As we embark on the new year, we are excited to share updates about #MEAction’s advocacy projects and community programs with you! 

While we focus on advancing support, research, and treatments for people with ME, we’re also closely monitoring changes to public health systems under the incoming administration, and will pivot as needed to fight for our community. 

As we start this year, here are ways to get involved and other projects to prepare for:

BUILD YOUR COMMUNITY- Get Involved Now!
As we plan for the coming year, having people ready to take action when the time arises is very important and crucial to our success. #MEAction has a few different ways to engage with us and find community:

Join our Volunteer Groups
Join our State Chapters
Join our Support Groups
Join the Pillow Writers Groups

Upcoming Advocacy Campaigns:
The year ahead will be packed with different campaigns and ways to have our voices heard! Here are just a few of the issues we will be taking a lead on:

ME/CFS Research RoadMap:
Last December, #MEAction sent the NIH director a letter with over 7,000 signatures calling for the NIH to fund the ME/CFS Research Roadmap, which outlines a robust research plan for ME/CFS at the NIH. We got terrific feedback on the letter from within the NIH! Once the Trump administration appoints a new NIH director, we plan to repurpose the letter and continue our campaign calling for funding for the ME/CFS Research Roadmap. We will also pursue a Congressional angle to ensure more funding for ME makes it in the appropriations budget. We plan to attack this issue from all fronts and get the funding we deserve! Stay tuned for announcements very soon!

Telehealth:
The ME and Long COVID communities and disability groups across the country joined in urging our elected officials to continue telehealth for Medicare. #MEAction put together a call script, and several organizations organized letter-writing campaigns. These combined actions had a great impact, and Telehealth was extended through March. The chatter from Capitol Hill is encouraging with regard to support of further extensions, but there is still uncertainty about Telehealth’s future. #MEAction will launch another telehealth campaign in the coming month.

Cochrane:
#MEAction is raising the alarm about Cochrane’s decision to suddenly shut down the 5-year independent analysis of its 2019 review of exercise therapy for ME/CFS. (The flawed review concludes that exercise has a positive effect on ME/CFS, despite relying on outdated diagnostic criteria that doesn’t include PEM.) At the end of last year, Cochrane suddenly updated the publication date from 2019 to 2024 even though there is no new evidence in the review, and the independent analysis had not concluded. 

Cochrane provides systematic reviews of healthcare interventions, and this decision could misinform healthcare providers and policymakers about treatments for ME/CFS. #MEAction is taking action to reverse this decision.  

#MillionsMissing: Save the Date: May 12th 2025! With the ME/CFS Research Roadmap in the balance, it is now more important than ever to join a #MillionsMissing demonstration. Stay tuned for how to get involved. 

Science and Med Ed Projects:
There are a wealth of science and medical projects happening at #MEAction! Here are two examples: 

Mayo Clinic:
In summer 2024, we debuted the Narrative Pacing Study, a survey that posed questions about activity management with focus on symptom-contingent pacing. We received a seed grant, the General Internal Medicine Research Award (2024) from Mayo Clinic Rochester to support qualitative analysis for this data. Then, last fall, we secured a grant from Sigma 2024 American Nurses Credentialing Center, awarded by The Sigma Theta Tau International Honor Society of Nursing (STTI) to use the data from the narrative analysis to create patient education materials to be delivered by Mayo Clinic nursing staff. We’ve now presented to nurses at Mayo Clinic about the project and assembled an incredible team of people with lived experience to help validate the data from the qualitative analysis and guide the creation of the patient education materials.

#TeachMETreatME:
With our 20 successful medical education events during last year’s #MillionsMissing, #MEAction is continuing to pursue partnerships with researchers and clinicians who expressed interest in ongoing collaborations at researchers and clinicians at Mayo Clinic, Georgetown, Emory, Brown, and University of Montreal. We’re looking forward to those projects to come.  With the help of MEAction volunteer Erin Lee, and the review of Dr. Jennifer Curtin and Dr. Stephanie Grach, we also created Anki Flashcards on IACCs for medical students, which we are proud to announce is now a recommended resource on CDC’s Tookit for Medical Students!

Social Services and Care:
Canary Corps Pilot Project in Minnesota: #MEAction is hiring a new position to help us provide direct support for people on the ground in Minnesota. This pilot project is the starting point for a large-scale effort to assist individuals with health and community services that can have a large impact on quality of life.

Press: 
We are continuing our robust press outreach, and casting a wider net to ensure that the media recognizes and understands the plight of ME and Long COVID so that these diseases are prioritized in our nation’s health agenda.  

Community Engagement:
Coming together with the community will be important this year. We have a few gatherings in the works and hopefully more coming soon. Make sure to check your email and follow us on social media to stay up-to-date on all our community events!

Art – #MEAction will continue to host Salons this year as we know this community is filled with amazing creatives and it is a privilege of ours to provide a space for you all to share. And of course, we will be doing our Severe ME Artist Project in the summer.

Modified Movement and Meditation Classes – We will be working with Shannon of Nourish Therapeutic Yoga to host Modified Movement Classes throughout the year. Our next class announcement will be coming very soon–keep an eye out for that information!

Writing – #MEAction will partner once again with the Writers Guild Initiative to offer writers workshops in the spring! Stay tuned!

Financial Support Needed
With so much on our to-do list, your financial support will make a world of difference in accomplishing these actions! Fundraising has been hard over the past year for most non-profits and #MEAction has not been immune. If you are able to give or sign-up to be a monthly donor that would mean the world to us.