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#LongCovid

7 posts6 participants3 posts today
Public
T 🍉

International Long COVID Awareness Day was March 15th.

From the patient-led research collaborative fact sheet:

At least 400 million people globally have Long COVID, and this number is likely a significant undercount. In the US, about 1 in 19 people have Long COVID–the same rate as diabetes. But only 7% of doctors say they’re confident diagnosing Long COVID, and a majority of Long COVID patients report having negative experiences as they attempt to get care.

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#covid#LongCovid
Public *
Christian Schwägerl

Wenn Bundespräsident #Steinmeier über die nötige “Aufarbeitung” der #Corona-#Pandemie spricht, klingt das so, als wollte er noch den letzten Querdenker besänftigen. Wann und wie wird eigentlich wieder der #Covid-Toten gedacht (letzte Gedenkfeier war bei 80.000 Toten 2021, jetzt sind es mehr als doppelt so viele), wie werden deren Angehörige, Menschen mit #LongCovid “abgeholt”? Wie wird gewürdigt, dass Zehntausende Menschen nur wegen Pflegekräften, Hygienemaßnahmen, Impfungen noch am Leben sind?

Continued thread
Public
Tom Kindlon

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Table 1. Never-words, their impact, and suggested alternatives

from

Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders

mdpi.com/1660-4601/22/2/275

#LongCovid #MEcfs @mecfs @longcovid @chronicillness
@spoonies
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie

Table 1. Never-words, their impact, and suggested alternatives. Never-Words Explanation and Impact Alternative “You don’t look sick”. Many patients may appear healthy, but feel very sick with various symptoms, including fatigue and pain. Please refrain from commenting on their appearance. “You need to stay positive”. Saying this to patients with debilitating symptoms with limited treatment implies that the patient did not stay positive or that the patient’s attitude is to blame for feeling or staying sick. “I know it can feel discouraging to feel so sick, and especially for so long. We will work on this together”. “At least it’s not cancer”. Minimizing symptoms and disabilities is not well-received by patients who are suffering with non-terminal, but debilitating, and disabling conditions. Comparing diseases to make a patient feel better is a strategy that is best avoided, since it usually has the opposite impact.
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