#MEAction Millions Missing 2025, USA campaign - SOS (Save our Support Systems, Save our Science, Save Our Society)

#MEAction has started planning for Millions Missing campaign (May 12) in the USA.

Why We’re Sending out an SOS this #MillionsMissing

If you go to that link you'll see there's a lot of information including this US toolkit

(separate plans are in the works for the UK and other locations -- still waiting for details)

A news item has already been posted in the #MEAction news forum. This thread is for discussion or brainstorming by forum members.

There are two planning meetings scheduled for today (April 10). I'm planning to attend the second one.

I'm going to try to take some notes and then post about it on this thread. Wish me luck!

 

Good luck and stamina. But also: Take care of @ahimsa too!!

 

I wrote this on their Facebook:
Regarding research, are you just counting long Covid research as being a worthy and full substitute for m.e research? “Save our science“ sounds likes a conservation effort & that M.E has a lot to lose, rather than pre-Covid M.E being in a state of scandalous neglect, openly sidelined. Yes m.e has a reducing number of centres of excellence from 3-1 but one of these cuts , pre trump, is the NIH reducing M.E research to simmer level as it is replacing M.E with long Covid. Yes one loss is due to Trump’s cuts but that is potentially reversed if Columbia universities amend disliked behaviour.
The M.E story is that there is so little to cut at <$15m / year research , because of neglect and open abandonment of the longer term, non-covid trigger population.

it’s long Covid research, that excludes people without a Covid trigger and ill pre-2020 , that has had all the resources ie 450 clinical trials and it’s possibly facing some cuts which people keen to preserve, although not the trials as I understand. So this advocacy, on research, seems to be for long Covid, based on the trickle down theory of knock on benefits for wider M.E? Or can you provide details of how research at threat of cuts was specifically on M.E or related to pre-Covid m.e? We are centring this, yet the only mention of ME I saw on long Covid awareness day, in their charity literature & media was a brief mention of “m.e and other infection associate conditions” in about paragraph 15 of a patient-led article

This activism, & I note last years millions missing was replaced by an educational event, does not seem to be highlighting the unjust disparity between long Covid and m.e funding or the inappropriate NIH focus / concern only on early stage illness and abandonment of the longer time/ more complex ill with m.e , NIH stating m.e had a damage that will be harder to treat yet doing nothing to further this. I don’t see a highlight of the need of the pre-Covid m.e community for a well funded, comprehensive research strategy. Why can’t the campaign be specifically on the need for the ME road map to be funded & pre covid M.E to have fair funding, rather than pwME left on the shelf and back of the queue ?

The #MEAction campaign was then launched with this explanation

To which I asked:

Where in the public domain is evidence that the m.e community was on the brink of having its roadmap funded please.?? Surely the blockade to m.e was that the NIH were openly turning its back on it & telling us , as reported by Cort Johnson , not to look to the NIH for funds - & 2 senior officials said this - rather than what’s occurred in the last 2 months with Trump? The NIH wanting to wind down M.e research, replace it with LC and refusing to give m.e money is a separate issue to what the well -funded long-Covid community Is potentially facing with the Trump administration
& I quoted the
October 2024 #MEAction article:

“

 

Details of DC protest

 

Trump withholding university funds until they please him mentions Columbia

https://twitter.com/user/status/1910695366506209531


Trumps covid cuts
https://www.bmj.com/content/388/bmj.r636/rr

 

Crossposting this information which was posted in the #MEAction news forum -

#MEAction web page for Millions Missing 2025:

Millions Missing 2025

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.

 

I have not forgotten about posting a few notes from Thursday's planning meeting but I have not been able to do so yet. I'll try to do that soon!

There's not much more than the official info posted in the previous message but I do have a few things to add.

 

So, I've tried to gather my notes and my thoughts (ha!) from the Millions Missing planning meeting.

Here are a few bullet points, no particular order:

• One of the main events is a protest on May 12 at noon at the Capitol Building in Washington, D.C.

• Having really good images for the press (the cots with pillows in front of the Washington Monument, the protest in front of the White house) is very helpful. If there are images the press can use and reuse then it helps keep our issues in the headlines. Some examples from past Millions Missing protests.

• There's new merchandise with this year's theme - SOS - available. SOS stands for a couple of things:
  • Save our support systems
  • Save our science
    
  • Save our society

• If you want to host or co-host a local event (this is for US based events) then use this form on the #MEAction website and they will offer help and try to match you up with others in your area who want to do an event. If you want to attend a local event, and need help to find one, you use the same form. They will let you know about events near you if there are any.

• I asked whether there's a document somewhere showing all the cuts that have been made to ME/CFS and Long Covid research since it's so hard to keep track with all the changes going back and forth. I would like some document like that which I can cite even if all I do is post on social media for May 12. They said they are working on something like that.

• They again emphasized the importance of using personal stories about how you would be impacted (or have already been impacted) by cuts to research, medicare, medicaid, social security, tele-health (phone and/or video doctor appointments), etc. Stories tend to make a stronger impact vs. statistics (this is my paraphrase, not direct quote from the meeting).

• The House of Representative should be "in district" (at their home offices, not in Washington, DC) the week of May 12. So one option, rather than organizing a protest, would be to set up a meeting with your Congressional Rep. (or one of their aides) to tell your story one on one. There will be storytelling training (coming soon).

• Because the theme is to stop cuts to infrastructure all people with disabilities are invited to join in.

I'm attaching two of the slides from the meeting that I thought were helpful.

 

Here's a helpful document about protesting from #MEAction -

How to protest with with ME And other Energy-Limiting Chronic Diseases (PDF file)

I can't remember whether this has been posted on the forum before but I thought it would be good to have a link in this thread.

 

Millions Missing SOS - Storytelling Training session

Sunday, April 27
Noon Pacific Time / 3 PM Eastern Time

"Expert storyteller, Kirsten Ferrell, will help us articulate our SOS stories in a quick and effective way"

Event lasts about 1 1/2 hours.

Register here:

https://www.eventbrite.com/e/millionsmissing-2025-sos-storytelling-training-tickets-1329189033179

I think this training is mostly aimed at folks in the USA who are planning to talk with their Congress representatives but it doesn't explicitly say that anywhere.

In theory, the ability to tell your story in a short and compelling way might come in handy in many different situations!