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Happy to be sharing our work and philosophy of being patient driven at the @LongCOVIDWebCA symposium in St John’s Newfoundland 🇨🇦
If you’re attending please come and say hello!
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Well done Team Derby.. a great day for the project and everyone involved!!
19 Jun 2025
And just like that we have completed the last patient visit in Derby for @ERASE_LC
A patient-led study with @DerbyUni @UHDBTrust @Pen_CTU and @UniofExeter seeking to help people with #LongCovid
Thanks to everyone, especially the participants who gave so much to this work.
ALT Three people stood looking directly at the camera.
ALT An exercise bike next to laboratory equipment.
ALT A sign on a door.
ALT A medicine in a infusion bag hanging from a drip stand.
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54 Patients..
270 infusion days..
A whole lot of tea and biscuits..
@DerbyUni 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.
ALT An infusion bag, hanging from a drip stand.
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This week our first participants at @UniofExeter are receiving their IMP!
Well done to @DocStrain and the team!!
@Pen_CTU @DerbyUni @LindsaySkipper @Prof_Ian_M
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#12waysofERASE
DAY 12
Never give up
We have and continue to have knockbacks as a team, funding refusals, paper rejections and more!
But we are researching a condition which some try to pretend does not exist and in a life where infections are still spreading in great volumes
#12waysofERASE
Day 11
Kindness and compassion underpin our #LongCOVID research but this should underpin ALL research.
Participants are not numbers. They are people who carry scars which reach beyond those caused by COVID-19.
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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!!
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#12waysofERASE
Day 11
Kindness and compassion underpin our #LongCOVID research but this should underpin ALL research.
Participants are not numbers. They are people who carry scars which reach beyond those caused by COVID-19.
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#12waysofERASE
Do no harm.
Whether it is the words you choose; the protocol you develop; the treatment you administer; or the infection prevention and control measures you select, the aim should always be ‘do no harm’.
Sounds pretty obvious, right?
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With ERASE we have taken great care and attention to scrutinize all assessments to make sure we create a safe and inclusive research environment. With PROMS we review each one individually to ascertain the learning for the study but also the impact it can have on participants.
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Words Matter
Everything we say can have downstream consequences. Using the wrong words can have lasting effects for years on a personal and wider level.
The #LongCOVID community have shared experiences where others simply haven’t understood this.
7 Dec 2024
We know that one size doesn't fit all...
#12waysofERASE
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So the words you choose and how you use them matter.
We try hard to get it right and our PPIE reps have provided valuable insight into our patient facing and study training materials.
No doubt we will get it wrong sometimes but we will correct ourselves if that is the case.
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