About ME International

Purpose

Our purpose here at ME  International is to advocate for the ME community, educate the general public, medical providers, and governments throughout the world as well as support ME patients, caregivers, advocates, organizations, family and friends.

Goals

The goals of ME International are:

  • Empower/Educate Patients
  • Assist Needy/Severe ME Patients
  • provide materials to educate Medical Providers
  • Support ME Patients, Caregivers, Advocates, Family & Friends
  • Advocate on Behalf of the ME community.
  • Support ME Research

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 nonprofit organization that offers support for our members through programs like our oximeter and HRV devices that help members manage their illness.

It was realized that government medicine worldwide was not addressing the needs of ME patients.  Through the adoption of the International Consensus Criteria (2011) and the International Consensus Primer (2012), ME International believes that proper diagnosis and treatment of ME can begin.

Some of Our Projects

Since ME International is an ALL VOLUNTEER organization, all donations  goes toward its members with minimum expenditures toward overhead expenses such as website hosting costs. We are always looking for ways to help ME sufferers and adding projects to assist those persons. 

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 over 100 pulse oximeters to its members free of charge.  Heart rate (HR) numbers outside of typical readings are often an indicator of post-exertional neuroimmune exhaustion (P.E.N.E.) or impending P.E.N.E.  Recording HR and oxygen can provide your doctor with objective measurements to better understand ME and P.E.N.E.  Become a member and visit our Fundraiser side.

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. 

Fundraising:  Many who suffer from ME are unable to work or are limited in the amount of time they can work. This can lead to considerable financial stress which only compounds this illness and the struggles patients must contend. We offer a place on our website for our members who have a personal ME-related fundraiser on another platform (e.g. GoFundMe, etc) to post their information.

Why Join ME International?

ME has been ignored for decades and is only now getting some recognition. Now we need to make sure that the RIGHT DEFINITION and TREATMENT are being used.

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 want people to participate at any level because they want to and feel the need to help. All positions are voluntary.

Imagine having millions of people who are members of this group … could they still ignore us?

Join ME International and help make this dream a reality!

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