Post-Exertional Mayonnaise

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.

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

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.

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.

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.

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.

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.

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.

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 Which Daniel Tries a Smoothie and Learns that GET was sold for $20,000: