About ME International
Purpose
Our purpose here at ME International is to advocate, educate and support the ME community. There has been a significant lack of understanding concerning Myalgic encephalomyelitis that has led to poor policy decisions around the world. It is one of the least understood and researched illnesses. Patients often receive poor recommendations from the medical community due to the lack of understanding and misconceptions. Since ME is a chronic illness, patients frequently lack in fundamental support to meet daily needs which can lead to isolation and severe depression. This has led to a high rate of deaths by unable to fight both this chronic disease and the social abandonment. Our goal is to change this trajectory and provide immediate support for ME patients contending with this disease.
Goals
The goals of ME International are:
- Empower/Educate Patients
- Assist ME Patients
- Create and provide educational materials
- Support ME Patients, Caregivers, Advocates, Family & Friends
- Advocate on Behalf of the ME community.
- Be a partner in the ME community building relationships that strengthen efforts for better lives of ME patients.
Our History
ME International was established in 2019 out of an observed need to advocate for patients with myalgic encephalomyelitis. The organization was originally founded by Pam and Jim Lutey, and quickly grew into a worldwide nonprofit organization. We are constantly adapting to the needs of ME sufferers and initiate programs that supports our members and the community. We continue to grow and create projects that give immediate assistance to patients and education to the public.
Some of Our Projects
Since ME International is an ALL VOLUNTEER organization, all donations go toward members or the facilitation of projects for members. We are always looking for ways to help ME sufferers and adding projects to assist those persons.
Newsletter: MEI spends a considerable amount of time examining new research and efforts by other organizations that benefit the ME community. If you would like to read more about this, sign up for our newsletter by becoming an MEI member. Archived newsletters can be found HERE .
HRV Project: A powerful tool that helps ME patients avoid problematic crashes is HRV monitoring. With assistance from Dr. Eleanor Stein, MEI has started this project that will give a free HRV device to members who qualify. Dr Stein has provided some literature and assistance to help patients learn how to use this valuable tool.
Assistance for #pwME (people with ME): Each patient has unique needs in solving problems related to their current state of health. Our approach is to emphasize self-help (when the patient is able) recognizing that some severely ill patients may not have energy or financial resources. ME International has identified the following areas where assistance can make a difference: Emergency Relief Project, Patient Clinical Support, Comfort Gifts, and Social Support. See our Assistance page for more details.
Pulse Oximeter project: MEI has given hundreds of oximeters to its members free of charge. Heart rate (HR) numbers outside of typical readings are often an indicator of a pending crash. Being able to prevent crashes is key to improving overall function and quality of life. Recording HR and oxygen can provide your doctor with objective measurements to better understand ME.
MEI Chat Rooms on Facebook: ME is an isolating illness and patients often feel abandoned by friends and family who can struggle to understand the complexity of this disease. To combat isolation, we created these video chat rooms to offer our members a place to gather and connect to persons who understand their struggle.
Why Join ME International?
ME has been dismissed and misunderstood for decades and is only now getting some recognition. With a broader understanding of post-viral illnesses growing, it is critical to raise awareness and build partnerships in order to obtain meaningful treatment options. While we are cautiously optimistic about the future, ME is still largely sidelined in research despite this disease inflicting millions of people. We work every day to change this imbalance and improve the lives of ME sufferers.
We want this organization to be run by people who really care about this disease and want more than anything to find a CURE! Your support and participation can help make that happen. We appreciate our volunteers and any participation that helps us reach our goals. All positions at MEI are voluntary.
You can help change the fate of millions by joining in the struggle to raise awareness and be a positive change in their lives.
Join ME International and help make this dream a reality!
