Millions Missing Podcast

"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 millionsmissingpodcast@gmail.com or find us on Facebook https://www.facebook.com/MillionsMissingPodcast/ - You are NOT alone!

"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

"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

"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

"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

"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

"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

"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

"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

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

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 millionsmissingpodcast@gmail.com - Learn more about Myalgic Encephalomyelitis at https://www.meaction.net/learn/what-is-me/

"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 millionsmissingpodcast@gmail.com

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 millionsmissingpodcast@gmail.com

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 millionsmissingpodcast@gmail.com

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 millionsmissingpodcast@gmail.com

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 millionsmissingpodcast@gmail.com

Hi and welcome to the #MillionsMissing Podcast, a podcast dedicated to providing a platform for the uninterrupted testimonies of people suffering from chronic illness; a podcast created solely for the purpose of ensuring that these often silenced voices are heard; a podcast to not only help further the advocacy of the chronically ill, but also to provide an unparalleled, highly personal testimony of what it's actually like to live with chronic illness, for the benefit of not only our fellow sufferers, but also our families, friends, carers and to provide invaluable insights to the medical professionals that so often are uninformed. If you'd like to share your story and testimony, email us at millionsmissingpodcast@gmail.com or DM us on Twitter @millionspod - The first episode will feature part 1 of the testimony by Nathalie, a longtime Myalgic Encephalomyelitis sufferer from Canada, who you heard at the beginning of this podcast trailer, so make sure to follow and subscribe to the podcast, on Twitter and your favorite podcast platform, to make sure you never miss an episode. Thank you for listening, and whatever your situation is, know that you are most definitely not alone - we're right here beside you, and we will do everything in our power to make sure your voice is heard

Hi and welcome to the #MillionsMissing Podcast, a podcast dedicated to providing a platform for the uninterrupted testimonies of people suffering from chronic illness; a podcast created solely for the purpose of ensuring that these often silenced voices are heard; a podcast to not only help further the advocacy of the chronically ill, but also to provide an unparalleled, highly personal testimony of what it's actually like to live with chronic illness, for the benefit of not only our fellow sufferers, but also our families, friends, carers and to provide invaluable insights to the medical professionals that so often are uninformed. If you'd like to share your story and testimony, email us at millionsmissingpodcast@gmail.com or DM us on Twitter @millionspod - The first episode will feature part 1 of the testimony by Nathalie, a longtime Myalgic Encephalomyelitis sufferer from Canada, who you heard at the beginning of this podcast trailer, so make sure to follow and subscribe to the podcast, on Twitter and your favorite podcast platform, to make sure you never miss an episode. Thank you for listening, and whatever your situation is, know that you are not alone - we're right here beside you, and we will do everything in our power to make sure your voice is heard