Thanks again for making the video. I really related to the questions it asked. One thing I want to know is ‘why us?’ having long term symptoms. I was struck in the video by the variety of age, sex, ethnicity of those affected. So why us? What do we have in common?
I have been wondering whether there’s a genetic susceptibility we might have (which eg could make sense of what some posters have said- that one of their kids may be quite ill, but another not, while all in contact in same household).
A few weeks back I signed up to volunteer to take part in Genomics England’s COVID 19 study because it said it needed people with mild symptoms to compare with those admitted to hospital. I haven’t heard anything back. (They pick who they want to take part from the volunteers who apply) I said at the time on whichever thread we were on they the symptoms and testing info they asked for didn’t really fit with long term symptoms, which was a shame.
But reading this blog- www.genomicsengland.co.uk/twenty-years-on-from-sequencing-the-first-genome/ it shows they will be looking for only the most and least affected ends of the patient symptoms spectrum, so they can compare them.
So I think it’s probably unlikely that i will get through their screening but who knows.
I totally appreciate that the priority is understanding the response to COVID-19 that hospitalises and ultimately can kill people. But I also think long term COVID needs to be understood too. Not just to give us a answer of whether there is anything we could have done or should do differently in future, but also if and when the vaccine is made, to help prioritise the groups that should be offered it.
BBC today is reporting that of people who tested positive 80/% have no symptoms. So that presumably has implications both for prioritising vaccines if that ever happens, and for the fact that symptomless people are probably under represented in the tested pools because they wouldn’t be taking tests unless they work somewhere that they’re asked to test routinely, so we will know less about them.
www.bbc.co.uk/news/health-53320155
So. I’m not medical or scientific but it feels to me like we need to be arguing for long term COVID affected people like us to be looked at as a distinct group. So we need to have the opportunity to be studied if we wish to take part. Is anyone aware of studies on this?
I’d suggest ‘long term’ means anything over the fabled two weeks’ illness 
. Partly due to expectations of being ill for two weeks and then being taken out by exhaustion and brain fog, I haven’t kept any kind of detailed symptoms diary. I am really glad that some people have done this because it could be valuable for researchers one day if they are happy to share them.
I feel like officially we should all be given less strong expectations of being ill for only two weeks- it at least I want to know, does the evidence support that still being the case, or is the picture likely much more varied than that?
I also think officially everyone should be encouraged to do record keeping of their symptoms as detailed as they can, getting help to do this if needed, and I guess the tellZoe app will come into its own for this. But this thread and the Facebook groups and the Slack channels people have mentioned will definitely help with that in regards to long term affected people where the same people have regularly posted updates. The possibility of long term neuro symptoms etc just makes everyone’s record keeping more valuable in terms of predictors.