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On 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
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The 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=livinglongcovidpodcast

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I 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.com

YouTube 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/bOk9J0

Wirth’s ME/CFS pill ‘Mitodicure’: https://www.mitodicure.com

The 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=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