ME Action NC

28/10/2025

04/10/2025

Researchers with DePaul University are asking for the ME community’s help as they develop a new questionnaire to identify & assess PEM. If you have a spare spoon, check out the link below. It takes only a few minutes to complete their survey.

Here’s the info:
“Are you 18 or older? Do you experience Post-Exertional Malaise? Or are you a member of the general population interested in contributing to research?
We are conducting a brief online survey as part of a research study focused on Post-Exertional Malaise (PEM). Your responses will help us evaluate the validity and reliability of a new survey tool designed to assess PEM symptoms.
The survey takes approximately 10-15 minutes to complete. Participation is entirely voluntary and anonymous. Additional information is provided on the first page of the survey.
You can access the survey here: www.dsqpem2.com

Leonard A. Jason, Ph.D.
Director, Center for Community Research
Professor of Psychology, DePaul University”

You are being asked to participate in a research study designed to evaluate the reliability and validity of a new survey instrument that measures Post-Exertional Malaise (PEM)—a key symptom experienced by people with Myalgic Encephalomyelitis (ME). PEM involves a worsening of symptoms after physic...

15/09/2025

Please join us this Wednesday, 9/17 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-2025-09-17-12-30-1

07/09/2025

For many people with ME, telehealth is their only way to access medical care. Help us save it!

Have you called your Congress members about telehealth today? Call script here: https://www.meactions.org/telehealth
​​
Essential telehealth provisions are set to expire on September 30th 2025. Congress needs to hear from all of us that telehealth saves lives. The “CONNECT for Health Act of 2025” (S.1261/H.R. 4206), introduced as bills in the both the House and the Senate, directly addresses the long-term expansion of telehealth.

These bills’ intent is to make many of the current pandemic-era telehealth flexibilities permanent, ensuring continued and future access for Medicare beneficiaries and expanding coverage for more providers

Help us advocate today!

If you don’t have the capacity to call, an email can also help! It doesn’t matter how you reach out. It just matters that we voice our need for telemedicine access to continue!

Want to call in community? We have a community call party coming up on September 17th 3:00 pm ET. https://us06web.zoom.us/meeting/register/hHS7GVMISS-zCtmRSrVkuQ #/registration

18/08/2025

Please join us this Wednesday, 8/20 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-2025-08-20-12-30-1

08/08/2025

Today is Severe ME Day. 25% of people with ME are severe. They live their lives alone & suffering in the dark - unable to leave their beds, eat, or tolerate light & sound.

Today we stand witness to their suffering. We amplify their voices and fight for those who cannot write or speak. We shout in 1 voice that though they may be forced into solitude, they are not alone. The ME community stands with them.

We are



ID: Simple graphic with logos from Bateman Horne Center, Solve MECFS Initiative, Open Medicine Foundation, and The Network at the top. Text underneath reads: “Together, we’re amplifying Severe ME voices with one united hashtag: .”

08/08/2025

Today is Severe ME Day - a day we come together to especially take time to honor and educate about the 25 percent living with the most severe form of this disease and remember those who have died from ME.

M.E. stands for myalgic encephalomyelitis, a a complex chronic disease that presents with symptoms in multiple body systems. Severe ME is experienced by approximately 25% of people with ME and can include being bed-bound, tube-fed, extreme sensitivity to light and sound and much more. It is a level of debility that can be almost impossible to comprehend unless you have experienced it or witnessed it.

For those with Severe ME who can interact online, we share your stories. We know the sacrifice it is on many levels to share.

For those with Severe ME who cannot communicate outwardly right now, we are holding you close and sending our love and we keep showing up to fight however we can until no one is left in their darkened room.

For everyone, please listen, learn, share, give....whatever you can do to make a difference in the lives of people with myalgic encephalomyelitis.

Check our stories for shares! We have already begun amplifying the storied of people with Severe ME and please stay tuned for our 2025 Severe ME Artists Project debuting today.



ID: Simple graphic with tan background and a simply drawn red heart with the text: Severe ME Day August 8, 2025. logo at bottom.

08/08/2025

One thing I wish people understood about living with this disease is…I want to spend time with others, but my body doesn't always let me.

08/08/2025

In honor of , Open Medicine Foundation, The Network, Bateman Horne Center, and Solve MECFS Initiative are joining forces to amplify the voices of those most often unheard.

Today, we launch , a shared hashtag to highlight stories, art, and education about Severe ME.

Together, as ME organizations and advocates, we’re committed to this community, not just today, but every day.

We invite you to join us. Use to share, support, and stand with people living with Severe ME.

08/08/2025

Day
Aug 8th is a day of Remembrance & a day of amplification

25% of those with are Severe/Very Severe. Trapped in the Dark, the Void, the Wasteland





ALT TEXT: Black background with Blue forget-me-not flower
white text reads:
Severe M.E. Day
August 8th
Forget M.E. Not
Logo bottom left corner

08/08/2025

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...