Thread by @AstroRoyalScot

#LongCovid update at 5 months: no progress to report - so instead a 🧵on things best not to say to someone with Long Covid:

1: Wow you’ve been housebound for X whole months, how absolutely terrible that you’re missing out on so much.

🙁 No reminder necessary

2. It’s so unlucky that you got this new illness, it’s so very rare.

#LongCovid isn’t rare. ~3% of the UK population are currently dealing with this chronic illness. Many argue it’s not even new with people suffering with #MECFS (very similar to LC), ignored for decades.

3. I know you’ll be better any day now.

Sadly the statistics say otherwise - published in Nature, a study of 1000 #LongCovid patients found 85% still had symptoms 1 year after the initial infection.
nature.com/articles/s4146…

4. How about I phone you for a nice long chat to help cheer you up.

You are kind, but please be aware that conversations are incredibly exhausting: 20 mins chatting = 1 hour resting

5. You’ve got to start building up your fitness levels again, get your energy levels back.

Exercise for me results in post exertional malaise and days in bed as a result. Please don’t advise those suffering from chronic fatigue to power through it. #StopRestPace

6. We’re covid positive, but our son is still testing negative. Any chance he could come round to play with your son?

Erm…. really?? A new Covid infection on top of #LongCovid should be avoided at all costs

Fear not though tweeps - I’ve come to terms with my new dynamic disability. By learning how to prioritize, modify and pace I can still enjoy the limited range of activities that I can do.
Please keep wearing your masks - the best way to prevent #LongCovid is to not get Covid.