Thread by @MEActNet

Great video interview with #MEAction's Director of Scientific & Medical Outreach Jaime Seltzer @exceedhergrasp1 with Frank Diamond of @ICT_magazine.

"We expect the number of people with ME/CFS to triple or quadruple due to the pandemic alone."
#pwME
infectioncontroltoday.com/view/getting-a…

Transcript is available under the video.

"We have so much history—recent history as well as 100 years ago—to tell us that it would be incredibly unusual and atypical if SARS-CoV-2 were the only viral infection that did not lead to post-viral complications."
#longCovid #pandemic

"...when long COVID became a big deal & a headline on the international stage, researchers at very impressive institutions with very impressive roles first became interested in post-viral disease...that’s wonderful...we all welcome them to the field, & we hope that they’ll stay."

"At the same time, there are people who have been working in ME/CFS or POTS [postural orthostatic tachycardia syndrome] which is another often post-viral complication. And they have the knowledge & experience required to be foundational to these efforts." #MECFS #POTS

"It is so odd how often I see people reinventing the wheel and stating information about long COVID as if it’s surprising or new when we already knew this or thought about ME/CFS or POTS." #LongCovid #pwME

"People with ME have the lowest quality of life of people with any disease to which I’m aware it has ever been compared, including things like cancer and kidney failure. These people have been waiting decades for research."

"And without collaboration with the researchers and clinicians who have been here all along we stand to repeat the same mistakes and we’re wasting time."

"There is now abundant research showing that pushing through this disease not only doesn’t work, but it appears to make patients worse off, possibly in the long term. Some of the long COVID clinics are pushing graded exercise because that’s simply what they’re familiar with."

"And again, they’re unfamiliar with the literature and unfamiliar of the history of these diseases. Post-exertional malaise appears to be a metabolic or immune reaction or both. It is not possible to simply push more and more exertion on the patient and have them regain ability."