Top Tweets for #12waysofERASE
#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
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!!
#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.
"Kindness and compassion underpin our #LongCOVID research but this should underpin ALL research."
Most of these #12WaysOfERASE posts have made me cry a little.
I'm hoping that this wisdom will be a small shoot that will grow to be a mighty tree ❤️👇
#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.
#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.
#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
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?
‘Boom and bust’ is another example. Very few patients would describe the activity that caused their PEM as a ‘boom’. It can imply they are behaving irresponsibly. They may have simply laughed for a few minutes or sat up and cleaned their teeth.
#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.
We know that one size doesn't fit all...
#12waysofERASE
The people at the heart of the research are the beneficiaries... they belong at the table and should have their voices heard!
#12waysofERASE
#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
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.
Long COVID brings a 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.
We know that one size doesn't fit all...
#12waysofERASE
#12waysofERASE
If there isn’t an appropriate way to do something, create a different way.
Long COVID brings a 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
If there isn’t an appropriate way to do something, create a different way.
Long COVID brings a 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 us..
The topic of masking for day 6... A contentious topic but an important part of a broader IPC plan for ERASE.
#12waysofERASE
#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 us..
#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 us..
#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...
There is no room for complacency. Knowledge and understanding are never static.
There will always be more to learn and understand and it is essential that we continue to search for the answers.
These daily snippets of wisdom about the process of researching, working with and treating people with Long Covid are brilliant.
Please read, share and follow ❤️👇
#12WaysOfERASE
#12waysofERASE
Day 4
You should never stop trying to be better...
There is no room for complacency. Knowledge and understanding are never static.
There will always be more to learn and understand and it is essential that we continue to search for the answers.
#12waysofERASE
Day 4
You should never stop trying to be better...
There is no room for complacency. Knowledge and understanding are never static.
There will always be more to learn and understand and it is essential that we continue to search for the answers.
Day 3
#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.
Participants should not have to buy their own PPE to access our study or pay to provide it for staff (as we know many of you have to do just to access healthcare).
The financial burden of #LongCOVID is very real.
We should not be adding to that.
Day 3
#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.
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