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