Thread by @TomKindlon

[Thread]
"#LongHaulers Are Redefining #Covid_19: Without understanding the lingering illness that some patients experience, we can’t understand the #pandemic."

In-depth reporting by @edyong209.
Include some discussion of #MEcfs

theatlantic.com/health/archive…

#CFS #MyalgicE #PwME
1/n

2/n
“[#Covid] #Longhaulers had to set up their own support groups. They had to start running their own research projects. They formed alliances with people who have similar illnesses, such as dysautonomia & #myalgicencephalomyelitis aka #chronicfatiguesyndrome”
#Covid19 #Covid_19

3/n
“More than 90 percent of [#Covid] #longhaulers also have “post-exertional malaise,” in which even mild bouts of physical or mental exertion can trigger a severe physiological crash. “We’re talking about walking up a flight of stairs and being out of commission for two days,”

4/n
“[PEM] is the defining symptom of #myalgicencephalomyelitis or #CFS. For decades, people with #MECFS have endured the same gendered gaslighting that #longhaulers are now experiencing. They’re painfully familiar with both medical neglect and a perplexing portfolio of symptoms”

5/n
“Many (but not all) cases of ME/#CFS are triggered by viral infections, and new clusters have historically emerged after outbreaks. “When #COVID19 started to happen, I said to my husband, ‘Oh God, there’s going to be an avalanche of #MECFS,’” Lange told me.”

#Covid_19 #Covid

6/n
“Some #longhaulers are skeptical—and even angry—about the #MECFS connection. They won’t countenance the prospect of being chronically disabled. They don’t want to be labeled with a condition that has long been trivialized.Nichols sympathizes;she used to trivialize it herself”

7/n
“I falsely thought it [#myalgicencephalomyelitis] was just people being too tired—and I feel terrible about that,” she said. Her plan is to use her imminent diagnosis as fuel for advocacy, “as a way of paying back the ME community for my disbelief.” - a #Covid_19 #LongHauler

8/n
“Then again, they [#Covid_19 #LongHaulers] might face the same neglect that people with ME/#CFS have long endured. “We’ve been demanding for decades that people do something,” says Terri Wilder, an activist who has #MECFS.”

#myalgicencephalomyelitis #ChronicFatigueSyndrome

9/n
“We still have no FDA-approved drugs, no systems of care [for #myalgicencephalomyelitis/#ChronicFatigueSyndrome]. We only have 10 to 15 ME/CFS medical experts in the country [USA]. We all want our lives back, and we want this broken system fixed.”

#MyalgicE #MillionsMissing