ERASE-LC

Account for the ERASE-LC Trial:

CI: @drmark_faghy and Tom B.

Trial Registration: NCT05911906

Website: TBC

Sponsor: @Derbyuni

CTU: @Pen_CTU

[ERASE-LC @ERASE_LC]

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!

[ERASE-LC @ERASE_LC]

This process takes a long time. This update is therefore to let all of you in the community know that we are still here and continuing to work hard in our bid to help the many millions of people living with Long Covid.

[ERASE-LC @ERASE_LC]

We are sorry for the silence BUT we have an update!

The ERASE-LC trial is making progress. All participants have now received their infusions of remdesivir and completed their post-treatment testing.

[ERASE-LC @ERASE_LC]

Once the results have been fully analysed and then checked by other independent researchers (a process called peer review) we will let you know the outcome.

[ERASE-LC @ERASE_LC]

Well done Team Derby.. a great day for the project and everyone involved!!

[Mark Faghy @DrMark_Faghy]

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.

[ERASE-LC @ERASE_LC]

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.

[ERASE-LC @ERASE_LC]

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

[ERASE-LC @ERASE_LC]

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!!

[ERASE-LC @ERASE_LC]

#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

[ERASE-LC @ERASE_LC]

#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.

[ERASE-LC @ERASE_LC]

We will not give up!

And for those of us in the team living with this truly life-altering disease, we will always know just how important it is that some people never give up on us.

[ERASE-LC @ERASE_LC]

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.

[ERASE-LC @ERASE_LC]

#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.

[ERASE-LC @ERASE_LC]

Many are grieving what they have lost, careers, families, homes and of course their health.

Never lose sight of why you are doing your research (and it should never be for professional advancement or glory).

[ERASE-LC @ERASE_LC]

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.

[ERASE-LC @ERASE_LC]

#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?

[ERASE-LC @ERASE_LC]

‘Do no harm’ always has to be at the front of our thoughts.

We shouldn’t really have to say it as it should underpin all research and patient care.
But we think it needs saying.

[ERASE-LC @ERASE_LC]

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.

[ERASE-LC @ERASE_LC]

#12waysofERASE

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.

[Mark Faghy @DrMark_Faghy]

We know that one size doesn't fit all...

#12waysofERASE

[ERASE-LC @ERASE_LC]

Pacing is a helpful word for people living with PEM but if you follow it with the word ‘up’ you are basically telling them to increase what they are doing.

Someone’s pacing, to be successful, needs to vary from day to day and be responsive to life.