Long COVID research risks losing momentum – we need a moonshot

Sly Saint said:
when it's a #millionsmissing protest and the banners are all about ME!
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To be fair they were protesting "both". (No LC/ME dualism now, ya' hear ;))

In 2022, we protested in front of the White House calling for the Biden administration to address the crisis of M.E. The pandemic has quadrupled the number of people with M.E. in the U.S. to an estimated 9 million. In 2023, #MEAction set up a massive display of 300 beds on the Mall in Washington, DC to call attention to the crisis of M.E. and Long COVID.
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https://millionsmissing.org/dc-protest/

We invite you to “walk through” this virtual exhibit with us, and experience this mass demonstration for ME/CFS and Long COVID on our nation’s Mall.
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that photo was from this one
"In 2022, we protested in front of the White House calling for the Biden administration to address the crisis of M.E."
SNT Gatchaman said:
No LC/ME dualism now, ya' hear
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You mean like using an ME protest photo and not even mentioning ME?

I'm all for 'solidarity' with the LC community/cause, but it should work both ways; not just appropriating all things ME as their own without any acknowledgement.
 
I felt that the article could have had a stronger “much Long Covid is MECFS” angle rather than a quick mention of MECFS.

Peluso is part of the AP viral persistence crew.
 
The article is a opinion piece to have a central piece of writing to address politics in the hope of receiving much needed funding. I think it's extremely hard to judge which way to address politicians is the most effective way. Mention ME/CFS in an appropriate fashion and politicians and government agencies will feel too cornered in, as they have to acknowledge their own failings of the past decades and act upon them. Who will take responsibility for these failures? Focus a bit more on viral persistence and you leave enough battleground for those that have neglected post-viral illnesses in the past. It's a lot easier to admit ones failures once one is out of office, see for example https://www.s4me.info/threads/science-anthony-fauci-on-becoming-the-‘devil’-and-a-warning-for-his-successor-sept-2023.35434/#post-496509, rather then when you're still an active politician grasping for votes.

Very hard and impossible to accept for patients that have been suffering from ME/CFS for decades, but possibly a way forward for the moment?
 
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