iiinova — where your digital self keeps evolving

Mark Faghy @profmarkfaghy.bsky.social · 22/09/2026

Our animation highlighting the key results from ERASE_LC

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Mark Faghy @profmarkfaghy.bsky.social · 22/09/2026

Our short animation to descirbe the results and findings.

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Mark Faghy @profmarkfaghy.bsky.social · 20/10/2025

We’re really happy to be sharing our work at the @longcovidweb.bsky.social symposia in the wonderful city of St John’s, Newfoundland 🇨🇦 If you’re attending the event either online or in person, please come and say hello!!

A picture of the landscape of St John’s - Newfoundland.

A poster presented at an academic conference.

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Mark Faghy @profmarkfaghy.bsky.social · 19/06/2025

And just like that we have completed ERASE in Derby A patient-led study with @derbyuni.bsky.social, University Hospitals Derby and Burton, Peninsula CTU and Exeter University to help people with #LongCovid Thanks to everyone, especially the participants who gave so much to this work.

Three people stood looking directly at a camera.

An exercise bike next to laboratory equipment.

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Mark Faghy @profmarkfaghy.bsky.social · 16/05/2025

54 Patients.. 270 infusion days.. A whole lot of tea and biscuits.. @derbyuni.bsky.social and @UHDBTrust are completing their last round of ERASE infusions today! Great teamwork from all involved, and big thanks to the participants for making the last 8 months so enjoyable.

An infusion bag hanging from a drip stand.

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Mark Faghy @profmarkfaghy.bsky.social · 12/12/2024

Thank you to everyone who has contributed to and engaged with the #12waysofERASE This initiative was led by our wonderful PPIE team and we are forever grateful for them and the work they do. The impact we are having is because of them!!

A sign displaying the words merry Christmas with a small Christmas tree.

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Mark Faghy @profmarkfaghy.bsky.social · 11/12/2024

Kindness doesn’t sound very scientific but it means a lot to our participants who have often received terrible treatment. We hope that our participants know that we care. They are never just a number to us.

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Mark Faghy @profmarkfaghy.bsky.social · 08/12/2024

We need to hear the voices of the very unwell., They can find it hard to access studies or healthcare yet they offer so much knowledge. To create research fit for participants you first have to enable PPIE to provide their input.

Image taken from a conference presentation about accessible research. Credit Colin Louw - South African San Council

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Mark Faghy @profmarkfaghy.bsky.social · 08/12/2024

#12waysofERASE Day 8 Enable PPIE to fully contribute, there is no room for tokenism. If you want to meaningfully engage with people who have lived experience, you need to enable them to participate. Ask them what they need in order to be able to participate fully.

Photo taken from a conference with two quotes related to accessible research. Photo credit - Colin Louw - South African San Council

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Mark Faghy @profmarkfaghy.bsky.social · 07/12/2024

We have now been able to use this modified approach for ERASE. The screening processes are detailed and it excludes anyone with severe PEM as we prioritise safety, but it is allowing us to assess what is happening in a controlled environment.

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Mark Faghy @profmarkfaghy.bsky.social · 07/12/2024

So before heading into this study, we spent 18 months with an international group devising a modified 2-day CPET protocol. We trialled this for safety and tolerability and only use this with participants who have been screened objectively to determine suitability.

Screenshot of a research paper - the details include the title/authors.

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Mark Faghy @profmarkfaghy.bsky.social · 06/12/2024

We’re finding ways to encourage more staff and participants to wear masks. It takes time, conversations, patience, education and empathy.

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Mark Faghy @profmarkfaghy.bsky.social · 06/12/2024

#12waysofERASE Masking Our aim at the outset of the study was for all staff and participants (who aren’t exempt for medical reasons) to wear high-quality respirator masks. It turns out it just isn’t that simple… The system is against..

An image of a sign that highlighting that masks are no longer needed.

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Mark Faghy @profmarkfaghy.bsky.social · 05/12/2024

HEPA filters are placed in all research and treatment rooms. Beds are spread out and friends and relatives are discouraged, unless participants need carers, LFTs are supplied so staff and participants can screen themselves (as well as these tests allow).

Example HEPA filter used in research spaces for ERASE.

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Mark Faghy @profmarkfaghy.bsky.social · 05/12/2024

#12waysofERASE Day 5 Infection prevention and control is more than hand washing. Wherever you stand on the ‘COVID-19 is airborne’ debate, preventing infection with anything is essential in our research. Hand washing and standing 2 metres away is not enough.

A photo of a door and trolley with posters about infection control and also masks and tests used to protect staff and patients.

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Mark Faghy @profmarkfaghy.bsky.social · 02/12/2024

3/5 We collected thousands of pages of data on the lived experience and used this to further explore the lived experience, resulting in these publications: bmjopen.bmj.com/content/13/4... link.springer.com/article/10.1... doi.org/10.1017/dmp....

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Mark Faghy @profmarkfaghy.bsky.social · 02/12/2024

#12waysofERASE #2 Listen to the #LongCOVID community; they are the experts. 1/5 The first dose of Remdesivir was given on 28/10/2024 but we started listening to patients in June 2020. We needed to understand what was going on from people who were at the heart of it.

A person's hand with an infusion line in.

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Mark Faghy @profmarkfaghy.bsky.social · 30/11/2024

People living with #LC are at the heart of our research. You are the experts in your condition & we thank you for all that you share with us. Please join us here for the first 12 days of December for the #12waysofERASE Think of it as an early festive treat.

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Mark Faghy @profmarkfaghy.bsky.social · 30/11/2024

As we approach December & our final week of remdesivir infusions for 2024, we thought it timely to share how we have used and considered LC lived experience to guide our award-winning research. Each day for the next 12 days we will share our guiding principles that make the #12waysofERASE

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Mark Faghy @profmarkfaghy.bsky.social · 15/11/2024

This afternoon @sammiemc.bsky.social from @longcovidkids.bsky.social got a deserved standing ovation from the audience after delivering an emotional but impactful presentation highlighting the impact that #longcovid has on children and their families. Inspirational!!

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Mark Faghy @profmarkfaghy.bsky.social · 15/11/2024

I’ve been to worse places!! 😍

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Mark Faghy @profmarkfaghy.bsky.social · 15/11/2024

First Bluesky Post!! 🤩 Couldn’t resist a photo with the #longcovid research hero’s at @buonsenso.bsky.social ‘s international meeting on Long COVID in Rome 🇮🇹 Excited to engage in discussions on #research and #collaboration

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