Thread by @WesElyMD

1/🧵 How do #COVID patients suffer after the ICU?
 
This new @JAMA_current study of 246 Dutch pts shows that 3 out of 4 people had physical problems 1 YEAR LATER plus 1 in 4 have #brainfog, depression & anxiety.
 
What do we call this?

#LongCOVID #PICS
 
bit.ly/3o4djkT

2/ The paper is also discussed in @Medscape👇: “Our study shows what an impact ICU admission has on former #COVID19 pts. Even after 1 year, half are tired or experience lack of the energy to fully resume their work," says author Marieke Zegers, PhD
 
wb.md/33U9DeF

3/ I searched this paper for well-known terms like post-intensive care syndrome #PICS, #LongCOVID & even “post-acute sequelae of COVID”#PASC
 
NADA. Zip. Zilch.

Why weren’t these names mentioned? At the very least, these pts’ disabilities are DEFINITELY PICS & underestimated btw

4/ And there is no doubt in my mind that some portion of these cognitive, mental health, and physically disabling symptoms are ALSO caused by the delayed onset (eg, 100 days later) of problems from COVID that we know are plaguing millions. ie, #LongCOVID.

But what proportion?

5/ Herein lies a BIG problem in medicine. When you don’t NAME something…well…it has no name.
No identity.

These patients gave of themselves, their time & their suffering to help science & future pts.

They were left nameless. No PICS. No LongCOVID. No…??

#MedTwitter #nurse

6/ The Benefit of naming - this piece used “smelling problems” post COVID to outline this point…

For Mehta, just discovering what it was called gave her experience legitimacy. “When I saw the name, I knew my condition was real & I wasn’t alone.”

wapo.st/35Ar8kI

7/ It’s a medical community problem. A societal problem. I am not faulting the authors. We don’t yet have the vernacular or science to tease apart PICS from LongCOVID. Patients in this study fall into all three categories, yet NO categories were mentioned.

What does that do?

8/ Doctors do poorly when we don’t know what to call something.

📍We feel insecure.
📍We hedge.
📍We involute.
📍We don’t serve you well.

How does that make you feel as a #LongCOVID patient?

unheard, unseen, silenced? #MECFS

bit.ly/2Zb9S2J

9/ fin

What’s the solution? 1st we must listen better & name this suffering.

We must realize this #PublicHealth problem is ballooning.

Create vernacular to name it and the space to see & hear you as patients with #PICS, #LongCOVID & both.

Then healing begins.

Thoughts?