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