Thread by @WesElyMD

1/🧵 The Road to #LongCOVID:

In her @ScienceMag piece, @Dr2NisreenAlwan teaches that @Twitter & FB served a purpose but can’t remain our authority in defining devastating disability suffered by millions after #COVID19. We must have more science!

bit.ly/2Wv8Lcf

2/ In 2020 the main support for pts with prolonged symptoms came from online testimonials and absent community testing sites, people were left to guess as to whether or not their crazy symptom profile was due to COVID.

3/ “A common theme emerged: lack of recognition by the medical profession. Patients, including doctors, w #LongCovid consulted healthcare providers & their symptoms were commonly minimized, dismissed, or labeled as anxiety.”
 
#Stigma #Discrimination #MECFS

4/ ~75% of hospitalized pts at 6 months & up to 33% of those with mild COVID, develop prolonged symptoms: exhaustion, brain fog, chest pain, breathlessness, headache, myalgia, dizziness, and a fluttering heart. Cognitive disability causes job loss and even suicidality.

5/ As much as 1% to 2% of the population 11 to 50 years old will likely be living with #LongCOVID (rough estimates) going forward, which translates into MILLIONS of economically active people disabled by this disease process.

6/ Dr. @Dr2NisreenAlwan is trying to achieve standardization since the diagnostic criteria are still not formalized & the name for this clinical entity varies. I discuss word-salad terms a bit here:
 

https://twitter.com/WesElyMD/status/1382426841588367360?s=20

7/ She writes: “Autonomic dysfunction after viral illness, which is also a feature of #MECFS, can cause disabling & include postural orthostatic tachycardia syndrome (POTS). Exact case definitions of what is collectively termed “postviral syndrome” are needed.”

8/ I have had patients with the cardiac valvular and arrhythmia manifestations as well as severe pancreatitis…and we also see organ damage in the liver & kidneys BUT what is specific to #COVID or a result of #sepsis-related multi-organ dysfunction gets confusing.

9/ Just think about how complicated it is to unpack the pathophysiology of this entity when people carry comorbidities into the disease, and then have immune system derangements, vaccination, and reinfections. Thus, what she calls for here is…

10/fin
Reporting, Recognition & Research. Reporting into formal #LongCOVID registries. Recognition starts with LISTENING & not shaming or discounting. Establishing formal criteria. Research looks at risks, prognosis, recovery, Pathophys, Tx, vaccination, & economic impact.