ME International

Raising awareness, providing science based education and empowering patients.

Johnstown, CO   |  https://www.me-international.org

Mission

The purpose of ME (Myalgic Encephalomyelitis) International is to educate the general public, medical providers, and governments throughout the world about ME, and support ME patients, caregivers, advocates, organizations, family and friends. ME International recognizes ME as a neurological disease classified by the World Health Organization code of G93.3. ME is described in the International Consensus Primer for Medical Practitioners as "Profound dysfunction/dysregulation of the neurological control system result[ing] in faulty communication and interaction between the CNS and major body systems, notably the immune and endocrine systems, dysfunction of cellular energy metabolism and ion transport, and cardiac impairments."

Ruling year info

2019

President

James Lutey

Vice-President

David Steckel

Main address

1915 Windsong Dr

Johnstown, CO 80534 USA

Show more contact info

EIN

84-3568066

NTEE code info

Alliance/Advocacy Organizations (G01)

Specifically Named Diseases (G80)

IRS filing requirement

This organization is required to file an IRS Form 990-N.

Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Myalgic encephalomyelitis (ME) has been recognized in the U.S. since the 1950s. Since then, government institutions, including the CDC and NIH, and other non-government organizations have muddied the waters in its definition and the way it is addressed by the medical community. ME needs to be recognized as an immune and neurological dysfunction with severe exacerbation of systemic illness following any exertion, as described by the International Consensus Criteria.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Myalgic Encephalomyelitis (ME) and the ICC

Promote the International Consensus Criteria to properly define ME and educate patients, caregivers, and the medical community on how to diagnose and treat ME.

Population(s) Served
People with diseases and illnesses
Caregivers

Where we work

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

ME International wants the GLOBAL medical community to recognize ME as a distinct disease, and use the 2011 International Consensus Criteria to diagnose ME and its associative Primer to begin proper study of the disease, while addressing treatment of its symptoms.

From the IC Primer: "Myalgic encephalomyelitis, a name that originated in the 1950s, is the most accurate and appropriate name because it reflects the underlying multi-system pathophysiology of the disease. Our panel strongly recommends that only the name ‘myalgic encephalomyelitis’ be used to identify patients meeting the ICC because a distinctive disease entity should have one name. Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification."

ME International is educating ME patients and their medical community as to the proper way of defining ME and how to properly address the needs of the patients with it.

- By empowering/educating patients
- By assisting needy/severe ME patients
- By educating medical providers
- By supporting ME patients, caregivers, advocates, family and friends
- By alleviating loneliness
- By advocating on behalf of its membership, and
- By supporting research using the International Consensus Criteria

As of January 2022, ME International has over 500 members worldwide. Through distribution of the International Consensus Primer and its contents, ME International is educating its membership and their medical practitioners on proper diagnosis of myalgic encephalomyelitis.

Chat rooms have been created within Facebook so that patients and caregivers can converse and learn about the ICC, and at the same time make friends and gain much needed support.

ME International has actively commented on medical legislation in both the U.S. and U.K.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    MEI serves international patients with myalgic encephalomyelitis, their family members and caregivers, and the medical community that services them.

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), via chat groups on Facebook,

  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    We created a program to provide a free pulse oximeter to our members who request one. Since each unit is sent individually to international addresses, we have had to implement direct conversations with our membership to guarantee proper delivery.

  • With whom is the organization sharing feedback?

    The people we serve, Our board,

  • How has asking for feedback from the people you serve changed your relationship?

    ME International was created to interact directly with the patients who have myalgic encephalomyelitis. Feedback has always been requested and addressed so as to aid in the patients' medical well being.

  • Which of the following feedback practices does your organization routinely carry out?

    We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded,

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, The people we serve tell us they find data collection burdensome, It is difficult to find the ongoing funding to support feedback collection,

Financials

ME International
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

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ME International

Board of directors
as of 02/25/2022
SOURCE: Self-reported by organization
Board co-chair

James Lutey


Board co-chair

David Steckel

Colleen Steckel

Pam Lutey

Mary Kelley

Suzy Paulsen

Heather Seckinger

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? No
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? No
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? No
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No

Organizational demographics

SOURCE: Self-reported; last updated 1/23/2022

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

The organization's co-leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data