Thread by @ManeeshJuneja

I think part of the reason why so many people (including some clinicians) think #LongCovid is either being exaggerated or not a real illness, is because the “words” used to describe the symptoms don’t actually reflect the experience of the illness – Allow me to explain 1/n

Many are hearing reported symptoms like “fatigue” or “headache” or “brain fog” and thinking, well everyone feels a bit tired during lockdown or everyone gets headaches/has problems concentrating from time to time, so how can this be an illness? 2/n

I mean the pandemic has been tough for everyone, right? So maybe the "reported generic sounding symptoms" of Long Covid are merely pandemic related distress that everyone is suffering from? I can see why some might think that medscape.com/viewarticle/94… 3/n

That's the problem, the horrendous, terrifying, debilitating experience of #LongCovid ends up being recorded as "generic sounding symptoms" in medical records/research studies which fails to convey the actual lived experience of the illness 4/n

Day after day of being confined to bed because of no energy in brain or body - Is this really run of the mill tiredness that the general population is feeling due to the stress of the pandemic?

https://twitter.com/ManeeshJuneja/status/1326640942997266433

5/n

Pressure in the brain that is so horrible, you feel like cutting your head open - If I tell a doctor this experience, they simply record it as "headache" in their notes which doesn't reflect the experience

https://twitter.com/ManeeshJuneja/status/1370462892894662664

6/n

Are the neurological issues I've had where I often can't even "think" and have been left debilitated been experienced by the general population because of fear about lockdowns?

https://twitter.com/ManeeshJuneja/status/1283933529915756545

7/n

What about the relapses? Where you might feel ok but the exertion of taking a shower might leave you confined to bed for days/weeks with all sorts of symptoms - Is that what everyone is going through because of the pandemic stress? No, I don't think so

https://twitter.com/ManeeshJuneja/status/1283831885777588225?s=20

8/n

If you still believe that #LongCovid is just a bunch of common symptoms that the entire population is experiencing simply because of the stress of lockdown/pandemic, read this thread

https://twitter.com/ManeeshJuneja/status/1370814652867825674?s=20

9/n

How should we be reporting the symptoms of Long Covid in a way that accurately conveys the complexity, unpredictability and unique nature of the illness?

/end