Defining Long COVID symptoms
Terms like "fatigue", "brain fog" or "muscle weakness" are often used in surveys to monitor how many people are experiencing different symptoms during the COVID-19 outbreak. But we understand symptoms mean different things to different people.
When carrying out research to understand (and define) a new condition such as Long COVID, it's important that as many views are captured and the different experiences are explored, including where there are similarities and differences with other conditions.
That's why, researchers from Imperial College London are carrying out this citizen science-style "challenge" as part of Imperial's REACT-Long Covid (REACT-LC) study, so those affected by ongoing symptoms are involved in shaping the research going forwards.
What will I be asked to do?
- Post a written or visual description on our 'challenge' page of any ongoing/recurrent/long-term symptom you have experienced after or because of COVID-19, e.g. "For me, X feels like..." and can relate affects to breathing or sensation of chest, energy levels, sleep, skin, senses (smell, taste, sight, balance etc), mind etc
- You can use words and/or a picture or drawing of your choosing/design
- We’re particularly keen to hear about the symptoms you feel aren't well described, or even those that overlap with other health conditions or remain unexplained
- If another post perfectly describes something you’ve experienced, you can 'Like' it to let us know you agree
When and where?
All online, respond any time. Open all year.
Will I get anything for taking part?
- Your input will help us improve the way we design our surveys, inform what we explore in our interviews, as well as give us (and others viewing the page) broader insight and understanding of what ongoing COVID symptoms actually mean to those affected.
- We also hope this challenge will spark a bigger, more collaborative campaign to visualise, understand and define the symptoms and/or effects of COVID-19
How do I take part?
To read the submissions so far, click this link to visit the 'Defining Long COVID symptoms' challenge page
If you wish to take part and submit your own ideas, you will first need to be signed in as a VOICE member or open a temporary guest account.
- Firstly, click the 'Take me to the challenge' button on this page. You'll find it at the top or down the side panel on the right.
- If you are already a VOICE member, you will be asked to sign-in, if not already done so. If you are not yet a member, you will have the option to either sign-up as a member (it's free) or continue as a guest by providing your email address and a temporary username.
- Once signed in, you'll then be directed to the 'Challenge' page where you can click the 'Share your idea' to share what COVID/Long COVID symptoms mean to you.
Things to note:
- VOICE allows you to use an alias username so that you can share your thoughts anonymously, if you wish.
- By contributing to this challenge you agree for your comments or images to being publicly available and may be used by us and others as part of promoting the research or sharing experiences of Long COVID. We will credit content to the username shown
- If you change your mind about this or have any questions, please email: [email protected] or [email protected]
Want to receive updates, news and invites relating to our Long COVID research?
Please join the REACT: COVID-19 Community Network on VOICE to receive news updates and invites to events and involvement opportunities relating to Imperial’s ongoing COVID-19 and Long COVID research, as part of the REACT research programme. This will include and news or updates about this 'Defining Long COVID' challenge.
Defining Long COVID symptoms Discussion
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