Living with Long covid

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: info@thelongcovidclinic.co.uk 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

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: info@thelongcovidclinic.co.uk 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

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: info@thelongcovidclinic.co.uk 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

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: info@thelongcovidclinic.co.uk 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

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: info@thelongcovidclinic.co.uk 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

Send us a textIn this episode of the podcast I have 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. We discuss how Patrick and Peter met and how this led to their collaborations. We will delve in deeper and discuss Patricks personal journey, experience of medical gaslighting and the eventual publication of his book, The myth of primary polydipsia on a future episode. We talk in this episode about metabolic stress, research, future projects and diagnostic tools from Streasure4health. Peter explains the science behind metabolic stress and how it affects the physical and cognitive function. He explains how his previous research and scientific knowledge are supporting the potential development for clinical diagnostics of  ME/CFS, and Long Covid via blood sampling, however this is in its infancy without clinical trials etc. Peter explains the lack of funding ME/CFS has experienced for decades, prevents advancement of the development of diagnostic and medical support tools to help people living with these chronic conditions. Have a listen to learn more about this and much more from this episode. As always thank you for listening to the podcast, take care #onedayatatime Links mentioned in this episode: Streasure4health website:https://www.streasure4health.com/about-usDutch long covid foundation website: https://www.stichtinglongcovid.nl/Dutch long covid foundation donation page - (disclaimer; I have no affiliation with this foundation)  https://stichtinglongcovid.koalect.com/nl-NL/p/help-mee-doneer/stMy Links:Long Covid clinic -Dr Binita Kane & Julie Taylor; Email: info@thelongcovidclinic.co.uk 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

Send us a textThis is part 1 of a series with Robin McNelis, Clinical Specialist Cardiorespiratory physiotherapist. In this episode we discuss pacing and micro pacing, how it can be challenging to understand and to navigate. Robin explains the principles of pacing, identifying triggers, the lactate threshold and how to break down tasks and why this is important. Robin shares his own journey and how he identified his activity triggers and applied micro pacing. He explains how certain tasks can use the same energy requirement however the mechanics/movement of certain tasks can be more of a trigger spiking the heart rate and causing PEM/PESE. Robin discusses the difference between a strength issue and a fatigue issue. How it is not always understood that PEM is a physiological issue, not a muscle wasting issue.We talk about the lactate threshold and the protocol Robin has developed to test a person's lactate threshold. We will discuss this further on a future podcast episode. Have a listen to this episode of the podcast to find out so much more; if you would like to contact Robin his details can be found below. Thank you for listening to the podcast and as always #onedayatatime. Links from today's episodeWebsite:https://www.robinthephysio.co.ukhttps://twitter.com/robinthephysiohttps://www.instagram.com/robinthephysioMy Links:Long Covid clinic -Dr Binita Kane & Julie Taylor; Email: info@thelongcovidclinic.co.uk 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

Send us a textThis is part 3 of the short series of podcasts with the wonderful Rachel Jessey from Benourished. Rachel has so much knowledge and experience which is why we have discussed several interrelated topics over the 3 podcasts. In this episode we focus on disrupted sleep, the process of natural  melatonin and cortisol to support and regulate the sleep pattern and the wake pattern in correlation with the circadian rhythm. We talk about natural light vs artificial light to support people who are bed bound or light sensitive, meeting the person where they are with their chronic illness. Rachel and I discuss the benefits of introducing light during sunrise to release the natural cortisol triggering the healthy cortisol awakening response. Rachel explains how having mobile phones and wearing smart watches during the night causes sleep disruption, this is because they are all connected to the wifi and emit electromagnetic frequencies, these can destabilise electrons, she explains how if you have MCAS the electrons are already destabilised.We discuss the importance of food for energy and the cortisol levels and avoid low blood sugar levels which takes the body into "fight or flight". Have a listen to the podcast to find out so much more.Thank you so much for listening, as always take care #onedayatatimeLinks from this episode: Rachel's details:https://www.benourished.co.ukEmail: rachel@benourished.co.ukLumie lightshttps://www.lumie.com/?gad_source=1&gbraid=0AAAAAD_riileLYc6GY0VVqc7s2WyLYPw_&gclid=Cj0KCQjw0Oq2BhCCARIsAA5hubV7i1esrD8JF3Ogs3TVl4gyOlV-BxTRkyFFcMkoAVyLlWeNXBplPI4aAlHOEALw_wcBMy Links:Long Covid clinic -Dr Binita Kane & Julie Taylor; Email: info@thelongcovidclinic.co.uk 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

Send us a textFollowing on from the last episode of the podcast, as promised this is part 2 with Rachel Jessey from Benourised. We continue and expand on the short conversation we had at the end of the last episode on faecal implant, Rachel has so much knowledge and this is a really interesting topic. We also talk about the circadian rhythm and how we can reset this rhythm which supports the natural absorption of vitamin D, sleep, digestion and more. I explain what I put into practice during my recent holiday and what the impact this has had , listen to this episode of the podcast to find out more. Rachel talks about the benefit of natural light thinking about the full spectrum of light, sunrise and sunset. Rachel and I talk about the different severities of chronic conditions and how we can support and meet patients where they are in their journey, and what benefits this can have. We touch upon the benefit of red light and will have a part 3 to this podcast to discuss this in more detail. This is another podcast filled with lots of information, I really appreciate Rachel joining me. As always thank you for listening to the podcast #onedayatatime Links from this episode: Rachel’s details: https://www.benourisehed.co.uk/Email:rachel@benourished.co.ukJack Ruse https://jackkruse.com/Alexander Marakovsky https://www.longdom.org/open-access/the-industry-originated-probiotic-bacteria-role-in-covid19-60345.htmlDocumentary: Hack Your Health: The Secrets of Your Gut https://www.netflix.com/title/81436688 My Links:Long Covid clinic -Dr Binita Kane & Julie Taylor; Email: info@thelongcovidclinic.co.uk 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

Send us a textIn this episode of the podcast I talk with a fantastic returning guest Rachel Jessey.We talk about all things gut related and the microbiome, Rachel explains how these can be effected by the Circadian rhythm and also how and what we can do to help support a "healthy gut". Listen to Rachel talk about a study that supports the thought process that the circadian rhythm is an important factor for gut health. Rachel explains how important the cortisol is within this rhythm, we expand on how the Cortisol can be low in people with Long Covid/post viral conditions. We discuss symptoms challenges and how treatment that we may need has an adverse effect on the gut, but what can we do about it? Rachel shares some little nuggets that may be able help counterbalance those effects. We briefly touch on faecal implant and this will be expanded on in a later podcast!Rachel has an educational course available; HIT and MCAS Masterclass, the links for this are below. As always thank you for listening to the podcast, #onedayatatime Links from this episode: Rachel’s details: https://www.benourisehed.co.uk/Email:rachel@benourished.co.ukJack Ruse https://jackkruse.com/Alexander Marakovsky https://www.longdom.org/open-access/the-industry-originated-probiotic-bacteria-role-in-covid19-60345.htmlMy Links:Long Covid clinic -Dr Binita Kane & Julie Taylor; Email: info@thelongcovidclinic.co.uk 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