USA: News from #MEAction

#MEAction web page for Millions Missing 2025:

Millions Missing 2025

(this page may have already been there when I posted on Thursday but I had not found it yet!)

The page includes 5 links at the bottom:

• Host a local event
  Use this form if you want to host or co-host an event.
  This form can also be used if you want to attend a nearby event and you need help finding one.
  
  
• Join us in DC
  Use this form if you want to attend Washington, DC even in person.
  
  
• US toolkit
  Lists several ways to participate and some suggested talking points.
  
  
• Global toolkit
  Similar to US toolkit but excludes info about US events and includes links for MEAction UK and MEAction Scotland.
  
  
• Shop
  T-shirts and other merchandise.

 

News from the #MEAction Georgia chapter

#MEAction Georgia Volunteer, Maggie Boxey, Speaks at TEDxOjai

Here's the direct link to the TEDx talk on YouTube:

https://www.youtube.com/watch?v=JzKfi8LOMQU

 

"Trial By Error: #MEAction’s Jaime Seltzer on Where We’ve Been, What We’ve Learned, and Where Things Are Now":

https://virology.ws/2025/05/01/tria...n-what-weve-learned-and-where-things-are-now/

 

#MEAction sent out an email asking for signatures on their letter to NIH:
(some line breaks added)

Link where you can read the latest letter and add your name:

Demand NIH Fund the ME/CFS Research Roadmap! ​

After filling out your name, email and country don't forget to scroll down and click on the "sign petition" button to submit your information!

#MEAction also posted a call for signatures on Bluesky:

https://bsky.app/profile/meactnet.bsky.social/post/3loh3kc3tas23​

(I didn't see a news item on #MEAction website or I'd use that link)

 

Context from Cort Johnson

.



from what I can see m.e orgs have worked on the long covid moonshot, which I think only addresses m.e in terms of it being sometimes studied in comparison with long Covid, not in any other way.
Were they calling for $1 billion per year for aclong Covid moonshot? I would be interested to see a breakdown of why these figures were chosen for the ME roadmap , which maybe isn't per year?.. I understand that the financial situation has changed in the US. The social media says they're calling for $50 million and the letter says $80 million

I'm concerned about buying into ,as I see, narratives regarding long Covid, that the determining factor regarding funding is numbers affected because, as far as I'm concerned, other factors should determine funding too, such as suffering, quality of life, disability and in terms of m.E, how long an illness has been denied funding for . I don't estimate m.e funding based on m.e is six - 10 x times less common than long Covid, therefore we deserve six - 10 times less funding. I would be interested to see how roadmap funding was worked out, was there a Figure attached to it as recommendations when published? Previous funding calls had been based on fair funding estimates of up to $200m https://www.meaction.net/2018/05/11/letter-to-francis-collins/