Post-Exertional Mayonnaise

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:

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!

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!

Content Warning: Discussion includes end of life care and Medical Assistance In Dying.

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.