ME Action NC

13/07/2025

Please join us this Wednesday, 7/16 at 12:30 pm for our MEAction NC support group. If you have questions about the disease, need help coping, or want to connect with others who are facing some of the same challenges, this is the place to come. Anyone with or is invited. New people are always welcome.

For zoom link and phone-in numbers, go to: https://www.meactions.org/event-details/meaction-north-carolina-support-call-2025-07-16-12-30-1

02/07/2025

27/06/2025

🧬 In 2015, our government did an amazing thing for people with ME/CFS. NASEM (then called the IOM) issued a report on ME/CFS. It said with the full backing of our government’s science institutions - ME/CFS is a real, biological illness. Here’s how you diagnose and treat it.

That report changed everything. Before we fought simply to be recognized as sick. After we could fight for a cure.

The report called for a 10 year follow-up. They knew a lot would change in the science - and the explosion of people with ME following Covid has proven them right. It’s been 10 years. We need this update on the science.

We’re urging Congress to fund a new report from NASEM that reflects the current research and incorporates findings from Long Covid.

Science has moved forward. Policy must too.

26/06/2025

We talked about this in our Advocacy meetings today. Help us save this important program!

Find your members of Congress by typing in your address on Congress.gov.

26/06/2025

This week for Solve MECFS Initiative’s Advocacy Week 2025, MEAction Georgia & ME Action NC members are meeting with Congress to fight for people with . The need is great. Research and support services are being cut across the board. We are fighting to stop the bleeding.

We want to share this work with you. Every day this week we will be posting one of the actions we are asking Congress to take to support people with ME. These targeted investments are the quickest, most cost-efficient path to lifting millions of Americans out of indescribable suffering.

We hope you will fight with us.
📣 Spread the word - Like and share posts about Advocacy Week. Look for the hashtag
✉️ Contact your congresspeople - Tell them supporting people with ME matters to you. Tell them to save funding for medical research.

Join us in calling for change.

25/06/2025

📢 Tell Congress to Restore CDMRP Funding!

Congress has gutted the Congressionally Directed Medical Research Program (CDMRP). It fueled cutting-edge research for service members, veterans, and everyday Americans. They cut it by 57% or $859 BILLION.

This isn’t just a budget cut. It’s a destructive bomb to the future of treatments for traumatic brain injury, toxic exposure, , and much more. This was one of the only places ME/CFS researchers could get funds.

There is a solution!
🧾The Medical Research For Our Troops Act (H.R. 3906) restores CDMRP—and protects all 35 research areas supported by the program, including ME/CFS.

Tell your representatives to cosponsor H.R. 3906 today. It only takes 2 minutes to make a difference ➡️ https://ow.ly/UiIK50WcopV

24/06/2025

NC volunteers joined Solve MECFS Initiative Advocacy week today to tell the stories of the and fight for people with ME/CFS. We couldn't get meetings with Senator Ted Budd or Senator Thom Tillis today, but were able to support advocates in NJ, VA, and GA.

We shared the experiences of the and called on Congress to help people with . This is one of the things we asked for.

We reached 7,000 signatures on our last letter. This time, our goal is 10,000. Please sign the letter today and share it with your friends and family.

18/06/2025

“For all intents and purposes, there is very little care. You don’t want a disease that doesn’t have any answers” Lizars said. “You don’t want a disease that has no plan, no treatment.”

That's what it is like for both people with and . That is why we fight for research funding, medical education, and knowledgeable care all the time. People with these diseases search years to find a doctor that can diagnose and manage the condition - facing uneducated doctors giving them care that makes them worse or telling them they are not sick. That's why it losing this clinic was such a blow.

Read more at: https://www.newsobserver.com/news/local/article308422905.html =cpy

The COVID Recovery Clinic, created in 2021, coordinated treatment efforts for patients whose COVID-19 symptoms persisted long after a diagnosis.

11/06/2025

We found out over the weekend that the UNC Long Covid Recovery Clinic will be closing soon. They have lost their federal funding. While most of the clinicians will keep seeing people with LC and ME/CFS, they will no longer offer multi-disciplinary, comprehensive care or important services like help with disability paperwork, prior authorizations, referrals outside the local area, and social worker support.

For people with these conditions in NC, this is a heavy blow. Most GPs have no education about these conditions. Our great struggle to find informed medical care has just gotten harder. The fight for disability is now a lot more daunting. Less research will be done. There is no easy replacement for all this clinic's work.

That is why we are calling on everyone who is able to help us fight for this clinic. Contact your Sen/Reps to ask for funding. Spread the word on social media. We have templates to help with this! Check them out here: https://tinyurl.com/4yf74zd2

We cannot go silently into the night. We must shine a light on this problem and let people know just how hard it is to find a doctor that understands these conditions. We need help. Let's fight for it.

Senator Thom Tillis Senator Ted Budd

18/05/2025

Please join us this Wednesday, 5/21 at 12:30 pm for our MEAction NC support group. If you have questions about the disease, need help coping, or want to connect with others who are facing some of the same challenges, this is the place to come. Anyone with or is invited. New people are always welcome.

For zoom link and phone-in numbers, go to: https://www.meactions.org/event-details/meaction-north-carolina-support-call-2025-05-21-12-30

27/03/2025

Hope those interested in citizen science and/or lactic acid can join tomorrow.

Speakers: Ciara Wright, PhD, BSc, DipNT, mNTOI, & Todd Davenport, DPT, PhD, MPH A patient-led study, called The Acid Test", formed on Twitter based on reports of abnormal lactate in ME/CFS and Long COVID. Hundreds of patients around the world collected lactate measurements using at-home finger prick...