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In 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 #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: 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=livinglongcovidpodcast

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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: 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=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:
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Send us a text

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: 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=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