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: https://www.meaction.net/2024/01/10/beth-mazur-celebration-of-life-service/ Steve Topple article on Dragons' Den for the Canary: https://www.thecanary.co/opinion/2024/01/24/acu-seeds-dragons-den-2/ Animal Joy by Nuar Alsadir - book mentioned by Dov https://amzn.eu/d/1tNiBSX https:/...
Feb 13, 2024•53 min
We end our Grief Stories series with a conversation with Emily Bazalgette who set up and runs GriefSick: a project exploring and bearing witness to chronic illness grief. Emily saw the need to provide a space where chronically ill people could explore the subject of grief, and is training in grief tending. Emily shares her own story and explains some of her findings from her research into grief and how models around grief may or may not apply to the unique experience of chronic illness. We talke...
Feb 03, 2024•55 min
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 ...
Jan 27, 2024•1 hr 2 min
Daniel is joined by Florencia who lives in Scotland. In 2014 Florencia was diagnosed with a rare bone cancer called Ewing Sarcoma. Following surgery she developed Arthrofibrosis which has impacted her significantly in the years since. Florencia explains the debilitating and limiting nature of Arthrofibrosis on her life and how whilst there are possible treatments, these are inaccessible to her. Contact us for details of Ewing Sarcoma and Osteosarcoma facebook support group.
Jan 20, 2024•32 min
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 emoti...
Jan 11, 2024•54 min
Rebecca talks to Daniel from Senegal about her experience of becoming ill with ME and adjusting to a new way of life, having to adjust when being a single parent and the guilt that ME brings. Rebecca places importance of living in the present and aiming to replace negative emotions with peace, calmness, joy and kindness. We had some technical issues, so apologies for the sound quality and drift. https://www.pempod.com/ pempodcast23@gmail.com
Dec 30, 2023•39 min
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 episode: https://open.spotify.com/episode/1adUN7Qd0Quli2KEGbrvTx?si=EvhKekMJShyWkSD39RFzXw https://litsad...
Dec 21, 2023•1 hr 6 min
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 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
Dec 15, 2023•38 min
dSavannah joins us from Georgia in the US to share her life with ME and chronic illness. She shares her history, the grief over the things she has lost to ME and practical ways of managing grief on a daily basis, such as channelling anger and utilising gratitude. pempodcast23@gmail.com www.pempod.com
Dec 06, 2023•37 min
Ash lives in Sheffield in the UK. He has been living with POTs and ME for a number of years. In this episode he shares the challenges of spending the majority of his time in bed and the grief that comes with that. We discuss long distance relationships, and the benefits of having a good therapist. www.pempod.com pempodcast23@gmail.com
Nov 30, 2023•32 min
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 related zebra print knickers! Jennie organises the Bake4MECFS initiative to raise money for ME charities. You ca...
Nov 24, 2023•1 hr 7 min
Dov returns and we discuss the project so far and our own reflections on grief. We read three written contributions from Lydia, Kirstie and Pamela. We have five more Grief Stories episodes to come in the following weeks. www.pempod.com Email us at pempodcast23@gmail.com
Nov 21, 2023•49 min
Colleen has been living with ME/CFS since 1989, as she says 'it's been a while'. Colleen oversees two facebook groups: ME-ICC & Other marginalised diseases (public group) ME-ICC Info (Private group) She also writes a substack: View from the Trenches of Myalgic Encephalomyelitis which you can find here: https://colleensteckelmeiccinfo.substack.com/ Contact the podcast: pempodcast23@gmail.com https://www.pempod.com/
Nov 17, 2023•12 min
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'. If you have the energy, we'd recommend visiting Patricia's website while you listen so that you can view her lemonade project and see the images we're discussing. You can find Patricia's portfolio on her website: https://www....
Nov 10, 2023•50 min
Tamara shares her experience of becoming ill with ME/CFS and her attempts to adjust to life "as a jailed Tiger". https://www.pempod.com/ pempodcast23@gmail.com
Nov 08, 2023•21 min
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: https://amzn.eu/d/6GF2Sql Or through all good book sellers. Contact the podcast via e-mail: pempodcast23@gmail.com Or via our websit...
Nov 03, 2023•25 min
Rachel Horton is a Health Coach living in Michigan USA. She shares from her own experience of CFS as well as reflecting on her work in the health profession. Rachel referred to the writing of Victor Frankl, who's work can be found here: https://amzn.eu/d/966D42Q www.pempod.com pempodcast23@gmail.com
Oct 31, 2023•22 min
We meet Christina Baltais who uses her art to express her experiences of life with ME/CFS. Christina's art and writing can be found through her website: https://www.wordsasmedicine.com/ and https://seemeexpo.com/christina-baltais. You can learn more about bake4ME/CFS here: https://bake4mecfs.com/ Post-Exertional Mayonnaise: https://www.pempod.com/ E-mail us at pempodcast23@gmail.com
Oct 27, 2023•38 min
In this episode Rachel aka Squiggle shares her own personal CFS/ME journey and the impact of grieving through this process. You can join Rachel's online communities through discord and twitch here: Discord: https://t.co/1wZGDoAo4B Twitch: https://t.co/uSsk1Hgyy4 Contact the podcast at: pempodcast23@gmail.com Website: pempod.com
Oct 25, 2023•28 min
In this episode we hear six unique voices of individuals living with Chronic Illness: Laura, Steph, Katie, Jo, Joy and Paul. Each reflects on the topic of grief and how Chronic Illness has impacted them in different way with regard to living grief. The song, 'Nobody Knows', used throughout, is by Laura Vitale (who shares her own experience). Her music can be found here: https://www.youtube.com/@UCbS9EGciD8gKmMNCYzg7aKQ Please e-mail us with any weird symptoms or ideas for Exhaustion Enterprises ...
Oct 22, 2023•1 hr 1 min
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: https://amzn.eu/d/iAFoU9K Please e-mail us with any weird symptoms or ideas for Exhaustio...
Sep 21, 2023•1 hr 6 min
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: https://www.tumblr.com/ididit-allofit-foryou/720266316884426752 https://www.tumblr.com/mortallycrispygardener/72477372580695...
Sep 08, 2023•1 hr 8 min
In this episode Sarah Boothby reads from the unpublished novel of her daughter, Maeve Owen who died from ME in 2021. The novel is titled (as yet unpublished): The Alchemists; or Economic Consequences of the Peace. Character list and excerpts are available for viewing from www.pempod.com. If you haven't read part 1, we'd suggest you start there! Artwork for the thumbnail by Amy Koller Anderson. Please e-mail us with any weird symptoms or ideas for Exhaustion Enterprises you'd like to share! We're...
Sep 03, 2023•1 hr 8 min
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. Artwork for thumbnail by Amy Koller Anderson. Please e-mail us with any weird symptoms or ideas for Exhaustion Enterprises 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 il...
Sep 03, 2023•38 min
In 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: https://www.iwouldbehereificould.com/ Alison's other work can be seen at: www.Alisonlarkman.com To listen to Michael Brooks' podcast on Decode ME, search for Chat with M.E. podcast with your podcast provider. The Decode ME episode is number 7. Dov will be back with ...
Aug 25, 2023•48 min
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. You can learn more and get involved at: redefininggravity.co.uk Follow ME Foggy Dog at: www.mefoggydog.org 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! Email us at pempodcast23@gmail.com Twitter: @pe...
Aug 17, 2023•58 min
In this episode Dov and Dan talk about trying to find a sense of self whilst living with ME and chronic illness. Apologies for the background noise. Will try and sort for next time! 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 ...
Aug 04, 2023•1 hr 8 min
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. You can find Vlad's YouTube Channels here: ME diary: / @ucf3qsb15b2_wzbx... Main channel: / @vladvexler Chat channel: / @ucn7xhziw6eugsux... Philosophy channel: / @ucl2ddwc5glhezu2... Vlad's favourite Beethoven piece via S...
Jul 21, 2023•1 hr 24 min
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: https://youtu.be/urq3GT2coDw Please e-mail us with any weird symptoms you'd like to share! W...
Jul 14, 2023•1 hr 7 min
We talk about time and how we process time and manage it while living with ME. Also, Dov interviews Dan about his creative songwriting process. 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! Email us at pempodcast23@gmail.com Twitter: @pempodcast23 Dov can be found on Instagram: dovshlomo Art logo design by Lu Baker: www.lubakerart.com Lu's Instagram: luba...
Jun 16, 2023•59 min
