By Julie
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In 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.com
Book - Waterlogged by Tim Noakes:
https://g.co/kgs/kQ7uQuP
Medow 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.nc
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=livinglongcovidpodcast
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In 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-us
Dutch 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/st
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=livinglongcovidpodcast
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https://linktr.ee/joulest
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https://twitter.com/julieTa58407536
Facebook page:
https://www.facebook.com/livingwithlongcovid/
Instagram:
https://www.instagram.com/julie_livingwithlongcovid
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https://amzn.eu/d/9v9MP4v
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This 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 episode
Website:
https://www.robinthephysio.co.uk
https://twitter.com/robinthephysio
https://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=livinglongcovidpodcast
Linktree:
https://linktr.ee/joulest
X
https://twitter.com/julieTa58407536
Facebook page:
https://www.facebook.com/livingwithlongcovid/
Instagram:
https://www.instagram.com/julie_livingwithlongcovid
Planners:
https://amzn.eu/d/9v9MP4v
Return to work planner:
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Well being planner:
https://amzn.eu/d/a1Safxc
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This 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 #onedayatatime
Links from this episode:
Rachel's details:
https://www.benourished.co.uk
Email: [email protected]
Lumie lights
https://www.lumie.com/?gad_source=1&gbraid=0AAAAAD_riileLYc6GY0VVqc7s2WyLYPw_&gclid=Cj0KCQjw0Oq2BhCCARIsAA5hubV7i1esrD8JF3Ogs3TVl4gyOlV-BxTRkyFFcMkoAVyLlWeNXBplPI4aAlHOEALw_wcB
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=livinglongcovidpodcast
Linktree:
https://linktr.ee/joulest
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https://twitter.com/julieTa58407536
Facebook page:
https://www.facebook.com/livingwithlongcovid/
Instagram:
https://www.instagram.com/julie_livingwithlongcovid
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Return to work planner:
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Well being planner:
https://amzn.eu/d/a1Safxc
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Following 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:
[email protected]
Jack Ruse
https://jackkruse.com/
Alexander Marakovsky
https://www.longdom.org/open-access/the-industry-originated-probiotic-bacteria-role-in-covid19-60345.html
Documentary: 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: [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=livinglongcovidpodcast
Linktree:
https://linktr.ee/joulest
X
https://twitter.com/julieTa58407536
Facebook page:
https://www.facebook.com/livingwithlongcovid/
Instagram:
https://www.instagram.com/julie_livingwithlongcovid
Planners:
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Return to work planner:
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Well being planner:
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Send us a text
In 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:
[email protected]
Jack Ruse
https://jackkruse.com/
Alexander Marakovsky
https://www.longdom.org/open-access/the-industry-originated-probiotic-bacteria-role-in-covid19-60345.html
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=livinglongcovidpodcast
Linktree:
https://linktr.ee/joulest
X
https://twitter.com/julieTa58407536
Facebook page:
https://www.facebook.com/livingwithlongcovid/
Instagram:
https://www.instagram.com/julie_livingwithlongcovid
Planners:
https://amzn.eu/d/9v9MP4v
Return to work planner:
https://amzn.eu/d/1QVK8zn
Well being planner:
https://amzn.eu/d/a1Safxc
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In this episode of the podcast I am grateful to speak with Gary and Karen, they talk with me openly about their acute and Long Covid journey as a married couple.
We discuss how long covid impacts life and "the person we once was", Karen reads an impacting piece she wrote through a creative writing group titled "The goldfish bowl". I am sure this will resonate with many.
Gary and Karen have been involved with fund raising and their local community pre pandemic and although things have changed for them, their kind and supportive hearts have led them to running an online and now also face to face Long Covid support group in their local area, listen to find out more, thank you so much to both Gary and Karen for joining me #onedayatatime
Links from this episode:
Long Covid Zoom Support group is held every fortnight on a Monday morning at 10.30 am and our next meeting, after the podcast, will be on July 22nd:
To Join Zoom Meeting
https://us02web.zoom.us/j/89081011346?pwd=MDZsNUJ4WlNHVVlSZEdvTiszMFBZZz09
Meeting ID: 890 8101 1346
Passcode: 123456
Karen and Gary have said “Although we hold the group for people who live on the Fylde coast, as we know how the local clinics and referrals work, others are welcome to join”
Facebook page:
https://www.facebook.com/groups/387302115930921/
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=livinglongcovidpodcast
Linktree:
https://linktr.ee/joulest
X
https://twitter.com/julieTa58407536
Facebook page:
https://www.facebook.com/livingwithlongcovid/
Instagram:
https://www.instagram.com/julie_livingwithlongcovid
Planners:
https://amzn.eu/d/9v9MP4v
Return to work planner:
https://amzn.eu/d/1QVK8zn
Well being planner:
https://amzn.eu/d/a1Safxc
Send us a text
In this episode of the podcast, I have returning guest Rachel Hext. Rachel and I talk ahead of the UK general election, we discuss the floors, failings and ongoing issues around the pandemic, clean air and PPE.
Rachel talks about her advocacy work including being part of media interviews and Panorama, and specifically Keyworker petition. She recalls the groups day at number 10 delivering their petition, the impact of this and support from certain MP's.
We reflect ahead of the general election on the doorstep clapping at number 10 and the infamous WhatsApp messages and documents relating to Long Covid.
This podcast is filled with broad and relevant discussions, from children, clean air, teachers, retail workers, disability, gaslighting and so much more.
As always thank you for listening to the podcast #onedayatatime
Links from todays episode:
APPG on coronavirus- report Dec 2020
https://d3n8a8pro7vhmx.cloudfront.net/marchforchange/pages/326/attachments/original/1606989975/APPG_on_Coronavirus_Interim_Report_December_2020__%282%29.pdf?1606989975
Recommendations- compensation scheme
https://www.pslhub.org/learn/coronavirus-covid19/appg-on-coronavirus-long-covid-report-22-march-2022-r6432/
Breathtaking
https://www.itv.com/watch/breathtaking/10a4089?gad_source=1&gclid=CjwKCAjwydSzBhBOEiwAj0XN4O9R3xoNuA0z2Fw30GrDFjhuzxO4z-UPFtw3e4ag_77DU0rT2nQzCRoCxPAQAvD_BwE
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=livinglongcovidpodcast
Linktree:
https://linktr.ee/joulest
X
https://twitter.com/julieTa58407536
Facebook page:
https://www.facebook.com/livingwithlongcovid/
Instagram:
https://www.instagram.com/julie_livingwithlongcovid
Planners:
https://amzn.eu/d/9v9MP4v
Return to work planner:
https://amzn.eu/d/1QVK8zn
Well being planner:
https://amzn.eu/d/a1Safxc
Send us a text
In this episode of the podcast, I talk about reaching the 4 year mark of living with Long Covid.
I don't like to acknowledge this as an anniversary but I wanted to acknowledge the time that has passed, and what I have learnt along the way. It is strange how 4 years is such a long time, and in one way it has felt like the longest time ever! and the other has me questioning 'where have those years gone?'
This is a reflection of the last 4 years and I wanted to acknowledge that, and the impact it has had/has on those we love the most. I think it's important to consider how much life has changed and how hard that is sometimes, but I also wanted to acknowledge how much we learn, and evolve, the resilience and hope.
I hope you enjoy this episode of the podcast; please feel free to contact me if you would like me to discuss a particular topic or if you would like to be a guest on the podcast.
Take care, see you on the next podcast #onedayatatime.
Link from todays episode:
FEVER
https://open.spotify.com/artist/6sqc5lrCbcsjjpTAp6m6cH?si=oRvx9bDEQJC_6A8ZHmNyhA
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=livinglongcovidpodcast
Linktree:
https://linktr.ee/joulest
X
https://twitter.com/julieTa58407536
Facebook page:
https://www.facebook.com/livingwithlongcovid/
Instagram:
https://www.instagram.com/julie_livingwithlongcovid
Planners:
https://amzn.eu/d/9v9MP4v
Return to work planner:
https://amzn.eu/d/1QVK8zn
Well being planner:
https://amzn.eu/d/a1Safxc
Send us a text
On this episode of the podcast I chat to freelance writer and editor A. K. Davidson.
We talk about her book; Poetry for life and other chronic conditions, which is due out on the 6th June, the link to pre order the book can be found below.
Anna talks about her journey and experiences with acute and Long Covid, and how she now feels recovered, in a slower more thoughtful pace of life.
We discuss how Anna put pen to paper to create these short and thoughtful poems, she admits this was not something she enjoyed while studying at university, however has found a source of therapy in being able to express her feelings while living with a chronic illness.
As always thank you for listening to the podcast #onedayatatime
Links from todays episode:
https://www.instagram.com/@mondayispoetry
Anna's website:
https://www.therightword.co.uk
Links to pre order the book; Poetry for life and other chronic conditions
Waterstones:
https://www.waterstones.com/book/poetry-for-life-and-other-chronic-conditions/a-k-davidson/9781899587827
Amazon:
https://www.amazon.co.uk/Poetry-Life-Other-Chronic-Conditions/dp/1899587829/ref=sr_1_1?crid=2IL7OGIOVK6ZZ&dib=eyJ2IjoiMSJ9.J2C0eZVgv0a0rwtR60gCd3E88P4TiAp2z9zaECD41O9ljGdleXjp-0RXYmp-qdfE_hrVtoaJa3P5oBTnkO0UgE6yO81-ZbryVnrZofzOvK0TV6qc7MA9vpFHUTdGsHqLmeIiG4dbJlqQre9xOh64RBl-x8y0z8uLZzcToGydhU2KDWEmf_qq0zoB2uyUOuV6WsURQ9rekxhSTHCNt3lC2Q.1HoKBphcxfKGLJyLfQ2rqRjNUeHssui9bNJbCyvvIV4&dib_tag=se&keywords=poetry+for+life+and+other+chronic+conditions&qid=1713546303&sprefix=%2Caps%2C93&sr=8-1
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=livinglongcovidpodcast
Linktree:
https://linktr.ee/joulest
X
https://twitter.com/julieTa58407536
Facebook page:
https://www.facebook.com/livingwithlongcovid/
Instagram:
https://www.instagram.com/julie_livingwithlongcovid
Planners:
https://amzn.eu/d/9v9MP4v
Return to work planner:
https://amzn.eu/d/1QVK8zn
Well being planner:
https://amzn.eu/d/a1Safxc
The podcast currently has 103 episodes available.
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