Thread by @ahandvanish

Thank you so much to @RepPressley for meeting with leaders of the #LongCovid & disability community to talk about major treatment, research, and policy needs, and her call to the CDC to #CountLongCovid!

Our full conversation is available here:

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Thank you to all the advocates (representing @patientled, @itsbodypolitic, @C19LH_Advocacy, @UTc19LongHaul & others) who spent energy giving amazing testimonies: @LisaAMcCorkell, @chiluvs1, @netiamccray, @LisaOBrienn, @SeeMiaRoll, @K_Bishof, @rubyslippahs, @annwlace409 & Molly 2/

A thing that stood out to me: Dr. Bateman (1:02:59), who spent her career seeing v disabled ME patients, saying:

"I was completely stunned by the disability & severity of illness in #LongCovid...the amount of cognitive impairment & physical impairment is just unbelievable."

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Representative @AyannaPressley was insistent that those most impacted be heard, and actively chose #LongCovid patients and disability leaders closest to the experience to participate, in line with the values of disability justice (which few leaders do!) 4/

Timestamps if you want to watch the testimonies:

@K_Bishof (3:22)
@LisaOBrienn (7:52)
@netiamccray (13:20)
@LisaAMcCorkell (18:21)
Molly Burch (22:35)
@annwlace409 (26:12)
@chiluvs1 (32:23)
me (43:32)
@SeeMiaRoll (50:43)
@rubyslippahs (1:09:20)

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I talked about cog dysfunction/memory loss, @patientled research, antibodies (& lack of antibodies in #LongCovid), test inaccessibility, biomedical research, ME/dysautonomia & outdated treatment info putting LC patients (esp kids) at risk of severe ME:

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