Long COVID: Turning anecdotes into evidence

Dr Athena Akrami, neuroscientist and Group Leader at Sainsbury Wellcome Centre, UCL, shares her personal journey with long-COVID and how she came together with other researchers to develop the Patient-Led Research Collaborative to collect data on those with COVID-19 prolonged recoveries. This is the most comprehensive study of 'long-haulers' to date and the results have been published in the Lancet's EClinicalMedicine.

[@shirlagonzales4476]

After a very long time I am feeling good. I even have been exposed to the delta. Sore throat, slight fever., for only one day. Recovered and I feel even better now.

[@muhammadalieesaa3379]

Was you vaccinated?

[@kpsingh7833]

How many time you fully recovered???

[@bell4textu973]

My friend developed exactly these symptoms but he got it from another virus - monoucleoses. He`s still very sick over 3 decades later, with severe neurological symptoms. There must be a connection to all post viral infection desises. It does not matter which virus that make you so sick, because the outcome is the the same with disability of at least 50 per cent of those affected.

[@Subspace._tripmine]

Welcome to my life long world and battle. This sounds so familiar to me because I have lived like this since I was a child (1970s). So either I was vaccine injured with some virus when I was a child or I have the after effects of some virus that infected my body. I have been disabled for so many decades. I'm over 50 now. I have long medical records, surgery histories, fatigue, reproductive system issues, insulin resistance, allergies etc. And no one has definite answers to help me find a cure. It's just always another treatment. Now I'm undergoing heart evaluations. So...I say welcome to all of the new members of the mystery illness group. But wait!!! First, you will be told you may need psychological help. (Even though your labs prove you have something going on.) The only psychological issues are that your patience is tried and pushed to the limit, living as a human just trying to live a "normal" life yet trying to figure out what's going on. I wouldn't wish this on anyone. It's the only club of which I wish there were less members.

[@spyked4978]

So what causes long covid? Is it true that the viral debris like the spike proteins left in the system? If so, then my question is, will it just go out from our body in due time?

[@chuteboxegod]

So how do you get better? I have a $20,000 reward if anyone can cure me but so far its all been quackery.

[@leslieboles6439]

I keep telling my Dr that I think I have long Covid. Her answer is to suggest psychological therapy. Rediculous.