Solve ME and #MEAction announce Advocacy Week 2026, March 23 - 27 (USA)

ahimsa

ahimsa

Senior Member (Voting Rights)
Solve ME and #MEAction are working together on a medical education initiative for Advocacy Week 2026. This is scheduled for March 23 - 27.

I've posted about it on this thread but I'm crossposting here in the Advocacy Projects forum.

Details here:

solvecfs.org

Registration Open for ME/CFS Advocacy Week 2026 - Solve ME/CFS Initiative

This year, we'll foster relationships with state-level patient safety and medical boards to encourage them to push for inclusion of ME/CFS in medical school curriculum and on national qualifying medical exams.
solvecfs.org solvecfs.org

They need volunteers to help with this project, sign up here:

docs.google.com

ME/CFS Advocacy Week 2026 Participant Sign-up Form

This year, Solve M.E. and #MEAction are partnering together to move ME/CFS from “optional knowledge” to “standardized knowledge” in clinical care. Dates: March 23-27, 2026 We will be engaging state-level patient safety, regulatory, and public health officials about the lack of standardized...
docs.google.com docs.google.com

I've signed up myself - if another forum member signs up please feel free to contact me.
 
MEAction’s Facebook:

Advocacy Week 2026 starts on Monday - March 23rd! This year, Solve MECFS Initiative and The #MEAction Network are partnering on a medical education initiative. We're working with the systems that shape what medical providers in America learn!

Register here: https://ow.ly/miky50YvzGf

Check out our NEW Participant Toolkit: https://ow.ly/XYsh50YvzGm

We’ll be engaging with patient safety agencies, State Medical Boards, and Chief Medical Officers and asking them to use their institutional authority to champion ME/CFS.

Our ultimate goal is to ensure ME/CFS appears on national medical licensing exams, but this Advocacy week we are focusing on building the relationships that will get us there.

The week is built around writing letters, collecting signatures for community sign-on letters, and personal storytelling - things you can do at your own pace, from home, with templates provided and ready to go.

Your participation makes all the difference! Thank you!

#pwME #MyalgicEncephalomyelitis #MECFS #Advocacy
 
Another update from Solve ME that gives an overview of Advocacy Week this year:

solvecfs.org

Advocacy Week Starts Monday and This Year is Different - Solve ME/CFS Initiative

For Advocacy Week 2026, we're working with the systems that shape what medical providers in America learn.
solvecfs.org solvecfs.org
Advocacy Week 2026 starts this Monday, March 23rd, and this year we’re doing something different.

Instead of meeting with legislators, we’re working with the systems that shape what medical providers in America learn.

We’ll be engaging with patient safety agencies, State Medical Boards, and Chief Medical Officers and asking them to use their institutional authority to champion ME/CFS. Our ultimate goal is to ensure ME/CFS appears on national medical licensing exams, but this week we are focusing on building the relationships that will get us there.

The week is built around writing letters, collecting signatures for community sign-on letters, and personal storytelling – things you can do at your own pace, from home, with templates provided and ready to go.
Click to expand...

The Participant Toolkit (scroll up to see links in earlier posts on this thread) has more details.

Reminder: Volunteers must register to get a link to the online kickoff session scheduled for Monday, March 23, noon Pacific / 3 PM Eastern.

Use this link to register:

docs.google.com

ME/CFS Advocacy Week 2026 Participant Sign-up Form

This year, Solve M.E. and #MEAction are partnering together to move ME/CFS from “optional knowledge” to “standardized knowledge” in clinical care. Dates: March 23-27, 2026 We will be engaging state-level patient safety, regulatory, and public health officials about the lack of standardized...
docs.google.com docs.google.com

This session will be recorded for later viewing.
 
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Reminder: This advocacy action is for US folks only.

For those who just want to do one simple action, without having to read the toolkit or watch all the videos, start with this link:

docs.google.com

Community Letter Sign-on Form

Thank you for adding your voice to this effort. By signing on, you are joining patients, caregivers, clinicians, and allies across the country in asking State Medical Boards and State Health Leadership to recognize ME/CFS competency as a patient safety and standard-of-care issue — and to...
docs.google.com docs.google.com

This form lets you “sign” your name to 3 different letters that will be sent to state medical boards and chief medical officers.

All the instructions are on the form. Just follow the instructions. It didn't take me too long to do it, just a few minutes.

Personal data collected: My recollection is that the form asks for your email address, name, city, state, and zip code. It does not need your full home address (street address).

There is a short section where you are asked to write 2-4 sentences about how this impacts you. I mentioned that it took me 5 years to get a diagnosis and that I still run into doctors who know little or nothing about ME/CFS. You can personalize this however you like.

There are several pages so be sure to click on the Next button at the bottom until it's all done. The last page has a Submit button.

Copies of the letters are shown when you fill out this form. I confess that I did not carefully read the letters, I just skimmed them and plan to read them in more detail later. Copies of all the letters are included in the participant toolkit if you want to read them.

If you want more details (this short version is for those who *don't* want extra details because it's confusing) then there are screen shots of all the pages of this form, and an explanation of the fields to fill in, in the video session from Thursday.

I hope this helps!
 
Important note: The Community Letter Sign-on Form is not just for patients.

docs.google.com

Community Letter Sign-on Form

Thank you for adding your voice to this effort. By signing on, you are joining patients, caregivers, clinicians, and allies across the country in asking State Medical Boards and State Health Leadership to recognize ME/CFS competency as a patient safety and standard-of-care issue — and to...
docs.google.com docs.google.com

Do you have any friends/family who would be willing to help?

Maybe you have a good relationship with one of your doctors and they would be willing to sign?

You can send them this link and ask them to sign these letters.

If they want to read the letters in advance (vs. reading the letters as they fill out the form) the letters can be found on the last few pages of the participant toolkit.
 
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