but her body goes on strike. Sometimes she can't even move her arms. “You feel trapped in your own body. It's particularly bad when you can no longer speak or use your cell phone,” says Lisa. ‘If she had been treated properly earlier, she would be better today,’ says Elisabeth. Lisa can only leave the house if someone can be found to help with the wheelchair transport. Elisabeth was only able to finance Lisa’s wheelchair and the stair lift to the house with the help of neighbors and the local church. Lisa’s assistance dog Lili is trained to nudge Lisa when her heart rate is too high. Lisa then knows that she needs to sit or lie down. Lili is also a great emotional support.
Austria, August 2024: Lisa Bacher is 27 years old and has been ill with ME/CFS since 2011 after a swine flu infection. She was always a very slim girl but the medication she is now using has led to her gaining over 25 kilograms. She is still trying to get used to her new body.
Austria, August 2024: Lisa Bacher & Elisabeth Bacher are seen with Lisa's rescue dog Lily using the wheel chair and chair lift donated to them by their church and neighbors. The Austrian medical authority decided that they did not need these things despite the fact the both Lisa and Elizabeth are severely ill. .Lisa is 27 years old and has been ill with ME/CFS since 2011 after a swine flu infection. Elisabeth is 55 years old and she received a post-Covid diagnosis in 2023.
Austria, August 2024: Lisa Bacher & Elisabeth Bacher attend a dog training session with Lisa's rescue dog Lily. This is designed to teach Lily to be calm around other dogs and new people. This session is the first time Lisa and Elisabeth have been to this forest in over 2 years, despite the fact that it is only five minutes from their home. Lisa is 27 years old and has been ill with ME/CFS since 2011 after a swine flu infection. Elisabeth is 55 years old and she received a post-Covid diagnosis of ME/CFS in 2023. They have to practise energy rationing for the most important things.
Austria, August 2024: Lisa Bacher & Elisabeth Bacher attend a dog training session with Lisa's rescue dog Lily. This is designed to teach Lily to be calm around other dogs and new people. This session is the first time Lisa and Elisabeth have been to this forest in over 2 years, despite the fact that it is only five minutes from their home. Lisa is 27 years old and has been ill with ME/CFS since 2011 after a swine flu infection. Elisabeth is 55 years old and she received a post-Covid diagnosis of ME/CFS in 2023. They have to practise energy rationing for the most important things. Elisabeth is Lisa's only caregiver, despite her own severe ME/CFS diagnosis.
Austria, August 2024: Elisabeth Bacher stand exhausted by a window, she is the sole caregiver for her daughter Lisa. Lisa is 27 years old and has been ill with ME/CFS since 2011 after a swine flu infection Elisabeth is 55 years old and she received a post-Covid diagnosis since 2023, first symptoms since 2011. Neither Lisa Bacher nor her mother Elisabeth Bacher could have imagined this before it happened. Even more unimaginable: that Elisabeth herself would become so ill that Lisa's support would be almost impossible to manage at times. How did this happen? In 2011, mother and daughter were infected with swine flu. Lisa still felt ill weeks later. She was 14 years old at the time. After the infection, Lisa tried to go for a run in the forest. “The next day, I suddenly couldn't walk anymore,” Lisa remembers. She lacked the strength. She had her first crash - a worsening of symptoms after overexertion. Doctors blame the symptoms on Lisa's psyche. A young girl at the beginning of puberty. You're often tired then, they say. It took years before Lisa was finally diagnosed with ME/CFS. A long time during which she got worse and worse. Elisabeth Bacher was also affected by the swine-flu infection. The single mother of four children who previously had two jobs and volunteered at school alongside childcare. After the infection, she feels as if she has aged 30 years. What's more, her eldest daughter suddenly needed a lot more support in her everyday life. At the time, Elisabeth lacked the energy for anything else in addition to her work and caring for Lisa and her siblings. Her doctor now says that it probably all started back then. Volunteering, social contacts and hobbies have to be put on hold. Despite this, Elisabeth was still in a bad way. She quit first one and then her second job. “At some point, it was just about keeping Lisa and me alive,” says Elisabeth. Nevertheless, she told herself at the time that she was just overworked. The years pass and Lisa and h
AUSTRIA, August 2024: Karin is the devoted wife of Hannes, who has severe ME/CFS since 2021. She is seen taking a little time for herself after she has helped Hannes back into bed. Her husband used to be a successful operations manager - until he contracted coronavirus. One week after the infection, he could only stand three-minute conversations until he collapsed. Four months later, ME/CFS was confirmed. He can only walk a few meters and can only stand for a minute at most. Karin helps him to spend time in the garden when he feels strong enough. “I love him, of course I do these things for him. It's hard, but it's even harder for him,” says Karin.
AUSTRIA, AUSUT 2024: Hannes is helped by his wife Karin into his wheelcharir along with his sunglasses and hearing protection. Karin is devoted to her husband and is always trying to help him as he struggles with ME/CFS. Hannes is 52 years old and has been severely ill with ME/CFS since 2021 after a Covid infection. Hannes D. used to be a successful operations manager - until he contracted coronavirus at the end of 2021. One week after the infection, he could only stand three-minute conversations until he collapsed. After that, he needs a half-hour break. Four months later, ME/CFS is suspected for the first time, which is later confirmed. Hannes has had to learn to respect his limits. If he doesn't every overload leads to a crash, with him lying in a dark room for days on end with severe symptoms. “Every day that is better than 22 hours of lying down is a positive day,” says Hannes. He has not lost his positive attitude. Hannes' condition improved a little by the end of 2022. Then he is infected with coronavirus again. Since then, he has only been able to leave the house in a wheelchair for very short periods. Living with ME/CFS also means constant caution so that all his progress is not lost in one severe relapse. To this day, Hannes can only walk a few meters and can only stand for a minute at most. His wife Karin cares for him. “I love him, of course I do that. It's hard, but it's even harder for him,” she says with tears in her eyes. The tenderness in their relationship has remained. They still make short trips to the garden together - these are the shared experiences that are still possible. “I hope that in a few years there will be a better medication that helps,” says Hannes. At least his previous rehab stays have helped him. The local doctors understand that ME/CFS needs adapted therapies. They treat him properly and show him strategies on how to manage his limited energy. In view of the many cases in which people with ME/CFS are made even sic
AUSTRIA, AUGUST 2024: Hannes used to be a successful operations manager - until he contracted coronavirus at the end of 2021. One week after the infection, he could only stand three-minute conversations until he collapsed. Four months later, ME/CFS was confirmed. Hannes again contracted Covid in 2022 and since then he has only been able to leave the house in a wheelchair for very short periods. Living with ME/CFS means constant caution so that all his progress is not lost in one severe relapse. Hannes often spends 22 hours a day bedridden. He can only walk a few meters and can only stand for a minute at most. His devoted wife Karin helps him to spend time in the garden when he feels strong enough. “I love him, of course I do these things for him. It's hard, but it's even harder for him,” says Karin.
AUSTRIA, AUSUT 2024: Hannes is 52 years old and has been severely ill with ME/CFS since 2021 after a Covid infection. He is seen with his devoted wife Karin as they go into the garden and spend time outdoors for a while. They have a very strong relationship and this helps them through the very tough reality of Hannes's illness. Hannes D. used to be a successful operations manager - until he contracted coronavirus at the end of 2021. One week after the infection, he could only stand three-minute conversations until he collapsed. After that, he needs a half-hour break. Four months later, ME/CFS is suspected for the first time, which is later confirmed. Hannes has had to learn to respect his limits. If he doesn't every overload leads to a crash, with him lying in a dark room for days on end with severe symptoms. “Every day that is better than 22 hours of lying down is a positive day,” says Hannes. He has not lost his positive attitude. Hannes' condition improved a little by the end of 2022. Then he is infected with coronavirus again. Since then, he has only been able to leave the house in a wheelchair for very short periods. Living with ME/CFS also means constant caution so that all his progress is not lost in one severe relapse. To this day, Hannes can only walk a few meters and can only stand for a minute at most. His wife Karin cares for him. “I love him, of course I do that. It's hard, but it's even harder for him,” she says with tears in her eyes. The tenderness in their relationship has remained. They still make short trips to the garden together - these are the shared experiences that are still possible. “I hope that in a few years there will be a better medication that helps,” says Hannes. At least his previous rehab stays have helped him. The local doctors understand that ME/CFS needs adapted therapies. They treat him properly and show him strategies on how to manage his limited energy. In view of the many cases in which people with ME/CFS are
AUSTRIA, AUGUST 2024: Hannes used to be a successful operations manager - until he contracted coronavirus at the end of 2021. One week after the infection, he could only stand three-minute conversations until he collapsed. Four months later, ME/CFS was confirmed. Hannes again contracted Covid in 2022 and since then he has only been able to leave the house in a wheelchair for very short periods. Living with ME/CFS means constant caution so that all his progress is not lost in one severe relapse. Hannes often spends 22 hours a day bedridden. He can only walk a few meters and can only stand for a minute at most. His devoted wife Karin helps him to spend time in the garden when he feels strong enough. “I love him, of course I do these things for him. It's hard, but it's even harder for him,” says Karin.
AUSTRIA, AUSUT 2024: Hannes is 52 years old and has been severely ill with ME/CFS since 2021 after a Covid infection. He is seen with his daughter Simone who is to be married in two weeks. Hannes is planning to atttend the ceremony using a wheelchair and a bed inside the church. This is likely to worsen his condition but he is determined to do it. Hannes D. used to be a successful operations manager - until he contracted coronavirus at the end of 2021. One week after the infection, he could only stand three-minute conversations until he collapsed. After that, he needs a half-hour break. Four months later, ME/CFS is suspected for the first time, which is later confirmed. Hannes has had to learn to respect his limits. If he doesn't every overload leads to a crash, with him lying in a dark room for days on end with severe symptoms. “Every day that is better than 22 hours of lying down is a positive day,” says Hannes. He has not lost his positive attitude. Hannes' condition improved a little by the end of 2022. Then he is infected with coronavirus again. Since then, he has only been able to leave the house in a wheelchair for very short periods. Living with ME/CFS also means constant caution so that all his progress is not lost in one severe relapse. To this day, Hannes can only walk a few meters and can only stand for a minute at most. His wife Karin cares for him. “I love him, of course I do that. It's hard, but it's even harder for him,” she says with tears in her eyes. The tenderness in their relationship has remained. They still make short trips to the garden together - these are the shared experiences that are still possible. “I hope that in a few years there will be a better medication that helps,” says Hannes. At least his previous rehab stays have helped him. The local doctors understand that ME/CFS needs adapted therapies. They treat him properly and show him strategies on how to manage his limited energy. In view of the many cases in which peop
AUSTRIA, VIENNA, AUGUST 2024: Herbert Anreitter showers his wife Yvonne and gently washes her hair. He is her devoted caregiver. Yvonne Anreitter has been severely ill with ME/CFS since 2020 after a Covid 19 infection. The medical authorities in Austria denied care to Yvonne when she sought help. Yvonne Arreitner has been battling with the Austrain pension insurance organization for over three years for rehabilitation and care benefits. ‘This process is so draining,’ says Yvonne. With her diagnosis, this has driven her further into the disease. When Yvonne tried to stand during the assessment of her care needs, her whole body began to tremble. And yet the assessor, who did not certify her as needing care, assumed that she was faking it - after all, her wheelchair looked unused. Yvonne says it looks unused because she can so rarely go outside.
Vienna, Austria, August 2024: Yvonne Anreitter contracted coronavirus at the end of 2020. After she recovered, severe headaches and muscle aches remained – she felt exhausted all the time. Her Long Covid diagnosis eventually became ME/CFS, POTS and MCAS. Yvonne, who worked in refugee aid before her illness, had to give up her job. Her world becomes smaller and smaller until she was confined to her bedroom. Yvonne needs the support of her husband, Herbert Anreitter, for all things. Herbert does the shopping, he cleans, he cooks, he drives her in her wheelchair to appointments to fight for disability aid that the government has continually denied her. Yvonne gets up with Herbert at five in the morning so that he can make breakfast for them before he leaves for work. Yvonne then goes back to sleep. When Herbert returns, he helps his wife get dressed. Somehow, the two still manage to maintain a loving and equal marriage. ‘We don't let anything get us down,’ says Herbert, “Yvonne is not ready to give up. “
AUSTRIA, AUSUT 2024: Herbert Anreitter places a morphine patch on his wife Yvonne's back to help her with pain management. Yvonne Anreitter is 50 years old and she has been severely ill with ME/CFS since 2020 after a Covid infection. The medical authorities in Austria were brutal with Yvonne when she sought out help for her disability. “Zero hours. That's how much care Yvonne Anreitter needs,” according to a so-called medical expert responsible for setting out aid. “Shopping, cleaning, cooking, dressing - she can do all of this without help. The same applies to work.” These are ludicrous and cruel statements. Yvonne Arreitner has been battling with the relevant pension insurance organisation (PVA) for over three years for rehabilitation and care benefits. Three years in which she has been shunted back and forth between sick leave and the AMS. Sometimes she has to send new reports to the authorities every few weeks - and pay for them herself. ‘This process is so draining,’ says Yvonne. With her diagnosis, this alone can drive her further into the disease. When Yvonne tried to stand during the assessment of her care needs, her whole body began to tremble. And yet the assessor, who did not certify her as needing care, assumed that she was faking it - after all, her wheelchair looked unused. Perhaps because she can only rarely leave the house with it? Nevertheless, the PVA emphasises that all of its assessors are certified and receive regular further training.Yvonne contracted coronavirus at the end of 2020. Even after she officially recovered, headaches and muscle aches remained - and she felt like she was exhausted. As if her body was still fighting an active infection. ‘This is much more than exhaustion,’ says Yvonne. Her Long Covid diagnosis eventually became ME/CFS, POTS and MCAS. Yvonne, who worked in refugee aid before her illness, initially tried her hand at bookkeeping - but that was also too stressful. She feels worse and worse instead of b
Vienna, Austria, August 2024: Yvonne Anreitter contracted coronavirus at the end of 2020. After she recovered, severe headaches and muscle aches remained – she felt exhausted all the time. Her Long Covid diagnosis eventually became ME/CFS, POTS and MCAS. Yvonne, who worked in refugee aid before her illness, had to give up her job. Her world becomes smaller and smaller until she was confined to her bedroom. Yvonne needs the support of her husband, Herbert Anreitter, for all things. Herbert does the shopping, he cleans, he cooks, he drives her in her wheelchair to appointments to fight for disability aid that the government has continually denied her. Yvonne gets up with Herbert at five in the morning so that he can make breakfast for them before he leaves for work. Yvonne then goes back to sleep. When Herbert returns, he helps his wife get dressed. Somehow, the two still manage to maintain a loving and equal marriage. ‘We don't let anything get us down,’ says Herbert, “Yvonne is not ready to give up. “
AUSTRIA, AUGUST 2024: Jan Equiluz, 23, has been severely ill with ME/CFS since 2023 after contracting Covid. He planned to become a professional musician, but his diagnosis changed everything. Due to ME/CFS, Jan’s extreme sensitivity to light and sound has made even listening to music painful. Jan says the isolation is the worst thing. He is angry because he feels so few people take ME/CFS seriously, Jan blames the fact that there isn't more intensive research into it by medical authorities despite over 80,000 cases being diagnosed in Austria alone.
AUSTRIA, AUGUST 2024: Petra Schaschl-Petersmann is 55 years old and she has been ill with ME/CFS since the early 1990s, after an Epstein-Barr infection. Petra is seen at a physiotherapy, session close to her home, one of many things Petra does to try to improve her quality of life. Petra comes from a wealthy background and because of this she has more options. Many people living with ME/CFS do not have these options and that often leads to further decline and strain on the family.
AUSTRIA, AUGUST 2024: Martin Privec is 30 years old and from Upper Austria. Martin has been ill since 2017 after an Epstein-Barr infection “Pfeiffer's glandular fever.” He is seen talking to a bedridden woman with ME/CFS in Berlin with whom he has an online relationship. Martin's story is a story of hope. He has been living with ME/CFS since 2017. After 10 months, at the age of 24, he became almost completely bedridden - more than one visit to the toilet a day in a wheelchair was not possible. Martin was in this condition for four years. “I became ill in my prime. But I take it as it comes,” he says. Today, after medical treatments that have worked miracles for him, Martin is playing basketball again, driving and taking care of a move himself as well as looking for a part-time job. Why is he doing so much better? At first, things didn't look good for Martin: He had to move in with his mother. But she urged him to pull himself together and finally be more active again. Even doctors don't believe Martin. He was told he is faking it, that he is just mentally distressed and needs to pull himself together. Martin decides to break off contact with his mother - and moves into an assisted living community. The majority of the people there are living with psychological issues but it is what the government health services are prepared to offer. There are no alternatives that specialized in ME/CFS. The staff there were there for him 24 hours a day. They accept his limitations, help him with his personal hygiene and bring him food to bed. Every day is hard. Every day, Martin decides to carry on regardless. “I always hoped that there was another medication that I hadn't tried yet,” he says. At some point, this hope became a reality. When Martin started taking low doses of aripiprazole (LDA) and naltrexone (LDN), things started to look up. Rebuilding a life that you have lost without dying is still not easy. For example, Martin had to have diagnoses of psychological
AUSTRIA, AUGUST 2024: Martin Privec is 30 years old and from Upper Austria. Martin has been ill since 2017 after an Epstein-Barr infection “Pfeiffer's glandular fever. ”Martin's story is a story of hope and medicatiopn has helped him to recover a good deal of his health. He is seen playing basketball with a friend, although he can only play for 5 miinutes before he must rest, it is huge progress. He has been living with ME/CFS since 2017. After 10 months, at the age of 24, he became almost completely bedridden - more than one visit to the toilet a day in a wheelchair was not possible. Martin was in this condition for four years. “I became ill in my prime. But I take it as it comes,” he says. Today, after medical treatments that have worked miracles for him, Martin is playing basketball again, driving and taking care of a move himself as well as looking for a part-time job. Why is he doing so much better? At first, things didn't look good for Martin: He had to move in with his mother. But she urged him to pull himself together and finally be more active again. Even doctors don't believe Martin. He was told he is faking it, that he is just mentally distressed and needs to pull himself together. Martin decides to break off contact with his mother - and moves into an assisted living community. The majority of the people there are living with psychological issues but it is what the government health services are prepared to offer. There are no alternatives that specialized in ME/CFS. The staff there were there for him 24 hours a day. They accept his limitations, help him with his personal hygiene and bring him food to bed. Every day is hard. Every day, Martin decides to carry on regardless. “I always hoped that there was another medication that I hadn't tried yet,” he says. At some point, this hope became a reality. When Martin started taking low doses of aripiprazole (LDA) and naltrexone (LDN), things started to look up. Rebuilding a life that you have los
AUSTRIA, AUGUST 2024: Martin Privec is 30 years old and is from Upper Austria. Martin has been ill since 2017 after an Epstein-Barr infection “Pfeiffer's glandular fever. ”Martin's story is a story of hope. He is seen moving into his new accommodations with the help of his father, something that would have been unimaginable a year ago before Martin was able to recover sufficiently with medication. He has been living with ME/CFS since 2017. After 10 months, at the age of 24, he became almost completely bedridden - more than one visit to the toilet a day in a wheelchair was not possible. Martin was in this condition for four years. “I became ill in my prime. But I take it as it comes,” he says. Today, after medical treatments that have worked miracles for him, Martin is playing basketball again, driving and taking care of a move himself as well as looking for a part-time job. Why is he doing so much better? At first, things didn't look good for Martin: He had to move in with his mother. But she urged him to pull himself together and finally be more active again. Even doctors don't believe Martin. He was told he is faking it, that he is just mentally distressed and needs to pull himself together. Martin decides to break off contact with his mother - and moves into an assisted living community. The majority of the people there are living with psychological issues but it is what the government health services are prepared to offer. There are no alternatives that specialized in ME/CFS. The staff there were there for him 24 hours a day. They accept his limitations, help him with his personal hygiene and bring him food to bed. Every day is hard. Every day, Martin decides to carry on regardless. “I always hoped that there was another medication that I hadn't tried yet,” he says. At some point, this hope became a reality. When Martin started taking low doses of aripiprazole (LDA) and naltrexone (LDN), things started to look up. Rebuilding a life that you have lo
AUSTRIA, AUGUST 2024: Martin Privec is 30 years old and from Upper Austria. Martin has been ill with ME/CFS since 2017 after an Epstein-Barr infection. Here he is seen looking at himself in the mirror of his new, more independent accommodation, a huge step forward from where he was. Martin's story is a story of hope. After 10 months, at the age of 24, he became almost completely bedridden - more than one visit to the toilet a day in a wheelchair was not possible. Martin was in this condition for four years. Today, after medical treatments that have worked miracles for him, Martin is playing basketball again, driving and taking care of a move to a more independent apartment himself as well as looking for a part-time job. Martin had a tough history with ME/CFS. He had to move in with his mother. But she urged him to pull himself together and be more active again. Neither his mother nor his doctors believed Martin. He was told he is faking it, that he wa just mentally distressed and needs to pull himself together. Martin decides to break off contact with his mother - and moves into an assisted living community. The majority of the people there are living with psychological issues but it is all the government health services were prepared to offer. There are no alternative assisted living accommodations that specialized in ME/CFS. “I always hoped that there was another medication that I hadn't tried yet,” he says. Martin started taking low doses of aripiprazole (LDA) and naltrexone (LDN), his health began to improve. In order to move on however, Martin had to have a diagnoses of psychological illness cancelled that he never had. The Pension Insurance Institution (PVA) had granted him an occupational disability pension on the basis of a supposed mental illness. But ME/CFS is a neuroimmunology multisystem disease - in other words, it is physical. Martin wants to be declared fit for work again by the PVA so that he can look for a job. . He would like to work in t