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!!

Sorry for the silence: The ERASE-LC trial is making steady progress. All participants have now received their infusions of remdesivir and completed their post-treatment testing.

So good to have you join us for the day!! Lots of great discussions and ideas.. now to find ways to implement them!

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.

Exercise-induced Changes in Microclotting and Cytokine Levels Point to Vascular Injury and Inflammation in People with #LongCOVID. Important preprint work from our Team Clots: @profmarkfaghy.bsky.social and @resiapretorius.bsky.social 👏👏 www.researchsquare.com/article/rs-6...

Our global effort to raise the urgency of research into Long Covid in children published in The ERJ ⬇️ Huge thanks to @buonsenso.bsky.social and @laelyonker.bsky.social for leading on this. #longcovidkids @longcovidkids.bsky.social publications.ersnet.org/content/erj/...

We’re recruiting a fixed term (3 years) researcher in clinical exercise science and Long COVID. If you want to join a team that is at the forefront of the pathophysiology/lived experience research then please get in touch. Please share with your network! www.derby.ac.uk/jobs/current...

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.

Delphi consensus paper on #LongCovid link.springer.com/article/10.1...

University of Derby: 'University embarks on ground-breaking long Covid research project' 'The £1.25 million trial, which is the first of its kind in the UK, is exploring whether anti-viral medications can be used as an effective treatment option...' www.marketingderby.co.uk/news/univers...

#LongCovid @profmarkfaghy.bsky.social @lindsayskipper.bsky.social @sarahbarleymc.bsky.social @longcovidadvoc.com @mikster-derby.bsky.social @michaeltikus.bsky.social

Access has been a “postcode lottery”, says @profmarkfaghy.bsky.social, an associate professor in respiratory physiology at @derbyuni.bsky.social and policy advisor for @longcovidkids.bsky.social He adds that children and young people are at a “disadvantage from the outset”.

An insight into our #LongCovid #research at the @DerbyUni www.youtube.com/watch?v=pSwH...

Thank you @profmarkfaghy.bsky.social and your brilliant team 🙌 You might be interested in this, @jonathandaviesmp.bsky.social #LongCovid #Derbyshire

More media coverage of our #LongCovid research.. Thanks to Ryan for his time and energy in helping with this piece! www.bbc.co.uk/news/article...

Please if you haven't already consider signing this petition to urge important investment in paediatric research in #longcovid Without research, we cannot progress the mechanistic knowledge needed to develop diagnostic tests and treatments! you.38degrees.org.uk/petitions/in...

Scientists are investigating whether anti-viral drugs could provide an effective treatment for LongCovid “It is vital research for the people who are living with LongCovid now but also the people who will go on to develop LC in the future” @profmarkfaghy.bsky.social t.co/kfLzV0B0fy

Ondine was a big voice and a strong advocate for #Longcovid and will be sorely missed by everyone. I shared many lovely moments with Ondine as part of our involvement in the @covidinquiryuk I am gutted and lost for words! We will continue to advocate with Ondine looking down!

Here is our piece that was featured on @itvnews.bsky.social yesterday, which talks about #longcovid research. www.itv.com/news/2025-03...

What a fine piece of academic literature this is from Amy Proal @resiapretorius.bsky.social and others: www.thelancet.com/journals/lan... Science overload that paves the way for the development of future diagnostic investigations and potential treatments for LC!

Decided to get back on the socials after a short break due to personal issues where my time and attention was needed elsewhere.. we've still been working hard but just not public facing but I'm back and we have some important updates and information to share over the course of the next few weeks!

#12waysofERASE Day 12 We have and continue to have knockbacks as a team… funding refusals, paper rejections and many more! But we are trying to research a condition which some of the world is trying to pretend does not exist and in a life where infections are still spreading in great volumes.

#12waysofERASE 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.

#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?

#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.

#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.

#12waysofERASE If there isn’t an appropriate way to do something, create a different way. #LongCOVID brings a very real risk of provoking PEM/PESE. Whilst we want to understand what is going on physiologically, we know that conducting full/traditional CPETs carries an inherent risk.

#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..

#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.

#12waysofERASE Day 4 You should never stop trying to be better at what you’re doing. There is no room for complacency. Knowledge and understanding are never static. There will always be more to learn and understand and we must continue to search for the answers.

#12waysofERASE Budgets should include payment for PPIE & costs of participants’ requirements. People living with chronic illness are often expected to provide PPIE to a study for free. Their knowledge is invaluable yet somehow no financial value is attached to it.

Newbie question - how do you add/get added to starter packs? There are some amazing packs around that I think we can add value too!

#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.

#12waysofERASE #1 We adapt our research to the participants rather than participants being made to adapt to our research. We design our environment to be quiet with adjustable lighting and temperature. Easy accessibility with parking and wheelchair availability is essential.

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

Thanks Tern.. we’re planning some activity to show people what we’ve been up to.. with some little teasers thrown in for the season too… 🤩

I've made a Covid conscious starter pack called "Salting the Vibes" - voices on advocacy and/or science 🧬 go.bsky.app/5871Mhv

After a very busy and positive start to ERASE, we are now ready to increase study activity.. If you live in the local area and would be interested, pleas click the link below and someone from the team will be in touch! #longcovid #Research www.plymouth.ac.uk/research/pen...

I had to speak directly after this, was in absolute pieces! 😭 What an incredible advocate she is 👏🏽👏🏽👏🏽

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!!

I’ve been to worse places!! 😍

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