Living with Long covid

• Karen,Emma and Oonagh talk about their campaign group #ThereForME

  Send us a textOn this episode of the podcast I am fortunate to be joined by Karen, Emma and Oonagh to discuss their campaign group #ThereForME. They came together to form #ThereForME following personal experiences of either living with ME, Long Covid and/or caring for partners with severe ME. They are a small group who are making a huge impact. We talk about their roles within the campaign group, how they came together and what they have done in such a short space of time. The group talk me through the campaign #FundThePlan which is raising awareness on a new delivery plan for ME that has been a work in progress for around 3 years for ME, looking at research, attitude and education and living with ME. The government has stated there are no plans to fund the plan, which will have a continuing impact around the lack of resources for ME. The  #FundThePlan is something everyone can get involved with, by creating a short video asking Ashley Dalton and Wes Streeting to make a difference and  #FundThePlan. If you are living with the condition (and are able), caring for someone or a supporter/advocate please take the time to create your #FundThePlan video. The templates and information can be found across the #ThereForME social media platforms the links  can be found below, and if you aren't already please support and follow the group on social media. To find out more have a listen to this episode, thank you for listening to the podcast, please share with anyone you feel it may help. As always take care #onedayatatime My Links:Long Covid clinic -Dr Binita Kane & Julie Taylor; Email: [email protected] for more information Episode sponsor; Turnto - This is a brilliant app, a one stop shop to support anyone living with, caring for or supporting and additionally professionals working with people living with Long Covid and or MECFS - please mention The Long Covid podcast n the "how did you hear about us" section, thank you https://turnto.ai/download?utm_source=link&utm_medium=share&utm_campaign=livinglongcovidpodcastLinktree:https://linktr.ee/joulestXhttps://twitter.com/julieTa58407536Facebook page:https://www.facebook.com/livingwithlongcovid/Instagram:https://www.instagram.com/julie_livingwithlongcovidPlanners:https://amzn.eu/d/9v9MP4vReturn to work planner:https://amzn.eu/d/1QVK8zn Well being planner:https://amzn.eu/d/a1Safxc

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  40:45
• Special episode; Kerry Davies joins me for a chat on International long covid awareness day

  Send us a textThe 15th March 2025 marks International long covid awareness day, this year is also the five year milestone of the pandemic. For many it will also be reaching their personal 5th year of living with long covid. Kerry and I wanted to mark this milestone with a very organic chat about where we are now, what we would like people to know and understand. We reflect on our personal journey's, the millions of people (of all ages) whose lives have been affected and changed. The losses and the gains in the form of a large and supportive community, we discuss how in the darkness and uncertainty the ME community reached out to let us know we are not alone. We discuss lack of understanding, the continued challenges however we also wanted to celebrate the amazing professors, scientists, consultants, doctors, advocates, charities and support groups, and our families and friends that are by our sides. We discuss the impact chronic conditions have on those we love. We celebrate and thank everyone who stands in solidarity and while this is not an anniversary or something any of us wanted, it is an opportunity to shout louder, have our voices heard and make sure none of us feel alone. #solidarity #onedayatatime My Links:Long Covid clinic -Dr Binita Kane & Julie Taylor; Email: [email protected] for more information Episode sponsor; Turnto - This is a brilliant app, a one stop shop to support anyone living with, caring for or supporting and additionally professionals working with people living with Long Covid and or MECFS - please mention The Long Covid podcast n the "how did you hear about us" section, thank you https://turnto.ai/download?utm_source=link&utm_medium=share&utm_campaign=livinglongcovidpodcastLinktree:https://linktr.ee/joulestXhttps://twitter.com/julieTa58407536Facebook page:https://www.facebook.com/livingwithlongcovid/Instagram:https://www.instagram.com/julie_livingwithlongcovidPlanners:https://amzn.eu/d/9v9MP4vReturn to work planner:https://amzn.eu/d/1QVK8zn Well being planner:https://amzn.eu/d/a1Safxc

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  39:05
• Patrick Ussher book release; Understanding ME/CFS & strategies for healing

  Send us a textI am so pleased to be back recording the podcast, thank you for your continued support. I am pleased to have returning guest Patrick Ussher join me on this episode. Patrick Ussher has had ME/CFS for 7 years. He has written a book ‘Understanding ME/CFS & Strategies for Healing’. which is now available as an audible, ebook or paperback copy. Click on the link below to find out more. In  the book he communicates some of the latest, most exciting ME/CFS research as well as strategies he has used to improve his quality of life. The book is laid out with a broad audience in mind, inclusive of those living with ME/CFS and Long covid, their families and/or carers and medical professionals. It contains links to the relevant research and chapter summaries which are really helpful. In this episode of the podcast we discuss his book and go into more detail around the section of the book covering (PEM) post exertional malaise, and the research findings of Professor Klaus Wirth and Professor Carmen Scheibenbogen. This is an interesting conversation with light bulb moments. We discuss how PEM is a nemesis for so many living with these conditions, and what the research findings suggest is happening at cellular level. We touch on pacing in the absence of medical treatment and  how important, although extremely challenging pacing is to avoid PEM. Patrick, talks about mitodicure, a potential medication to treat patients with post exertional malaise. This is in its infancy, in terms of requiring funding and clinical trials, more information is available via the link in the show notes. To find out more about this and lots more have a listen to this episode. Links from this episode: More about Patrick: https://www.patrickussher.comYouTube channel: https://www.youtube.com/@me-cfs-strategiesforhealing To see the main options for buying Patrick’s book in ebook, paperback or audiobook:  https://books2read.com/u/bOk9J0Wirth’s ME/CFS pill ‘Mitodicure’: https://www.mitodicure.comThe first Wirth and Scheibenbogen paper on a ‘Unifying Hypothesis for ME/CFS': My Links:Long Covid clinic -Dr Binita Kane & Julie Taylor; Email: [email protected] for more information Episode sponsor; Turnto - This is a brilliant app, a one stop shop to support anyone living with, caring for or supporting and additionally professionals working with people living with Long Covid and or MECFS - please mention The Long Covid podcast n the "how did you hear about us" section, thank you https://turnto.ai/download?utm_source=link&utm_medium=share&utm_campaign=livinglongcovidpodcastLinktree:https://linktr.ee/joulestXhttps://twitter.com/julieTa58407536Facebook page:https://www.facebook.com/livingwithlongcovid/Instagram:https://www.instagram.com/julie_livingwithlongcovidPlanners:https://amzn.eu/d/9v9MP4vReturn to work planner:https://amzn.eu/d/1QVK8zn Well being planner:https://amzn.eu/d/a1Safxc

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  40:22
• Episode 2 with Robin McNelis; Clinical specialist cardiorespiratory physiotherapist, the principles of pacing and understanding energy use, PEM/PESE and the lactate threshold

  Send us a textIn this episode of the podcast, Robin McNelis joins me again for part 2 of a series where we aim to cover a variety of topics which will support pacing/micropacing and much more. In this episode we discuss the exertion types and what uses energy, we recap on what pacing is and why it is important when you live with a chronic condition such as ME and long covid. Robin discusses the principles of pacing and the varying forms of pacing, we discuss listening to your body and the challenges of this with PEM/PESE. Robin explains how monitoring your HR/HRV is important, what is available to monitor this data and how to understand what level to set your alerts at to remain within the anaerobic threshold. We discuss the lactate threshold and Robin explains the zones of this threshold and how important it is to remain within the lactate threshold, especially those with PEM. Robin advises how the lactate threshold can be tested at home, and clinical testing. We additionally discuss how those with Orthostatic intolerance, PoTs can find it challenging to maintain their heart rate within their threshold due to heart rate spikes. Robin gives some great advice on how to support this and lots of other amazing information and advice throughout this podcast, so grab a cuppa and have a listen. As always thank you for listening to the podcast, take care #onedayatatimeLinks from today's episodeWebsite:https://www.robinthephysio.co.ukhttps://twitter.com/robinthephysiohttps://www.instagram.com/robinthephysio My Links:Long Covid clinic -Dr Binita Kane & Julie Taylor; Email: [email protected] for more information Episode sponsor; Turnto - This is a brilliant app, a one stop shop to support anyone living with, caring for or supporting and additionally professionals working with people living with Long Covid and or MECFS - please mention The Long Covid podcast n the "how did you hear about us" section, thank you https://turnto.ai/download?utm_source=link&utm_medium=share&utm_campaign=livinglongcovidpodcastLinktree:https://linktr.ee/joulestXhttps://twitter.com/julieTa58407536Facebook page:https://www.facebook.com/livingwithlongcovid/Instagram:https://www.instagram.com/julie_livingwithlongcovidPlanners:https://amzn.eu/d/9v9MP4vReturn to work planner:https://amzn.eu/d/1QVK8zn Well being planner:https://amzn.eu/d/a1Safxc

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  42:22
• Returning guests; Patrick Ussher and Peter Deen; The myth of primary polydipsia, challenging medical gaslighting with science

  Send us a textIn this episode I have returning guests; Patrick Ussher a person living with ME/CFS for the last 6 years, he has a Youtube channel "Understanding ME/CFS" in which he talks about research into ME/CFS and Long Covid in an accessible way. He has written a medical hypothesis on the potential cause of excessive thirst following being misdiagnosed with psychogenic water drinking. I also have Peter Deen, whom is the founder of a start up company Streasure4health, Streasure4Health is developing an objective diagnosis and scalable diagnostic sensor for LongCovid and ME/CFS, which are rooted in their underlying mechanisms. It has developed an innovative approach to clinically map metabolic stress for the first time. Following on from the last podcast we discuss Patrick's personal journey with ME/CFS, how he had excessive thirst and would drink up to 20 litres of fluid per day. Patrick explains how this led to medical gaslighting following a hospital admission and subsequently his journey to his book "The myth of primary polydipsia" which is free to download, press on the link below for your copy. Peter subsequently contacted Patrick and they have collaborated since. Listen to this episode of the podcast to find out more, and check out the links below. As always thank you for listening to the podcast, take care #onedayatatime. Links from this episode: More information on Patrick Ussher:https://www.patrickussher.com Patrick Youtube channel; Understanding ME/CFS:https://www.youtube.com/channel/UC8p46sk36RDASjeGHhF9G1A/Free book to download - The Myth of primary Polydipsia by Patrick Ussher:https://www.themythofprimary.polydipsia.comBook - Waterlogged by Tim Noakes: https://g.co/kgs/kQ7uQuPMedow study on Oral Rehydration Solution in POTS as effective as saline IV: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6815702/Downregulation of Renin-Angiotensin-Aldosterone System (salt retention hormonal network) in ME/CFS: https://pubmed.ncMy Links:Long Covid clinic -Dr Binita Kane & Julie Taylor; Email: [email protected] for more information Episode sponsor; Turnto - This is a brilliant app, a one stop shop to support anyone living with, caring for or supporting and additionally professionals working with people living with Long Covid and or MECFS - please mention The Long Covid podcast n the "how did you hear about us" section, thank you https://turnto.ai/download?utm_source=link&utm_medium=share&utm_campaign=livinglongcovidpodcastLinktree:https://linktr.ee/joulestXhttps://twitter.com/julieTa58407536Facebook page:https://www.facebook.com/livingwithlongcovid/Instagram:https://www.instagram.com/julie_livingwithlongcovidPlanners:https://amzn.eu/d/9v9MP4vReturn to work planner:https://amzn.eu/d/1QVK8zn Well being planner:https://amzn.eu/d/a1Safxc

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  41:32

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