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/

 

Executive director Laurie Jones sent out an email update that includes photos / videos:

Update from #MEAction on Millions Missing 2025

A few quotes:

 

Merged thread

Concerns About What MEAction Say About ME & EDS 2025

Just seen a video of an interview with the scientific director at MEAction and I disagree with some of what she said.

Here are the main points:

Code:

https://youtu.be/vrmsldi2l7o?t=631

- Says pacing is where you damage down activities in to smaller chunks. Also says somebody who is mild or moderate may have the same step count as a healthy person. I disagree, your daily energy budget doesn't increase just because you were idle between activities. If you have $1000 of energy to spend a day and you did 6 $200 activities then you're over budget whether you did it all in one go or took idle periods.

Code:

https://youtu.be/vrmsldi2l7o?t=1180

- Says EDS is infection associated.

Code:

https://youtu.be/vrmsldi2l7o?t=1730

- Pushing vitamins for ME, says injecting is more effective than oral.

 

She mentions people who improve and thus explains aspects of me/cfs. How do we even know immune activity increases pr decreases if we can't even find tests for what me/cfs even is?


Also her step count... that's one way I monitor my general wellbeing by looking back at the week or month. I think I am shifting around mild to moderate... I am definitely not hitting the step count of a normal person and don't expect to any time soon.

I sort of find the start of what she is saying a turn off. But I kind of take stuff personally, I think.

 

Yes, that is just wrong. And the further discussion of 'hEDS' is unhelpful and muddled to the extent that it is disinformation. We really need to get that straight.


I imagine that some people with mild ME/CFS have step counts that are the same as some normal people simply because normal people vary hugely in how much they walk about. I am not sure that we have any evidence for there being an 'energy budget' in ME/CFS. There is certainly a limit on what people can tolerate but I don't see a scientific basis for an 'energy budget' in e.g. calorie or ATP terms.

 

Yup. Everybody has a limit on what they can tolerate, and it can change hour by hour. Our limit's unusual because it's so low, not because it exists in the first place.

Why of course!

You wouldn't let people pay £9 at the supermarket for three months' supply of vitamins when you could charge them £250 a month for injecting them, would you?

 

@JaimeS

 

Rationale behind the $50m funding call for the roadmap that is part of #MEActions campaign

• "$50 million would allow for clinical trials, which we have none currently. It’s a number that is achievable in a time of extreme budget cuts. Yes, we want a billion dollars but the reality is we are facing the most extreme research budget cuts in our lifetime. This was thought through with a collection of lobbyists, advocates and allies on the hill as something we could win." taken from their facebook page

 

#MEAction has released a new video, a slide show of photos along with names and personal stories:

The #MillionsMissing Share Their Stories 2025

For those who have trouble with video here's a link to a page with all the still images:

https://www.meactions.org/the-millions-missing