Thread by @dianaberrent

A thread 🧵 on #LongCovid and chronic diseases…

Could long covid unlock clues to chronic fatigue and other conditions? - The Washington Post ⁦@washingtonpost⁩ ⁦@FrancesSSellers⁩ washingtonpost.com/health/2021/11…

“Could endemic covid leave millions disabled with long-haul symptoms every year, creating a growing public health crisis?”

“Maybe this is a chance for us,” said Krumholz, who is working with colleagues to design rigorous, broad-based studies. @hmkyale
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Among his fellow researchers is Akiko Iwasaki, a Yale immunologist and principal investigator at the Howard Hughes Medical Institute, who lists five hypotheses that she believes could explain the biological underpinning of long covid.”
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@VirusesImmunity @YaleMed

“We have a big dream,” Iwasaki said, describing a sweeping goal of understanding the development of long covid and other post-acute-infection syndromes.”
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@VirusesImmunity @aaronmring @AdaptiveBiotech @LanceBaldoMD @mplancelotta

“They are equal partners,” Iwasaki said of patients, including the advocacy group @SurvivorCorps, which has 180,000 members and worked with the Yale researchers to design studies and recruit participants.
en short shrift for a long time.”
#Lyme #MECFS @danaparish @Yale
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“Survivor Corps founder Diana Zicklin Berrent, who had covid early in the pandemic, recalled how people with ME/CFS and similar conditions initially looked with envy at the attention garnered by covid long-haulers.”
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“It was, ‘Wait a second, we’ve been suffering all these years and nobody pays attention to us. These guys come along, and everybody pays attention,’” recalled Berrent. She soon realized it made sense to join forces.
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“I think it’s an obligation of the long-covid world to pull these other communities along with us in research,” she said. “They have gotten short shrift for a long time.”
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“The NIH initiative, known as RECOVER, announced its first major awards in June, to support infrastructure and the development of core resources.”
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@NIH @nyulangone

“While patient advocacy groups were involved in the development of protocols, some fear that the research will be cumbersome and take on a life of its own in the rarefied world of academic medicine.”
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“The grass-roots groups have already proved their value in citizen-scientist collaborations, according to Survivor Corps’ Berrent, who is now free of symptoms.”
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“I really feel a kinship with these other groups,” Berrent said. “We are in touch with all of these people because it is so important that we don’t leave people behind, that we end up with a net benefit for humanity.”
#chronicillness
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