Thread by @WesElyMD

1/🧵For months I’ve been grappling with what seemed like a real gap in conversations about #LongCOVID.

Here in @STATnews, I introduce you to 30 references & 3 #COVID survivors – Ray, Pam, and Carolyn – who taught me a lot. I hope you think so, too…

bit.ly/2Zb9S2J

2/ "I feel like I'm getting the silent treatment & it's killing me," #LongCOVID pt Pamela Bishop confided in me about her months-long interactions as she tried to get answers about a strange array of symptoms that have plagued her since recovering from #Covid19.

Pam then & now…

3/ Up to1 in 3 COVID survivors report experiencing #longCovid symptoms 3 to 6 months later. Their stories give me an extreme case of déjà vu because this is playing out similarly to the problem of long-term survivorship after non-COVID critical illness.
 
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4/ As an ICU physician-scientist, I’ve spent 30 years studying the ways acute ICU illness creates a chronic disease. #Longhaulers often feel dismissed & what they’re experiencing socially echoes the way #PICS #MECFS #Fibromyalgia #LymeDisease pts feel.
 
bit.ly/3C5ZaJ0

5/ Let’s talk PICS. It’s a syndrome many COVID survivors have - characterized by rapidly acquired #dementia, post-traumatic stress disorder (PTSD), depression, acquired weakness and physical disability after being discharged from the ICU.
 
bit.ly/3vCMTtc

6/ It's early days for #longCovid. There's no consensus on what it is or how to treat it. But one thing is clear to me: it’s essential to legitimize patterns of chronic suffering that people incur while trying to pick up the pieces of their lives after acute #Covid19 infection.

7/ The stories of 3 Covid survivors in our @CIBScenter highlight categories of chronic disease that can arise in the wake of Covid19. Ray Fugate has PICS, Pamela Bishop has long Covid, and Carolyn Rogers has PICS + longCovid.

8/ I took care of Ray Fugate, 51, who almost died of Covid-related 🩸clots on a vent. He still experiences PICS 1 year later & is on oxygen 24/7, has cognitive & PTSD. His nightmares & anxiety are improving.

Shelley remains his lifeline, as told in #EveryDeepDrawnBreath

9/ Pamela Bishop never got sick enough w Covid to be admitted, yet at what should be the pinnacle of her career — she has a PhD in educational psychology & founded a research center to study STEM education — she is now completely sidelined by #longCovid.

10/ Bishop is an athlete & mom who did all the right things & just before #vaccines got COVID, then felt fine & went back to work & 3 mos later developed difficultly connecting thoughts, a racing heart, dizziness, & sleep paralysis.
 
Dysautonomia: bit.ly/3prcNiy

11/ After myriad tests, none categorizing her as having a disease, she had no choice but to take an indefinite medical leave from her job. "After initially getting better, I've aged 10 years in 10 months. I'm so confused." At 45 yo, she walks with a cane.

12/ Carolyn Rogers @ 55 yo got COVID in 2020, spent 4 wks in an ICU bed & had #delirium for >2 wks. Then she spent a week in a rehabilitation hospital and went home w #PICS to recover. 4 mos later the bottom dropped out w accelerated #LongCOVID.
 
bit.ly/3ljLpQK

13/ "The problem is that everyone says the virus is gone. Yet my life is upended by a disease that seems unseen to everyone but me. I can't work my computer anymore or lift a 20-pound box. I feel 10 years older," Rogers said.

14/ Rogers: "An even bigger problem is that the very people I would normally go to for help don't believe me and just say I need an antidepressant." Her +ANA, joint paints, racing heart don’t hit thresholds for disease. She feels silenced and alone.

bit.ly/2ZrLPMD

15/ Rogers has dual degrees in business & comp sci, works million dollar contracts, and now has blackouts and says, “I can't spell anymore. If you say you say, 'See a blue sky,' I write it down like water, S-E-A, and then B-L-U sky. It's beyond embarrassing."

16/ Suffering BOTH:

The dilemma for Rogers is that she has BOTH conditions, #PICS + #longCovid, neither of which she's been told much about and both of which doctors are still trying to understand. Her ADRD is real, and it can likely come from both:
 
bit.ly/2Z9FyVQ

17/ @Dr2NisreenAlwan wrote a beautiful article in @Science on “The Road to Addressing Long COVID.” I highly recommend reading her work as a physician, advocate, and patient suffering from this disease.
 
bit.ly/3neAp73

18/ Is the virus reprograming the immune system to speak gibberish, causing dysregulation of many body systems? Many long-haulers talk about aging rapidly, a post-viral problem described in flu & HIV. Think ‘accelerated aging.’
 
bit.ly/30OTlSu

19/ The organs in a healthy human operate as a symphony. Elegant cross talk between organs is orchestrated by our profoundly complicated immune system. Early data suggest that in some Covid survivors, the virus causes immunosenescence.
 
go.nature.com/3G9vq0k

20/ When enough people are going through the same thing, it's a sign to pay attention & give them a voice. Instead, many #longCovid pts feel ghosted. This causes visceral pain, anxiety, and stress, ultimately exacerbating their disease.
 
bit.ly/3jsnPjx

21/ I feel gutted & ineffective as a healer when I don't understand a disease. My insecurities flare & I often get quiet. It leaves pts feeling helpless, alone & dismissed. This happens w #longCovid patients. Talking openly about what I don’t know allows both of us to heal.

22/ I asked Carolyn what she wants: “I want someone to listen. To say I have real problems, not to deny them. To admit they don’t understand, and that they won’t abandon me. And to assure me researchers won’t stop until we have treatments.”

23/ It’s time to stop reinventing the wheel. Thought silos are dangerous. Experts need to learn from different fields, join hands and understand that some illnesses don’t fit into a tidy box. #MECFS #Fibromyalgia #PICS pts have known this for years.

24/fin
We can do so much. @survivorcorp @patientled & others are leading. Support groups @CIBScenter are meeting weekly. Flexible work schedules are in vogue. Let’s provide a lifeline of community and validation for #LongHaulers and Families. Ray, Pam & Carolyn deserve it!

Meant to tag @Survivor_Corps - so sorry for misspelled handle 🙃 & thanks for all you are doing!

I would be remiss if I didn’t mention that anything I ✍🏻 here is a “subordinate complement” to teaching already done by the #MasterWork #LongCOVID coverage of @EricTopol & @edyong209

The main gap I am referring to is the massive amount of suffering from #PICS + LongCOVID.