Episodi
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"Litsa Dremousis is the author of Altitude Sickness (Future Tense Books). Seattle Metropolitan Magazine named it one of the all-time "20 Books Every Seattleite Must Read". Her essay "After the Fire" was selected as one of the "Most Notable Essays 2011” by Best American Essays, and The Seattle Weekly named her one of "50 Women Who Rock Seattle". She is an essayist with The Washington Post, where she has written about Myalgic Encephalomyelitis extensively.Her work also appears in The Believer, BlackBook, Esquire, Jezebel, McSweeney's, Monkeybicycle, MSN, New York Magazine, Nylon, The Onion's A.V. Club, Paste, PEN Center USA, Poets & Writers, Publishers Weekly, The Rumpus, Salon, Spartan Lit, The Weeklings, in several anthologies, and on NPR, KUOW, and additional outlets. litsadremousis.com, @LitsaDremousis.She has had M.E. for 32+ years, thyroid cancer for seven years, and had a small heart attack at the end of 2022. She has spent an inordinate amount of time sending research to her physicians re persons w/ M.E. having higher rates of both cancer and of heart complications and remains disgusted by a medical community that repeatedly fails persons w/ M.E. Her upcoming book, Fire in the Hole: A Eulogy for the Living covers this terrain, using her own story to illuminate how a disabling, degenerative, potentially fatal illness afflicting three million persons in the U.S. and 20 million persons worldwide was erroneously dismissed, leading to disaster. She is profoundly grateful she can write from bed, otherwise she would have very little life at all."Millions Missing Podcast is not and nor will it ever be monetized, and it is completely ad-free; no one is making any money off of this important advocacy project, and it is going to stay that way. If you enjoyed this podcast, please do consider subscribing, rating and leaving a review on your podcast platform of choice, as it greatly helps others find the show, taking part of and sharing these important testimonies and perhaps be inspired to share their very own story of living with chronic illness. If you would like to share you own testimony, or have an inquiry, please write to [email protected] for initial contact, and you can find the podcast on "X" @millionspod, on Blue Sky @millionsmissingpod.bsky.social and for a list of what platforms to find the podcast on, please visit linktr.ee/millionsmissingpodcastIn solidarity,Rich - Millions Missing Podcast
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"My name is Sibylle. I traveled the world as a freelancer, made films and reports as well as TV features, unable to work since spring 2017, in a constant downward health spiral since 2014. I have been banished from a full, sometimes stressful, very mobile life to the isolated horizontal of my own four walls. I was diagnosed with ME/CFS in 2018. And I knew very well that unfortunately - although it was bad enough - that it was and still is only part of the truth. Meanwhile, I am also diagnosed with Fluoroquinolone Toxicity also known as FQAD (Fluoroquinolone Associated Disability), POTS, MCAS and Cranio Cervical Instability CCI a whole bunch of reactivated infections, from Herpes to Lyme, and have the full blown painful picture of SmallFiber Neuropathy symptoms, but no access anymore to tests. AND: as many others, I do not receive proper medical treatments.
Any form of exertion, which can be mental or physical, makes my body crash. Immediately. Even sitting is difficult and hardly possible due to muscle weakness, palpitations, blood pressure derailments. Other symptoms include weight loss, pain in muscles, tendons, nerves and bones, vibrating - as if electricity and shards run through the body - and burning all over the body, muscle and nerve twitching, balance problems, dizziness, shortness of breath, cardiac arrhythmias/spikes and tachycardia and many more of the long list.
For me personally the huge medical neglect is one of the biggest medical scandals ever. So many people all over the world. It’s devastating. It makes me angry every day. And as I wrote once, please never write, If I am going to die, that I passed away peacefully: you can write: she died in anger about the shameful medical history. A medical world who lost its moral and ethics.
Thank you very much for given me the opportunity to do this podcast. And please excuse me, my bad english and pronunciation. Thank you, and please take care. Something has to change, very soon. S."
You can find Sibylle's website at https://sibylledahrendorf.jimdofree.com/
Please let the Millions Missing Podcast help platform your own incredibly important testimony, by emailing to [email protected] -
Episodi mancanti?
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"Hi. I'm Daniel. I'm 42 and live with my wife and two, nearly both teenage, children. We live on the farm where I grew up in the north east of England. My story involves me having to come to terms with becoming ill at 37 with ME, again. It was my worst nightmare coming true after having lived with the condition for 7 years in my adolescence and 'recovering' for almost exactly twenty years. I never thought the nightmare would return. I'm passionate about helping to build community and a friend and I have recently started a podcast about living with ME, creativity and making meaning (Post-Exertional Mayonnaise). My biggest fear is that my condition declines and we won't be able to build what we've started. Thanks for taking the time to listen to my story." You can find Daniel's podcast website at www.pempod.com - their youtube channel at youtube.com/@Post-ExertionalMayonnaise - his blog at http://thelowsideblog.com/ - his youtube music channel at https://youtube.com/@thelowside6867 and his Twitter/X account @talmandaniel - Please let the Millions Missing Podcast help platform your own incredibly important testimony, by emailing to [email protected]
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"Hello fellow spoonies, my name is Laura. I live in the beautiful state of South Dakota. I'm blessed to be married to a pretty incredible guy, and I'm a proud mama bear to two wonderful human beings. I've been sick for the past eleven years, tho I suspect it actually goes back to childhood. I really fought contributing to the Millions Missing Podcast, because while a part deep inside me wants to hear and be heard, this tiny voice in my head told me it really doesn't matter. Through much encouragement, I told that voice to get lost, and so, here I am." - If you want to read up on the illness Myalgic Encephalomyelitis (ME), Mast Cell Activation Syndrome (MCAS), Postural Orthostatic Tachycardia Syndrome (POTS), Fibromyalgia, Ehlers-Danlos syndrome, please visit http://me-pedia.org and https://www.meaction.net - For more info on Ménière's disease, see https://en.m.wikipedia.org/wiki/M%C3%A9ni%C3%A8re%27s_disease - If you want to read up on Raynaud syndrome, see https://en.m.wikipedia.org/wiki/Raynaud_syndrome - To read more about mold related health issues, see https://en.m.wikipedia.org/wiki/Mold_health_issues#:~:text=Exposure%20to%20mold%20can%20cause,time%20and%20nature%20of%20exposure. - If you would like to help further research into Myalgic Encephalomyelitis, feel free to check out the following links: https://med.stanford.edu/chronicfatiguesyndrome/donate.html - https://www.omf.ngo/ - https://www.actionforme.org.uk/ - https://the-sleepy-zebra.com/ - Laura has a blog project that you can find at https://the-sleepy-zebra.com/ - We strongly encourage you to share your own story and testimony, of what it is actually like to live with chronic illness; DM us on Twitter @millionspod, email us at [email protected] or find us on Facebook https://www.facebook.com/MillionsMissingPodcast/ - You are NOT alone!
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"This podcast provides an uninterrupted account of my 40 year battle with post viral syndrome, starting at age 12, with severe mono. Second round of severe mono at 30 disabled me. Due to lack of supports and abdication of care on a host of fronts, I deteriorated over the next 25 years, into what will soon be my entirely preventable death, when I run out of money. Yeah, it still feels surreal, that in the 8th richest country in the world, it's that dire." You can find out more about Madeline on Twitter @IamMADELINEpod - the website https://www.iammadeline.com/ - her podcast https://anchor.fm/i-am-madeline - or read the three articles written about her: https://www.citynews1130.com/2020/07/27/vancouver-woman-disabilities-medically-assisted-dying/ - https://www.citynews1130.com/2020/11/24/vancouver-woman-me-covid-19/ - https://thetyee.ca/News/2021/07/05/I-Should-Not-Have-To-Beg-For-My-Life/ - If you want to read up on the illness Myalgic Encephalomyelitis (ME), please visit http://me-pedia.org and https://www.meaction.net
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"This podcast provides an uninterrupted account of my 40 year battle with post viral syndrome, starting at age 12, with severe mono. Second round of severe mono at 30 disabled me. Due to lack of supports and abdication of care on a host of fronts, I deteriorated over the next 25 years, into what will soon be my entirely preventable death, when I run out of money. Yeah, it still feels surreal, that in the 8th richest country in the world, it's that dire." You can find out more about Madeline on Twitter @IamMADELINEpod - the website https://www.iammadeline.com/ - her podcast https://anchor.fm/i-am-madeline - or read the three articles written about her: https://www.citynews1130.com/2020/07/27/vancouver-woman-disabilities-medically-assisted-dying/ - https://www.citynews1130.com/2020/11/24/vancouver-woman-me-covid-19/ - https://thetyee.ca/News/2021/07/05/I-Should-Not-Have-To-Beg-For-My-Life/ - If you want to read up on the illness Myalgic Encephalomyelitis (ME), please visit http://me-pedia.org and https://www.meaction.net
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"This podcast provides an uninterrupted account of my 40 year battle with post viral syndrome, starting at age 12, with severe mono. Second round of severe mono at 30 disabled me. Due to lack of supports and abdication of care on a host of fronts, I deteriorated over the next 25 years, into what will soon be my entirely preventable death, when I run out of money. Yeah, it still feels surreal, that in the 8th richest country in the world, it's that dire." You can find out more about Madeline on Twitter @IamMADELINEpod - the website https://www.iammadeline.com/ - her podcast https://anchor.fm/i-am-madeline - or read the three articles written about her: https://www.citynews1130.com/2020/07/27/vancouver-woman-disabilities-medically-assisted-dying/ - https://www.citynews1130.com/2020/11/24/vancouver-woman-me-covid-19/ - https://thetyee.ca/News/2021/07/05/I-Should-Not-Have-To-Beg-For-My-Life/ - If you want to read up on the illness Myalgic Encephalomyelitis (ME), please visit http://me-pedia.org and https://www.meaction.net
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"This podcast provides an uninterrupted account of my 40 year battle with post viral syndrome, starting at age 12, with severe mono. Second round of severe mono at 30 disabled me. Due to lack of supports and abdication of care on a host of fronts, I deteriorated over the next 25 years, into what will soon be my entirely preventable death, when I run out of money. Yeah, it still feels surreal, that in the 8th richest country in the world, it's that dire." You can find out more about Madeline on Twitter @IamMADELINEpod - the website https://www.iammadeline.com/ - her podcast https://anchor.fm/i-am-madeline - or read the three articles written about her: https://www.citynews1130.com/2020/07/27/vancouver-woman-disabilities-medically-assisted-dying/ - https://www.citynews1130.com/2020/11/24/vancouver-woman-me-covid-19/ - https://thetyee.ca/News/2021/07/05/I-Should-Not-Have-To-Beg-For-My-Life/ - If you want to read up on the illness Myalgic Encephalomyelitis (ME), please visit http://me-pedia.org and https://www.meaction.net
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"This podcast provides an uninterrupted account of my 40 year battle with post viral syndrome, starting at age 12, with severe mono. Second round of severe mono at 30 disabled me. Due to lack of supports and abdication of care on a host of fronts, I deteriorated over the next 25 years, into what will soon be my entirely preventable death, when I run out of money. Yeah, it still feels surreal, that in the 8th richest country in the world, it's that dire." You can find out more about Madeline on Twitter @IamMADELINEpod - the website https://www.iammadeline.com/ - her podcast https://anchor.fm/i-am-madeline - or read the three articles written about her: https://www.citynews1130.com/2020/07/27/vancouver-woman-disabilities-medically-assisted-dying/ - https://www.citynews1130.com/2020/11/24/vancouver-woman-me-covid-19/ - https://thetyee.ca/News/2021/07/05/I-Should-Not-Have-To-Beg-For-My-Life/ - If you want to read up on the illness Myalgic Encephalomyelitis (ME), please visit http://me-pedia.org and https://www.meaction.net
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"This podcast provides an uninterrupted account of my 40 year battle with post viral syndrome, starting at age 12, with severe mono. Second round of severe mono at 30 disabled me. Due to lack of supports and abdication of care on a host of fronts, I deteriorated over the next 25 years, into what will soon be my entirely preventable death, when I run out of money. Yeah, it still feels surreal, that in the 8th richest country in the world, it's that dire." You can find out more about Madeline on Twitter @IamMADELINEpod - the website https://www.iammadeline.com/ - her podcast https://anchor.fm/i-am-madeline - or read the three articles written about her: https://www.citynews1130.com/2020/07/27/vancouver-woman-disabilities-medically-assisted-dying/ - https://www.citynews1130.com/2020/11/24/vancouver-woman-me-covid-19/ - https://thetyee.ca/News/2021/07/05/I-Should-Not-Have-To-Beg-For-My-Life/ - If you want to read up on the illness Myalgic Encephalomyelitis (ME), please visit http://me-pedia.org and https://www.meaction.net
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"This podcast provides an uninterrupted account of my 40 year battle with post viral syndrome, starting at age 12, with severe mono. Second round of severe mono at 30 disabled me. Due to lack of supports and abdication of care on a host of fronts, I deteriorated over the next 25 years, into what will soon be my entirely preventable death, when I run out of money. Yeah, it still feels surreal, that in the 8th richest country in the world, it's that dire." You can find out more about Madeline on Twitter @IamMADELINEpod - the website https://www.iammadeline.com/ - her podcast https://anchor.fm/i-am-madeline - or read the three articles written about her: https://www.citynews1130.com/2020/07/27/vancouver-woman-disabilities-medically-assisted-dying/ - https://www.citynews1130.com/2020/11/24/vancouver-woman-me-covid-19/ - https://thetyee.ca/News/2021/07/05/I-Should-Not-Have-To-Beg-For-My-Life/ - If you want to read up on the illness Myalgic Encephalomyelitis (ME), please visit http://me-pedia.org and https://www.meaction.net
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"This podcast provides an uninterrupted account of my 40 year battle with post viral syndrome, starting at age 12, with severe mono. Second round of severe mono at 30 disabled me. Due to lack of supports and abdication of care on a host of fronts, I deteriorated over the next 25 years, into what will soon be my entirely preventable death, when I run out of money. Yeah, it still feels surreal, that in the 8th richest country in the world, it's that dire." You can find out more about Madeline on Twitter @IamMADELINEpod - the website https://www.iammadeline.com/ - her podcast https://anchor.fm/i-am-madeline - or read the three articles written about her: https://www.citynews1130.com/2020/07/27/vancouver-woman-disabilities-medically-assisted-dying/ - https://www.citynews1130.com/2020/11/24/vancouver-woman-me-covid-19/ - https://thetyee.ca/News/2021/07/05/I-Should-Not-Have-To-Beg-For-My-Life/ - If you want to read up on the illness Myalgic Encephalomyelitis (ME), please visit http://me-pedia.org and https://www.meaction.net
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My name is Whitney Dafoe. I have had ME/CFS since 2004, when I was 21. In 2008 I went to India and wound up going from mild ME/CFS to severe ME/CFS overnight. It was up and down for a few years after that, but in 2013 I plummeted back into extremely severe ME/CFS. For the next 7 years I was completely bedridden, unable to speak, unable to eat or drink a crumb of food or a drop of water and most of the time unable to move even a muscle without crashing. In 2020 I started Abilify and it gave me a modest improvement that allowed me to use my computer, phone, type and think more clearly. But I am still bedridden, unable to speak, fed by a Jtube feeding tube and get all fluids through a Hickman Port in my chest. Since improving from Abilify I have since been writing Facebook and blog posts about ME/CFS and photographing my life on an Instagram account. This manuscript is my story and an attempt to describe as clearly as possible what it is like to live with extremely severe ME/CFS. It is significant because it is a peer reviewed published manuscript along with research papers. Doctors, healthcare workers, caregivers, supporters and patients will be able to read it and better understand the experience of severe ME/CFS. You can read more about me on my website and ME/CFS blog here: www.whitneydafoe.com/mecfs You can follow me on Facebook here: www.facebook.com/whitneydafoe You can follow my photographs documenting life with severe ME/CFS on Instagram here: www.instagram.com/whitneydafoe
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My name is Whitney Dafoe. I have had ME/CFS since 2004, when I was 21. In 2008 I went to India and wound up going from mild ME/CFS to severe ME/CFS overnight. It was up and down for a few years after that, but in 2013 I plummeted back into extremely severe ME/CFS. For the next 7 years I was completely bedridden, unable to speak, unable to eat or drink a crumb of food or a drop of water and most of the time unable to move even a muscle without crashing. In 2020 I started Abilify and it gave me a modest improvement that allowed me to use my computer, phone, type and think more clearly. But I am still bedridden, unable to speak, fed by a Jtube feeding tube and get all fluids through a Hickman Port in my chest. Since improving from Abilify I have since been writing Facebook and blog posts about ME/CFS and photographing my life on an Instagram account.
This manuscript is my story and an attempt to describe as clearly as possible what it is like to live with extremely severe ME/CFS. It is significant because it is a peer reviewed published manuscript along with research papers. Doctors, healthcare workers, caregivers, supporters and patients will be able to read it and better understand the experience of severe ME/CFS.
You can read more about me on my website and ME/CFS blog here:
www.whitneydafoe.com/mecfs
You can follow me on Facebook here:
www.facebook.com/whitneydafoe
You can follow my photographs documenting life with severe ME/CFS on Instagram here:
www.instagram.com/whitneydafoe -
"I tried to do some graded exercise, but I soon realized that it was bad advice, as I felt immediately worse afterwards, with excruciating pain in my legs and an increase in all other symptoms. My doctor helped me with some medication for my dizziness and he proposed antidepressants - Amitriptyline - which I gave a try, but soon found I couldn't tolerate, as I felt like a complete zombie. I wasn't really depressed, just frustrated I suppose." - Rosalynde is diagnosed with Myalgic Encephalomyelitis; hear her own testimony, on how living with Myalgic Encephalomyelitis has impacted her life. Rosalynde has had published several books of her poety, writing about her experience living with Myalgic Encephalomyelitis; not only as a creative outlet to express herself, but also to raise awareness and help fund research. You can learn more about her poetry, among other things, on her blog, at https://roslemarchand.blogspot.com and you can also find Rosalynde on Twitter @frenchros and Facebook at https://m.facebook.com/My-A-Z-of-ME-1403270009902127/?ref=pages_you_manage - If you would like to join Rosalynde in sharing your story, of what it's like to actually live with chronic illness, feel free to contact us on Twitter @millionspod or email us at [email protected] - Learn more about Myalgic Encephalomyelitis at https://www.meaction.net/learn/what-is-me/
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"Months went by, more and more tests were added, and I was really ending up with more questions than answers, after these test results came back in, mostly normal, and I kept having the experience of sitting down for the good news: ‘there's nothing wrong with you‘, when to me, that wasn't good news, because I was continuing to deteriorate and not knowing what was wrong with me..."
- Diana is diagnosed with #MyalgicEncephalomyelitis; hear her own testimony, on the far too familiar, difficult journey towards her diagnosis. You can find Diana on Twitter @enignosos, and If you would like to join Diana in sharing your story, of what it's like to actually live with chronic illness, feel free to contact us on Twitter @millionspod or email us at [email protected] -
Nathalie has suffered from Myalgic Encephalomyelitis for over 25 years, and, due to her illness, has been bedbound for the past three years. This is her story, told in four episodes, that will be published once a week, every Monday, over the course of the coming weeks. You can find Nathalie on Twitter @welcomewords - If you would like to join Nathalie in sharing your story, of what it's like to actually live with chronic illness, feel free to contact us on Twitter @millionspod or email us at [email protected]
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Nathalie has suffered from Myalgic Encephalomyelitis for over 25 years, and, due to her illness, has been bedbound for the past three years. This is her story, told in four episodes, that will be published once a week, every Monday, over the course of the coming weeks. You can find Nathalie on Twitter @welcomewords - If you would like to join Nathalie in sharing your story, of what it's like to actually live with chronic illness, feel free to contact us on Twitter @millionspod or email us at [email protected]
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Nathalie has suffered from Myalgic Encephalomyelitis for over 25 years, and, due to her illness, has been bedbound for the past three years. This is her story, told in four episodes, that will be published once a week, every Monday, over the course of the coming weeks. You can find Nathalie on Twitter @welcomewords - If you would like to join Nathalie in sharing your story, of what it's like to actually live with chronic illness, feel free to contact us on Twitter @millionspod or email us at [email protected]
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Nathalie has suffered from Myalgic Encephalomyelitis for over 25 years, and, due to her illness, has been bedbound for the past three years. This is her story, told in four episodes, that will be published once a week, every Monday, over the course of the coming weeks. You can find Nathalie on Twitter @welcomewords - If you would like to join Nathalie in sharing your story, of what it's like to actually live with chronic illness, feel free to contact us on Twitter @millionspod or email us at [email protected]
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