Thread by @TomKindlon

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“What Is #LongCOVID—and How Are We Going to Solve It? This potentially life-altering post-viral syndrome may have affected as many as 23 million Americans (and counting)”

Contains quite a bit of discussion about #MEcfs

prevention.com/health/health-…

#CFS #PwLC #PwME #CFSME

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“We’re starting to gain more understanding of what’s driving #longCOVID & who is most at risk, & the more we understand, the more it will help us get a grip on similar chronic illnesses, like #MECFS, that have been largely ignored for far too long” - @VirusesImmunity

#CFD

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“In those who felt ill from #postCOVID19 syndrome for at least six months, the most common symptoms were fatigue, cognitive dysfunction, & post-exertional malaise (a triad that besets many people with #MECFS), according to the study” of 3762 patients by @patientled

#LongCovid

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“researchers now suspect that it [EBV] plays a role in ME/#CFS in a subset of genetically susceptible people. If #EBV is also causing some cases of #longCOVID, doctors could try antivirals in combination with other medications that are being studied for EBV-associated #MECFS”

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People with #PostCovid can participate in
“@YouMeRegistry: ‘We launched this in June 2020 for people with #MECFS, but when we realized that #longCOVID causes similar symptoms, we included an additional path for those patients to participate,’ says Amitay of @PlzSolveCFS”
#PwLC

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@YouMeRegistry “includes patient-reported data, a symptom-tracking app, and bio- samples to be used in research looking at causes, treatments, and potential cures”

#LongCovid #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PostCovid #PASC #MEcfs #CFS #PwME #CFIDS #CFSME

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“These patient activists are fighting for change:When actress Lili Lim heard stories of people with #longCOVID in late 2020, she was angry. Lili, 27, has had #MyalgicEncephalomyelitis/#chronicfatiguesyndrome (#MECFS), which can also be triggered by a virus, for 5 years”(contd)

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“We’ve known for decades viruses can cause long-term health problems,so why do we not understand how it happens or what to do about it?” she asks. Now active in the @Long_COVID_All,a network of patient- advocates & scientists,Lili helps raise awareness of post-viral illnesses”

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“Those of us in the ME/#CFS world know how medicine disregards people with unexplained illnesses,” says Oved Amitay, CEO of @PlzSolveCFS, which is part of the Alliance. “We wanted to spare #COVIDlonghaulers that suffering”

#PostViralSyndrome #postviralillness #PVFS #MEcfs

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“Researchers too are sharing information about similarities between #MEcfs & #PostCovid, says Lily Chu MD…e.g. studies of ME/#CFS patients have shown irregularities in the body’s ability to generate energy—a finding we need to investigate in #longCOVID patients”

#postviral

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“ME/CFS advocates are advising COVID groups on coping with a hallmark of both illnesses:post-exertional malaise.”This isn’t just tiredness after exercise. It’s feeling exhausted & ill,like you’re coming down with the flu,for hours or days—even after mild exertion eg a shower”

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“Doctors often suggest gradually upping exercise—this is dangerous, Dr. Chu adds, as even low- intensity exercise can exacerbate symptoms” [for those with #post-exertional malaise like those with #MEcfs and some with #LongCovid]

#MyalgicEncephalomyelitis #PwMEs #MEeps #SEID