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.
 
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#MEAction sent out an email asking for signatures on their letter to NIH:
(some line breaks added)
#MEAction email said:
Last year, we sent a powerful letter to then NIH Director, Dr. Monica Bertagnolli, urging her to fund the ME/CFS Research Roadmap, the most comprehensive strategic plan for ME/CFS research to date.

This roadmap is our best chance to secure the federal investment needed for clinical trials, biomarker discovery and real hope for our community. Turnover in NIH leadership has since slowed our momentum.

But there’s good news: High-ranking NIH directors encouraged us to repurpose our letter for Dr. Jay Bhattacharya, the new NIH Director. We’ve done just that﹣and now we need your voice to make it even stronger.

This letter urges Dr. Bhattacharya to allocate $50 million to fund the ME/CFS Research Roadmap. Past funding for ME/CFS Research Centers came directly from the NIH Director’s office so Dr. Bhattacharya has the power to fund at least part of this roadmap.

The more signatures we gather, the louder our call for action.
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Link where you can read the latest letter and add your name:


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:


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


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:


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

Context from Cort Johnson
NIH Director Monica Bertagnolli September 2024

https://www.healthrising.org/.../long-covid-chronic.../ Bertagnolli acknowledged the need to transition from the shot-in-the-arm type funding given by Congress with the

RECOVER Initiative into a "long-term project" that illuminated long COVID "ME/CFS, chronic Lyme disease, all of these chronic conditions." Her call for "A long-term program that's really robust in these conditions", and her support of the Long COVID Moonshot, was encouraging.

When it came to the big question for ME/CFS - what about more funding specifically for ME/CFS - her reply was typical, disappointing, and illuminating; i.e.

"We care a lot about ME/CFS but don't look to us for more funding." Instead, she encouraged the ME/CFS community to pin its hopes on long COVID - which, of course, we are.

"We want to be able to conquer ME/CFS and do it in the best possible way. I hope that the ME/CFS community will see much of the research that's happening now, spurred on by Long Covid, to benefit them."

Ironically, we are learning more about ME/CFS from long COVID - but not from the NIH. As to ME/CFS itself, Bertagnolli stated:

"we have a small but mighty team of long-term ME/CFS researchers who've been interested in this problem, some internal to NIH, that we intend to continue to fully support... The funding issues, that's always a moving target. It's difficult for me to speak to that other than to say, we're going to do the best we can with what funding we receive."

The funding "we receive" says it all: the NIH is not going to dig into its coffers to give ME/CFS a hand up. If Congress allocates more money for ME/CFS, fine... otherwise things will remain the same. At least that provides clarity regarding how important the Long COVID Moonshot bill is for both the ME/CFS and the long-COVID fields. Stay tuned on that - a major effort is coming up shortly
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.



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:
#MEAction email said:
Monday had major challenges as we gathered for the event. Between broken down cars and printing that never arrived, not to mention the late nights trying to fight against funding cuts in Minnesota we faced leading up to the day, I was overwhelmed before I ever walked onto Upper Senate Park. But then you all reminded me, as you always do, that there is the big picture to focus on- its our common fight that matters.
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#MEAction email said:
On Tuesday, we hit the Hill, going to Senate appropriations staffers and Representatives that will directly affect our fate. Amazing volunteers, Danielle and TD, came armed with the stories and photos submitted to us - from those of you at home - so all of you not in DC were with us, very much, adding a face and a voice to ME and Long Covid. Danielle remarked at how many people responded well to our stories and how many good connections were made by going office to office.
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#MEAction email said:
A power couple of this years #MillionsMissing, David and Shaina made it to the Medicaid hearing to talk to their representatives and to witness our friends at ADAPT get arrested for their protest for disability justice.
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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.
 
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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.
 
DigitalDrifter said:
Says EDS is infection associated.
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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.
 
Jonathan Edwards said:
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.
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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.

DigitalDrifter said:
Pushing vitamins for ME, says injecting is more effective than oral.
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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?
 
Cinders66 said:
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/
Click to expand...


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

Video Summary said:
We are so honored to be able to share the stories of a small sampling of the Millions Missing. You sent in your photos and a few words for us to display at #MillionsMissing 2025. These stories deserve to be told. Each person deserves to be seen. And know that they represent so many others.

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

As Matt and Katie shared in their story, “Many roads lead to ME, but none out. People with ME need support and hope to survive. Don’t forget us. Don’t look away.”

Let us come together to bear witness, to share with others, and finally to create change! We call ourselves the #MillionsMissing to represent the millions of people missing from their lives due to ME – missing from their careers, missing from time spent with family and friends, missing simple pleasures like sitting in the sun or taking a walk.

We are missing because our governments have CHOSEN to neglect us. We are missing millions of research dollars; we are missing educated clinicians; we are missing care and compassion; we are missing an urgent response from our governments.

We had planned to video the photos you sent at #MillionsMissing but the wind and time were not our friend. We pivoted though and you went to Congress with us the next day as well as being with us in front of the Capitol! Now we are sharing the slideshow that we did not get to make live that day. We also offer still images.

If reading these stories has you wanting to share yours, please share on your social media and tag us @meactnet and use the hashtags #MillionsMissing and #DisabilitySOS. We continue our fight to save our science, save our support systems, and save our society. Join us!

Learn more and take action at https://www.meactions.org/millionsmissing25
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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
 
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News report from #MEAction:

Minnesota’s Long COVID Funding Saved from Elimination
#MEAction said:
We have good news! The first-in-the-nation Long COVID program run by the Minnesota Department of Health (MDH) has been saved from elimination! This means #MEAction will be able to continue its work helping Minnesotans with ME/CFS, Long COVID and related conditions access vital home and community-based support services, as part of our multi-year grant.
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#MEAction said:
Minnesota is the first and only state to make strategic investments in better understanding and addressing Long COVID and other infection-associated chronic conditions (IACCs), like ME/CFS, so abandoning the program – just as it was beginning to show long-term value – would have been a huge setback. It would also make it much harder to get other States to pursue similar initiatives if Minnesota decided to give up on addressing Long COVID.

#MEAction Minnesota is also working with Senator Scott Dibble’s office on ME/CFS legislation, which has been introduced but has not been voted on yet.

“Advocacy works,” said #MEAction Minnesota State Chapter Chair, Terri L. Wilder, in an interview with Sick Times. “I’m really proud of all the people who showed up. I’m really proud of the people who wrote letters, who called their representatives.”
Click to expand...

Edit: Here's the article in The Sick Times which also covers this news.
 
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