Post-Exertional Mayonnaise

Second part of Dan's road trip. Keep listening to the end to hear me a little drunk! Be aware that there's background noise in the last minute and 26 seconds. In this episode Dan talks about cancelled trains, the experience of seeing old friends from a different world and reflections on Palestinian and very severe ME suffering. Keep singing people.I talk briefly about a go fund me page for Rich from the millions missing podcast. Let's help save him from permanent brain damage.https://www.gofundme.c...​

Hi, Dan here. Sorry it's been a while since we've made any content. I've been going through some stuff and Dov's running on low energy. Anyway. I've seen a level of improvement over the last year and particularly over the last six weeks. So for the next week and a half I'm off on a road trip to meet old friends, meet good friends for the first time and maybe get drunk if I get the opportunity! I'll be recording some ME audio reflections. Maybe not while I'm drunk but that might be fun listening!This episode includes my longest drive in 8 years and the morning after.

In this episode of Post-Exertional Mayonnaise, Dov Zeller, Litsa Dremousis and Daniel Moore discuss the challenges of living with ME and chronic illness, focusing on the fluctuations in health and the emotional costs associated with these ups and downs. They share personal experiences, listener contributions, and coping strategies, emphasizing the importance of community support and understanding in navigating these challenges. In this conversation, the speakers discuss the complexities of living with chronic illnesses such as ME and long COVID. They explore the emotional challenges, the importance of self-compassion, and the need for community support. The conversation also touches on recent research breakthroughs and the ongoing struggles faced by patients, including safety concerns in the current socio-political climate. Ultimately, they emphasize the significance of finding joy and connection amidst adversity.#myalgicencephalomyelitis #chronicillness #mecfs www.pempod.compempodcast23@gmail.com

In this episode of Post-Exertional Mayonnaise, the hosts, Daniel Moore, Litsa Dremousis and Dov Zeller delve into the intersection of chronic illness and toxic religion, exploring the emotional and spiritual harm that can arise from religious beliefs. They discuss Kate Bowler's book, 'Everything Happens for a Reason and Other Lies I've Loved,' which addresses the imposition of reasons for illness by others. The conversation highlights the burden of blame often placed on individuals with chronic illnesses and the impact of generational curses and forgiveness narratives within religious contexts. In this conversation, the speakers delve into the complexities of illness, spirituality, and societal attitudes towards disability. They explore the concept of generational curses, the role of prayer and support, and the impact of spiritual beliefs on health. The discussion highlights the challenges faced by individuals with chronic illnesses, the misunderstanding and cruelty they often encounter, and the societal tendency to blame individuals for their health conditions. Ultimately, the conversation emphasizes the importance of acceptance, understanding, and community care in navigating illness. In this conversation, the speakers explore the complex interplay between disability, healthcare and personal beliefs. They discuss societal perceptions of disability, the inequities in healthcare systems, and the impact of toxic positivity on those facing chronic illness. #myalgicencephalomyelitis #Spiritualabuse#toxicreligion#religioustrauma If you'd be interested in a closed facebook group to discuss the intersection of toxic spirituality chronic illness, please let us know.pempodcast23@gmail.comwww.pempod.comSupport the podcast!https://www.patreon.com/c/Pempod

In this episode, Daniel Moore, Litsa Dremousis and Dov Zeller discuss the complexities of living with ME and the role of social media in building community and relationships. They explore the impact of isolation, the significance of online friendships, and the challenges of navigating medical misinformation. The conversation emphasizes the importance of finding balance in online interactions and the comfort found in shared experiences within the ME community.Tell us your 'bring a thing'! Is there anything that has brought you joy recently?https://pempod.com/pempodcast23@gmail.com

In this episode of the Post-Exertional Mayonnaise podcast, Daniel Moore, Litsa Dremousis, and Dov Zeller discuss the challenges of living with ME and chronic illness, the impact of recent losses in the community, and the importance of navigating personal and political changes. They reflect on coping mechanisms, the significance of community support, and the role of media in providing comfort. The conversation emphasizes the need for understanding and empathy in a world that often overlooks the realities of chronic illness. Follow us on Bluesky! Dov: @dovsz.bsky.social Litsa: @litsadremousis.bsky.social Daniel: @talmandaniel.bsky.social Book mentioned by Litsa: https://en.wikipedia.org/wiki/Parable_of_the_Sower_(novel) Episode with Judith: https://www.youtube.com/watch?v=hNVl69RivF4&t=1238s Sammy Lincroft, ME and more account: https://www.instagram.com/m.e_and_more/ Contact us: pempodcast23@gmail.com Website: https://www.pempod.com/ Patreon: https://www.patreon.com/Pempod

In this episode of the Post-Exertional Mayonnaise podcast, host Daniel Moore speaks with Merel van der Noop, the music director of the Long COVID Choir and Long COVID Kids Choir. They discuss Merel's personal journey with Long COVID, the challenges of navigating healthcare, and the transformative power of music in coping with chronic illness. The conversation highlights the importance of community, support, and creative expression in the healing process, as well as the unique experiences of children with Long COVID. Merel shares insights into the formation of the Long COVID Choir, the activities they engage in, and the significance of fostering connections among participants. The choir is open to anyone with long term chronic conditions. Long covid choir: https://www.longcovid.org/support/long-covid-choir A home within our heart recording: https://youtu.be/xzyLJAyL8Fs?si=2Q6feGtn4IMFLvcd Contact us: www.pempod.com Pempodcast23@gmail.com

In this episode of Post-Exertional Mayonnaise, hosts Dov and Daniel explore the themes of social isolation and sensory overload experienced by those living with ME and chronic illness. They discuss the impact of these conditions on social lives, the challenges of navigating social interactions, and the absurdity of medical care. The conversation highlights the emotional toll of social deconditioning, the importance of community, and the joy found in mundane social interactions. Through humour and shared experiences, they reflect on the complexities of maintaining connections in a world that often feels distant and overwhelming.#chronicillness #myalgicencephalomyelitis #socialisolation Contact us: pempodcast23@gmail.com https://www.pempod.com/

In this episode of the Post-Exertional Mayonnaise podcast, Daniel Moore speaks with Lisanne Jacobs, a songwriter and chronic illness advocate, about her journey with ME and the role of creativity in coping with chronic illness. Lisanne shares her personal story, including her diagnosis, struggles with healthcare, and the importance of music as a form of expression and healing. They discuss the challenges of navigating the healthcare system, the impact of chronic illness on daily life, and the hope that can be found in small improvements. Lisanne also reflects on her songwriting process and the influence of other artists on her work, emphasising the importance of connection and representation in the chronic illness community. Homeostasis lyrics: It gets harder every fall When it rains through bedroom walls, it pours ‘til doctor’s don’t care anymore You fake the art of getting by Weary hearts, blurry sights set on elusive finish lines We’re a long, long way from homeostasis There’s no time to waste, but we’re caught in a loop Oh we long for a taste of something good Crossing off each day we’ve made it through And it’s ever so still in the waiting room Hmmmmm “When you get stuck, there’s a window” says the lucky one on the other side (But) all we do is try “Where there’s a maze, there’s an exit” Oh it’s a race against bitter bones to find it before all of our youth runs dry We’re a long, long way from homeostasis When all else fails, time could move us through When the green turns grey, oh we’ll get creative Painting old vases ‘til we’ve paid our dues And it’s ever so dark but we could make it through one more year in this waiting Roooooooom Here, take my hand, let’s err on the side of hope My dear, take the stand and swear that you won’t let go Oh the least we have is not being (the least bit) alone... ...while breathing the art of getting by Weary hearts, blurry sights set on elusive finish lines We’re a long, long way from homeostasis When everything aches, love could move us through When the green turns grey, oh we’ll get creative I’ll sing your praises ’til you’re singing too And it’s ever so dull but we could paint it blue Every inch of this waiting room Oh it’s ever so still but love will lead us through one more day in this waiting room Lisanne's music can be found on Instagram: https://www.instagram.com/lisannejacobsmusic?utm_source=ig_web_button_share_sheet&igsh=ZDNlZDc0MzIxNw== Daniel's track: quit button https://youtu.be/0w31Z4bFqQ0?si=UWREvOxtCf0X_NWz Turnto link: https://www.turnto.ai/?utm_source=link&utm_medium=share&utm_campaign=pempodcast Contact us: https://www.pempod.com/ pempodcast23@gmail.com

In this episode, our third and final part of our chronic illness and cancer mini-series, Oonagh Carr talks to Daniel about her profound journey living with long COVID and a subsequent breast cancer diagnosis. She discusses the drastic changes in her life, the challenges of navigating the healthcare system, and the importance of community support. Oonagh emphasizes the need for better understanding and research into long COVID, as well as the emotional toll of living with chronic illness. Through her story, she highlights the resilience required to cope with these overlapping health challenges and the significance of advocating for oneself in medical settings. Contact us: pempodcast23@gmail.com https://www.pempod.com/

Catherine Hale shares her chronic illness story and the journey of founding the Chronic Illness Inclusion Project. She discusses the challenges of living with ME and the impact it has had on her life, including the loss of being a parent and the realization that her future may be cut short. She also talks about the difficulties of finding flexible work opportunities and the lack of representation for people with chronic illness in the disability rights movement. The Chronic Illness Inclusion Project aimed to bridge the gap between the chronic illness community and the disability rights movement, but ultimately faced funding challenges and had to be discontinued. The conversation explores the legacy of the Chronic Illness Inclusion Project and the importance of the term 'Energy Limiting Condition' as an umbrella term for various chronic conditions. The concept emerged from the research process and was developed by a diverse group of individuals with different conditions who shared the experience of fatigue as the most debilitating aspect of their conditions. The term aims to convey the impact of energy impairment and the need for better understanding and support. The conversation also touches on the challenges of social care and PIP/Social Security assessments and the limited recognition of cognitive impairment in ME. To download the turnto app, click here! https://www.turnto.ai/?utm_source=link&utm_medium=share&utm_campaign=pempodcast Visit out website: https://www.pempod.com/ Contact us: pempodcast23@gmail.com

This episode of the Post-Exertional Mayonnaise podcast features a conversation about living with ME and cancer. Jennifer Smith shares her experience of being diagnosed with ME in 2020 and later being diagnosed with breast cancer. She discusses the challenges of navigating medical appointments and treatments while dealing with severe ME symptoms. Litsa Dremousis also shares her experience of being diagnosed with thyroid cancer and the difficulties she faced whilst interacting with physicians. Both guests highlight the importance of finding supportive healthcare professionals and the need for better information and resources for individuals with ME and cancer. In this conversation, Jennifer and Litsa talk about the challenges of navigating the healthcare system, the lack of understanding and support from doctors, and the emotional toll of living with chronic illness. They also discuss the importance of advocating for oneself and the need for more research and awareness around the intersection of ME/CFS and cancer. The conversation highlights the need for compassionate and comprehensive care for individuals with multiple chronic illnesses. If you're impacted by the matters raised in this programme, please reach out to someone close or a supportive organisation. https://www.pempod.com/ pempodcast23@gmail.com

Anneke Vliegen, author of Recognise ME, shares her memoir about medical gaslighting and living with chronic illness. She discusses her journey from childhood to adulthood, experiencing various symptoms and misdiagnoses along the way. Anneke emphasizes the importance of open and honest communication in her relationships. She reflects on the challenges of losing friendships and offers advice to others in similar situations. Anneke’s book sheds light on the emotional impact of chronic illness and the need for understanding and support. In this conversation, Anneke discusses medical gaslighting and the importance of being taken seriously as a patient. We talk about the impact of medical gaslighting on a person's dignity and self-blame, as well as the need for doctors to have humility and acknowledge when they don't know something. We also touch on the concept of medical zebras and the role of patient advocacy in challenging medical gaslighting. The conversation highlights the need for open and honest communication and the importance of educating healthcare professionals about conditions like ME. Recognise ME can be found here: https://amzn.eu/d/ipedpNo Anneke's blog, Flying Through the woods: https://flyingthroughthewoods.weebly.com/ https://www.pempod.com/ Our patreon if you'd like to support the podcast: https://www.patreon.com/Pempod Download the turnto app to support the podcast: https://www.turnto.ai/?utm_source=link&utm_medium=share&utm_campaign=pempodcast

Jessica Dove London, founder of the Turnto app, joins Daniel to discuss her journey and the purpose of the app. The app aims to bridge the knowledge translation gap in healthcare by providing people with ME and Long Covid with curated research, lived experiences, tips, and insights related to their specific health conditions. The app delivers personalized updates on a daily basis, allowing users to stay informed without feeling overwhelmed. The community-driven platform also allows users to share their own experiences and engage with others. The app is currently focused on cerebral palsy and ME/Long COVID. The app uses AI to curate and generate content based on user preferences and needs. The team behind Turnto is focused on building a community-driven platform that offers valuable resources and connects users with relevant opportunities, such as clinical trials and research participation. The app is free to use, and the team is exploring potential revenue models that align with their mission. The long-term goal is to create a comprehensive and accessible platform that improves access to treatment and support for individuals with chronic illnesses. Post-Exertional Mayonnaise podcast is pleased to be associated with Turnto and if you use the link below to download the app, or mention the podcast when signing up we will benefit! https://www.turnto.ai/?utm_source=link&utm_medium=share&utm_campaign=pempodcast Contact us: www.pempod.com pempodcast23@gmail.com

In memory of Maeve Boothby O'Neill, we re-release this episode from 2023 whereby Sarah Boothby reads excerpts from Maeve's unpublished novel, The Alchemists; or Economic Consequences of the peace. In a small Dartmoor village, the postman goes missing and is found unconscious in a hedge. The villagers speculate about what could have happened, but the truth remains a mystery. The story explores the themes of community and class differences. The author plays with the genre of detective fiction, creating suspense without a dead body. The arrival of a detective from Exeter adds intrigue to the story. The conversation explores various themes in the book, including the Orchard family's background, their wealth and treatment of servants, and the mystery surrounding the missing parcel. The conversation also touches on the protagonist's experience with chronic illness and the therapeutic nature of writing. The discussion highlights the beauty of the book's descriptions and the parallels between the historical setting and present-day issues. The conversation concludes with a reflection on the ongoing inquest into Maeve's death and the need for change in the treatment of ME.

In Which Daniel Tries a Smoothie and Learns that GET was sold for $20,000: Rachel Riggs, also known as the food phenom on Instagram, joins Daniel to discuss her journey living with ME and her passion for food and nutrition. Rachel shares how Jason Mraz came to endorse her upcoming book, All in Good Taste, and the challenges she faced in the publishing industry as a disabled cookbook author. She also talks about her misdiagnosis of MS and her experience with different treatments. Rachel emphasizes the importance of nutrition whilst living with chronic illness and shares her strategies for creating healthy meals despite limited energy. Rachel discusses the challenges of eating healthily with ME/CFS and how she developed a cookbook out of her own experiences with the condition. She talks about the difficulty of adapting her diet due to food intolerances and the importance of finding ways to enjoy food while still meeting nutritional needs. Rachel shares her experience of the lengthy process of creating the cookbook, from developing recipes to dealing with the book deal and photo shoots. She also mentions some of her favourite recipes from the book, including creamy soups, almond flour cakes, and a tahini dip. Rachel can be found on Instagram: https://www.instagram.com/food.phenom/ Facebook: https://www.facebook.com/share/mXeotSmiWxUZc2Ah/ Sign up to Rachel's substack: https://rachelriggs.substack.com/ Rachel's website is here: https://www.rachriggs.com/ You can sign up to a newsletter to get the latest news on the cookbook Contact the podcast either via our website: https://www.pempod.com/ or e-mail us pempodcast23@gmail.com

Dan and Dov catch up to launch our new patreon service. Patreon is a website and app which enables you to give regularly to support the podcast. We will also sporadically be posting exclusive shorter episodes directly to Patreon for members. If you choose a paid support level of $5 per month or more, we'll send you a podcast tote bag or mug as our gift to you! Once you've signed up to our paid patreon, then please e-mail us to let us know your address and choice of gift! At present our gifts are only available to listeners in the UK but if you live somewhere else and would still like to support us, you're welcome to do so and we'll try to get you a gift as soon as possible! To sign up to our patreon, find us over at https://www.patreon.com/Pempod You can also download the patreon app and search for us on the app! Thanks for supporting us! Contact us via our website: https://www.pempod.com/ Or e-mail us at pempodcast23@gmail.com

Apologies for initial sound problems. We had some technical difficulties at first and needed to try and clean up the sound. Please do stick with us though! In this conversation, Dan, Dov, and Jeremy Jeffs discuss Jeremy's project of photographing people with ME. Jeremy shares his own experience with ME and how he got into filmmaking and photography. They explore the different challenges and rewards of photographing people with ME, including the intimate nature of the process and the importance of informed consent. They also discuss the significance of the photographs in capturing the lived experiences of people with ME and the symbolism of windows and doorways in the images. Jeremy discusses his photography project capturing the lives of people with ME/CFS. He explains how he uses black and white photography to convey the emotions and experiences of individuals with the illness. Jeremy also talks about the challenges of managing his own ME/CFS while working on the project and his hopes for raising awareness and changing perceptions through his art. He invites others to participate in the project and shares his plans for exhibitions and publications. If you'd be interested in being a part of the project, Jeremy can be contacted via e-mail here: jeremy@magnetofilms.com Podcast website: www.pempod.com Contact us: pempodcast23@gmail.com

Content Warning: Discussion includes end of life care and Medical Assistance In Dying. Jeffery Smith shares his experience living with ME and cancer. He discusses the challenges he faced as a queer individual growing up in a small town and the impact of societal stigma on his self-perception. Jeffery talks about his journey with ME, starting with a bout of Mono (Glandular Fever) that eventually led to a diagnosis of ME. He describes the daily struggles and limitations he faces due to the illness. Jeffery also opens up about his experience with cancer, including the delayed diagnosis and the subsequent metastasis. He shares his journey with immunotherapy and the unexpected improvement in his ME symptoms during his cancer treatment. In this conversation, Jeffery discusses his current health challenges, including stage four cancer, ME, and the recent development of hepatitis, pancreatitis, and diabetes. He shares his fears of the cancer spreading to his brain and his decision to pursue medically assisted dying. Jeffery reflects on his life and the things he is proud of, including his advocacy work for ME and the grant he helped secure for ME research in Canada. He also discusses the importance of letting go and finding peace amidst grief and the support he has received from loved ones and the ME community. www.pempod.com pempodcast23@gmail.com

Daniel meets Oonagh Cousins, a research fellow studying Long Covid at Oxford University. Oonagh is also a former professional rower with team GB. We talk about her personal experience of long covid, processing chronic illness guilt and grief, and her brief engagement with the Lightning Process, a programme which claims to treat ME and Long Covid through a form of brain retraining. https://www.bbc.co.uk/news/health-69040592 Radio Episode: Mind Over Matter: https://www.bbc.co.uk/sounds/play/m001zg5q Long Covid Support website: https://www.longcovid.org/ pempod.com pempodcast23@gmail.com