Day 41 of lingering #covid19 symptoms – the day is almost at a close, I’ve discussed my negative PCR swab result with my NHS GP today as well as the test provider’s GP (Qured) and now thinking about next steps in my quest for insights 1/n

The day has been a wipeout in terms of energy levels. I’ve felt exhausted right up to early evening. How bizarre that walking 500+ steps in the garden can lead to so much exhaustion for the rest of the day https://twitter.com/ManeeshJuneja/status/1262706261751148547?s=20 2/n

Had weekly catch up with my NHS GP. I had emailed her a copy of my Negative test result. She thought it was highly unlikely that I would have tested positive at this point in my journey. She was surprised that the ED last week didn’t check me out regarding my extreme fatigue 3/n

My GP still hasn’t received any information from the ED visit that took place 6 days ago, she is curious to know exactly what they checked in my blood test. Hopefully, that information will come through to her before next week’s check-in call! 4/n

She doesn’t believe I’m contagious at this stage of the illness, but said that there is a small chance I might be. Despite my negative result, based upon what she’s observing with other patients, she still believes I have had covid-19 5/n

In terms of next steps, she is fine if I have a private test to check for antibodies, to see if I’ve had covid-19, but also pointed out that not everyone generates enough antibodies for the test to come back positive. She was trying to manage my expectations 6/n

Once again, the message was to rest, continue with “pacing” my activities and to remain vigilant should my condition worsen. She was happy that there are moments of progress in my journey the last few days 7/n

Later today, I had my phone appointment with a GP from Qured to call me to go through the results. It was part of the package I paid for. Not a great experience and highlights how private sector isn’t always better than the NHS 8/n

The phone call was scheduled for 4.30pm. At 5pm, nobody had called me, so I emailed at 5.05pm to ask why a GP had not called me as arranged. The GP called me at 5.14pm. This is not the first time since Thursday, that I’ve had to chase this private provider to get something 9/n

It was a different GP from the pre test phone call on Thursday but that GP on Thursday assured me that he had put notes on the system so any of their GPs could help with the post test phone call 10/n

Today’s Qured GP started off by asking me all the questions that the Qured GP had asked before my test, on Thursday. When did symptoms begin, do I smoke, do I have any allergies etc. I was surprised given they should have this in their notes, but answered anyway 11/n

So then the Qured GP started telling me the process of how they take swab tests for covid-19 and the delivery process of the test kit to my house. I then told her, wait a minute, I’ve already had my swab AND my results, this call is to discuss the results!! 12/n

She was unaware. It became clear very quickly that she had been told to call me with regard to "swab test" and that’s it. An admin error on their side, but doesn’t fill you with confidence as a patient. If they can’t communicate internally properly, what else is going wrong? 13/n

So then it turned out she didn’t have my test results. She contacted her internal admin team to get a copy of my results, whilst we waited for her to get that, I quizzed her a bit more on the chances of a false negative in terms of my result 14/n

In terms of accuracy, for the swab test I had, their website claims, “At least 98% sensitivity (true positives) and 100% specificity (true negatives).” 15/n

After getting my results, she like my NHS GP pointed out that given my symptoms, & time since onset, it was very unlikely I would have tested positive at this point. Again, like my NHS GP, she said I probably am not infectious now, but there is a small chance that I might be 16/n

We discussed about testing for antibodies as a next step in my journey (there was no pressure to order a test from them) – this was a more detailed conversation than with my NHS GP 17/n

Sufficient time has passed since onset of symptoms for me to do the test for antibodies, but everyone’s body is different. So I might test negative this week, but the week after I might test positive, as some people develop antibodies later than others. Interesting stuff 18/n

Not sure who their antibody test is from, it just says "sourced from a global diagnostics company" on their website, with accuracy of "97.5% sensitivity (true positives) and 100% specificity (true negatives)" 19/n

The Qured GP also did the same as my NHS GP in terms of telling me what warning signs to look for and what resources to use to seek care should I feel much worse 20/n

The call with my NHS GP was 16 minutes, and the call with the Qured GP was 17 minutes. In both calls, I didn’t feel pressured that they wanted to hang up to speak to another patient and I was encouraged to ask questions by both GPs 21/n

Once the call ended with the Qured GP, I got an email inviting me to view my appointment notes. Couldn’t view them! Same technical error as last week! Had to email them to request my notes. Sigh.
https://twitter.com/ManeeshJuneja/status/1261421735573929986?s=20 22/n

So the next step for me is to think about testing for antibodies. I’m not in a rush. I will carefully explore the options offered by private providers. I’ve also got to think about costs, especially if it takes multiple tests over several weeks before I get a positive result 23/n

My chest still feels tight this evening & I’m coughing from time to time. Brain fog returning too. Even writing this thread can be exertion for the brain 24/n

Thanks for all the messages of support, I appreciate it. Look after yourself and the people you care about. If anything I see the risk in society increasing with the rush to get back to “normal” as soon as possible, without the necessary public health infrastructure /end