Click here for Grief Stories series!
Click here to check out our Patreon!
Episode Youtube links below or check out our podcast wherever you like to listen to podcasts!
Season 2
S2EP9: Oonagh Carr: Living with Long Covid and Cancer
(Oct 2, 2024)
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 the podcast: pempodcast23@gmail.com
S2EP8: Catherine Hale & the legacy of the Chronic Illness Inclusion Project
(Sept 2, 2024)
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.
Contact the podcast: pempodcast23@gmail.com
S2EP7: Living with ME and Cancer - a discussion
(Aug 23, 2024)
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. Apologies for the technical issues which meant Dov dropped out a little. He was still mostly with us despite not recording! If you're impacted by the matters raised in this programme, please reach out to someone close or a supportive organisation.
Contact the podcast: pempodcast23@gmail.com
S2EP6: Anneke Vliegen: Recognise ME - a memoir on medical gaslighting
(Aug 13, 2024)
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
Contact the podcast: pempodcast23@gmail.com
S2EP5: Rachel Riggs: Food Phenom, on creating a cookbook whilst living with ME
(July 15, 2024)
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’s Instagram and Facebook.
Contact the podcast: pempodcast23@gmail.com
S2EP4: Jeremy Jeffs & The Emotional Impact of Photographing People with ME
(July 1, 2024)
Apologies for initial sound problems. We had some technical difficulties at first. 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
Contact the podcast: pempodcast23@gmail.com
S2EP3: Jeffery Smith: My life with ME and Stage 4 Cancer
(June 23, 2024)
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.
Contact the podcast: pempodcast23@gmail.com www.pempod.com
S2EP2: Oonagh Cousins & the dangers of the Lightning Process
(June 12, 2024) 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.
BBC article “Long Covid course is ‘exploiting people’, says ex-GB rower”
BBC Radio Episode: “Long Covid: Mind Over Matter?”
Long Covid Support website.
Contact the podcast: pempodcast23@gmail.com www.pempod.com
S2EP1: Mama Chill & The ME Scandal
(June 4, 2024) Dan meets rapper and hip hop artist, Mama Chill, A.K.A, Stacy Hart to discuss her recently released track, 'The ME Scandal' as part of ME awareness month.
Stacy shares with great openness about her love of hip hop, as well as her ME story and how she was gaslit and neglected by medical professionals. She explains how she waited many years for diagnosis and support. After two years of waiting for a specialist clinic, it quickly became apparent to Stacy that the service did not offer her anything of benefit for her ME.
Mama Chill's website can be found here: https://www.mamachillmusic.com/
Bandcamp for the ME Scandal track download and back catalogue: https://mamachillmusic.bandcamp.com/track/the-m-e-scandal-explicit
Contact the podcast: pempodcast23@gmail.com www.pempod.com
Season 1
S1EP32: Pempod: Celebrating being a year old!
(May 28, 2024) Dov and Dan get together to review the first year of the podcast, looking back to how it all started and looking ahead to what we hope to achieve going forwards. It's been quite a year. If you have been with us since the beginning. Thanks for sticking with us. If you've just found us, welcome!
We had technical issues on this episode, so backup video was used for the first five minutes and then quality improves. Just to make it clear, Dan's ears don't stick out like in the image, for some reason AI decided that Dan needed them!
Unite to Fight website.
Contact the podcast: pempodcast23@gmail.com www.pempod.com
S1EP31: Direct Action! The Chronic Collaboration speak up, and they need us!
(May 20, 2024) Daniel meets with Steve Topple and Nicola Jeffrey from The Chronic Collaboration. Here, they discuss how they met, their own personal values around campaigning in the areas of disability and chronic illness and the need for change with regard to how campaigning is undertaken for people with ME and other intersecting chronic illness conditions.
Whilst we talk in this episode about mainly UK issues within the ME and chronic illness landscape, the issues that we discuss can often resonate universally.
The views expressed in this episode are not necessarily those of Daniel Moore, Dov Zeller or Post-Exertional Mayonnaise.
The Chronic Collaboration website.
I, Daniel Blake Wikipedia site.
Contact the podcast: pempodcast23@gmail.com www.pempod.com
S1EP30: Eliza Charley: ME and the cult-like nature of psychologisation
(May 12, 2024) Ahead of world ME day 2024 Daniel spoke to Australian Actress and Activist Eliza Charley. Eliza tells her own very personal ME story and reflects on her experiences of Graded Exercise and Brain re-training programmes and stresses how ultimately these left her more ill and questioning her sense of self. We also talked about finding language to express ourselves and the importance of recognising human worth in ourselves and others.
Contact the podcast: pempodcast23@gmail.com www.pempod.com
S1EP29: Lia Pas on Meditation, Flow States, Embroidery and Chronic Illness
(May 6, 2024) Daniel speaks in this episode to Lia Pas, a multi-disciplinary artist and composer from Saskatoon, Canada. In this wide ranging discussion we talk about whether its possible to flourish whilst living with ME.
The Hum on ko-fi.
Modern Stoicism Stoic Week site here.
Instagram (piano improvs and embroidery work).
LinkTree which has all Lia's links in it.
Contact the podcast: pempodcast23@gmail.com www.pempod.com
S1EP28: Myalgic Encephalomyelitis and a history of disbelief with Dr Nigel Speight
(Apr18, 2024) Daniel meets his childhood paediatrician, Dr Nigel Speight again after almost 30 years. We talk about the history of disbelief that comes with an ME diagnosis, his work with families who are accused of Fabricated or Induced Illness (FII) and his hopes and fears for the future.
Contact the podcast: pempodcast23@gmail.com www.pempod.com
S1EP27: Becky Holmes: Exposing online romance fraud whilst living with ME
(Apr 4, 2024) Daniel chats to Becky Holmes, a British writer who lives with ME. In her book, 'Keanu Reeves is not in love with you', Becky explores 'the murky world of online romance fraud'. Becky discusses her own experience of becoming ill with ME and how she developed her book idea. Book available here.
Contact the podcast: pempodcast23@gmail.com www.pempod.com
S1EP26: Dan and Dov, On Making Meaning whilst living with ME and chronic illness
(March 29, 2024) Dov and Dan catch up and talk about a range of issues relating to living with ME/CFS. We talk about how we go about explaining our chronic illness to others, the recent article in the Guardian by George Monbiot and the challenges of getting your hair cut!
Monbiot article.
Ivan Illich: The Right to Useful Unemployment.
Apologies for loss of video during this interview.
Contact the podcast: pempodcast23@gmail.com www.pempod.com
S1EP25: Amy Arthur: Pace Yourself
(Mar 20, 2024) Daniel is joined by award winning health science writer, Amy Arthur, who has written a book about pacing. Pace Yourself: How to have energy in an exhausting world, brings Amy's experience of living with ME into a book for anyone dealing with fatigue. We talked about the challenges of writing a book about fatigue and pacing, the importance of rest, the impact of emotional energy output, social media use and becoming unconsciously competent at managing our energy levels. Amy has seen positive benefits of pacing within her own chronic illness journey, however she is also very clear during the interview that everyone's ME and chronic illness experience is different and there isn't a one size fits all approach to pacing.
Apologies for loss of video during this interview.
Contact the podcast: pempodcast23@gmail.com www.pempod.com
S1EP24: Anna Redshaw: Blue Sunday and Tea Party for ME
(Mar 13, 2024) Daniel is joined by Anna Redshaw, creator of Blue Sunday: Tea Party for ME. Blue Sunday takes place each year during ME Awareness month. The aim is simple - to raise awareness of ME and money for ME charities, whilst having a cup of tea and a piece of cake! Anna explains how the initiative began and grew into something that has raised over £100,000 for ME organisations over the last 12 years.
Find out more about Blue Sunday on Anna's blog page, M.E. myself and I...
Anna can be found on Instagram as theslowlane.me and via facebook page.
Contact the podcast: pempodcast23@gmail.com www.pempod.com
Episode 23: Bear Lawrence: The Embleton Murders. Writing a character with ME.
(Mar 7, 2024) Bear Lawrence joins Daniel to tell us about his recent debut fiction publication: The Embleton Murders, A DCI Parrish Crime Thriller. We talk about Bear's experience of becoming ill with Myalgic Encephalomyelitis and how he was led to write about his experiences and ultimately write a crime thriller centred on a character with ME.
Bear's books can be purchased through Amazon.
Contact the podcast: pempodcast23@gmail.com www.pempod.com
Episode 22: Writing a teenage disability TV series with Sacha Kenton
(Feb 21, 2024) In this episode Daniel chats to Sacha Kenton, a screenwriter from New England living with ME who has written a dark comedy tv series called 'I Meow Back'. A proof of concept is being recorded this summer and it is hoped that a large streaming service will pick up the series to produce it going forward. Sacha is passionate about portraying disability in the mainstream.
If you would like to support the project financially please check out the fundraiser here:
**EDIT and UPDATE** As of 9th March 2024, filming is no longer going ahead this summer due to health reasons. Sacha is still hopeful that the project will go ahead in the future, however any donations made will be refunded. Thanks for your support.
Contact the podcast: pempodcast23@gmail.com www.pempod.com
Episode 21: On recent events in the ME world
(Feb 13, 2024) Dan and Dov catch up. We talk about the impact of recent deaths within the ME community, delve further into the Dragons' Den debacle and review recent episodes of the podcast and our grief series.
Beth Mazur obituary.
Steve Topple article on Dragons' Den for the Canary.
Animal Joy by Nuar Alsadir - book mentioned by Dov
pempodcast23@gmail.com
Episode 20: Hollie-Anne Brooks: Discussing Dragon's Den, Ear Seeds and ME
(Jan 27, 2024) On the 18th January an episode of Dragons Den was aired in the UK. A pitch was made to business people asking for an investment into a company which sells acupuncture ear seeds. A claim was made by the entrepreneur that the ear seeds had aided her recovery from ME. Daniel is joined by Hollie-Anne Brooks, a journalist with ME who responded quickly with an article in Digital Spy which stressed why the segment was so damaging for people with ME. We talk about the episode, holistic therapies, media coverage, the role of the BBC and the hope that some positives might come from what has been a very difficult week for the ME community.
Hollie-Anne's article in digital spy can be read here.
Hollie-Anne's Substack newsletter, Slow Living with ME can be found here.
Steve Topple article in The Canary.
Contact us: https://www.pempod.com/ pempodcast23@gmail.com
Episode 19: Crash! Judith Schossboeck & Matthias Mollner reflect on severe ME art exhibition
(Jan 11, 2024) In the summer of 2023, Judith who lives with Severe ME and her partner, Matthias, a visual and performance artist, organised an exhibition in a prestigious gallery in Vienna, Austria. Here, over a period of months, Judith and Matthais recorded video responses to Daniel's questions about ME and the creative process, and about arranging the exhibition with contributions from severe ME patients from all over the world.
Content warning: Contains swearing. Piece at the end of the episode may be emotionally draining for some to experience.
You can explore Judith and Matthias' work in more detail on their website.
Matthais' piece, Stop and Go, mentioned by Judith here.
Broken Battery Austrian TV Clip with English subtitles here.
Contact us: pempodcast23@gmail.com https://www.pempod.com/
Episode 18: Litsa Dremousis: Author, Essayist and Activist on writing and life with ME
Daniel is joined by Litsa and her dog Jordan (who she describes as an inveterate cuddler and the primary reason she's alive). Litsa shares from her 30 year history of life with ME and we explore how she's navigated a writing career: interviewing famous music artists, publishing her own deeply personal stories, and raising awareness of the reality of ME at the highest levels.
Millions missing podcast.
Susan Sontag book mentioned: Illness as Metaphor (1978)
Get in touch: pempodcast23@gmail.com https://www.pempod.com/
Episode 17: Chat with Mayonnaise: Managing the Holiday Season with ME
Michael Brooks from Chat with M.E. podcast joins Daniel for a joint episode where we talk about the challenges of getting through Christmas/Hannukah/Yule whilst living with Myalgic Encephalomyelitis. Michael's podcast can be found on Spotify here. Or wherever you listen to podcasts!
Michael mentioned the National Theatre at Home's subscription which can be found here: https://www.ntathome.com/
Get in touch: pempodcast23@gmail.com www.pempod.com
Episode 16: Jennie Jacques: ME/CFS and Vikings!
In this episode we talk to Jennie Jacques who played Queen Judith in the History Channel Vikings series. Jennie talks about her experience of becoming ill with ME/CFS in 2018 and her passion for the science around the illness. Jennie asserts that this is not a mystery illness and stresses a desire to make a difference for the ME community. We also hear about her famous missing ear and her zebra print knickers!
Jennie organises the Bake4MECFS initiative to raise money for ME charities. You can also purchase mugs through the website!
Episode 15: Patricia Fortlage: Fine art photographer chronicles her Chronic Illness and ME/CFS journey
Patricia Fortlage is an award-winning photographic long-form storyteller and fine art photographer. In this episode we talk about her project 'Lemonade' which uses dramatic, personal and sometimes comical images to express her 'love letter to the chronic illness community'. You can find Patricia's portfolio on her website.
Episode 14: Sally Doherty: Toby and the Silver Blood Witches
Sally Doherty is a children's author living with ME/CFS in England. Sally has two books published in the Toby trilogy with further work to come in the year ahead. Here Sally talks to us about her ME journey, the importance of writing characters with ME into her work and how she manages her writing alongside living with ME. Sally's books can be found on Amazon here.
Episode 12: A Girl Beyond Closed Doors with Jessica Taylor-Bearman
In this episode we talk to Jessica Taylor-Bearman who spent her teenage and young adult years living with very severe ME/CFS. We talk about her life as portrayed through her first two autobiographical books and look forward to the release of her third book, A Girl Beyond Closed Doors. A Girl Beyond Closed Doors is released on the 19th October 2023 and can be ordered here along with Jessica's previous books.
Episode 11: Chewing the Cud
Quality of Life Decisions when living with ME/CFS
In this episode Dov and Dan catch up and 'chew the cud' over a range of issues relating to life with ME. We review recent interview episodes, chat about how we can involve people with severe ME in the podcast, navigating hospital visits, talk about decision making and how this impacts quality of life and go where the conversation takes us!
Memes/articles mentioned by Dov:
“Pretty much no impairment is as simple as abled people think it is…” Full text Here
Link to pain/fatigue/symptom charts made by pwME.
Dan's music video, 'Type of Living':
UK government consultation: interim delivery plan:
Episode 10 parts 1 & 2
In this episode we talk to Sarah Boothby, who's daughter Maeve Owen died from ME in 2021. Sarah and Dan talk about Maeve and her writing.
In part 2, Sarah reads from Maeve's novel: The Alchemists; or Economic Consequences of the Peace. Here is the text for you to follow along.
Artwork for thumbnail by Amy Koller Anderson.
Episode 9: Amplifying Absence with Alison Larkman
This episode we talk to Alison Larkman, an artist living with ME in Bristol, UK. Alison is planning a significant roaming art installation project next summer called I Would Be Here If I Could. You can learn more and take part at: www.iwouldbehereificould.com
Alison's other work can be seen at: alisonlarkman.com
To listen to Michael Brooks' podcast on Decode ME, it’s episode number 7.
Episode 8: Redefining Gravity with Sally Callow
In this episode we talk to Sally Callow who is organising a significant music event in the summer of 2024 to raise awareness of ME and to fund ME research.
Episode 7: ME and Identity
In this episode Dov and Dan talk about trying to find a sense of self whilst living with ME and chronic illness.
This week’s weird symptoms are watering eyes. Dan’s eyes do a lot of watering in the evening and he doesn’t know why. Anyone else get this?
Poems are provided by Lizzy Horn and Maija Haavisto. You can listen to Maija reading her poem and talking about chronic illness here: https://poets.org/poem/shipplum
You can listen to more of Ramy's music on twitter @ramyisback Please e-mail us with any weird symptoms you'd like to share! We're also accepting poetry submissions. Also, let us know what item you love that really helps you live with chronic illness!
Episode 6: The Truth About Chronic Illness with Vlad Vexler
In this long form discussion, Dan meets Vlad Vexler, philosopher in politics and musical aesthetics to discuss his ME journey and his successful YouTube career. We talk about challenging persisting psychologisation narratives around ME, as well as Beethoven, and transhumanism.
Episode 5: Magical Thinking and Living With ME
In this episode Dov and Dan discuss the pitfalls of magical thinking when living with ME and chronic illness. This is a longer episode and covers some heavy themes, so please listen at your own pace. The clip we played by Carrie Poppy on retrospective bias and trauma hunting is part of a talk she gave to the Skeptics in the Pub channel on Mental Health Pseudoscience on Social Media and can be found here.
This episode also includes quotes from Laurie Edwards’ book In the Kingdom of the Sick: A Social History of Chronic Illness in America originally published in 2013.
Episode 4.5: Aftermath
A short video by Dan about crashy-ness after working on the Talking Time episode. It’s so important to have space here to be honest and be ourselves and acknowledge the cost of exertion.
Episode 4: Talking Time
In this Episode Dan shares a song he’s written about time and talks about his song writing process. Then Dan and Dov talk about how ME has changed and influenced their experience of time and the ways they think about it.
You can also find this episode on Spotify, Apple, and anywhere else you listen to podcasts!
Episode 3: Anna’s Ornithological Journey
In this episode Dan talks to Anna K. Wood about her bird photography (she has a book with all profits going Action for ME! This link is for US Amazon but you can get it on Amazon worldwide.) And Dan shares another ad for an Exhaustion Enterprises product!
You can also find this episode on Spotify, Apple, and anywhere else you listen to podcasts!
Episode 2: Dan’s Story
In this episode Dan tells a bit of his ME story and shares another ad for Exhaustion Enterprises.
You can also find this episode on Spotify, Apple, and anywhere else you listen to podcasts!
Episode 1: Dov’s Story
In this episode Dov shares a bit about his ME story and Dan shares a humorous ad for a product by Exhaustion Enterprises.
You can also find this episode on Spotify, Apple, and anywhere else you listen to podcasts!
Intro
In this video Dan and Dov give a little introduction to the Post-exertional Mayonnaise podcast.
You can also find this episode on Spotify, Apple, and anywhere else you listen to podcasts!