ME International
Raising awareness, providing science based education and empowering patients.
ME International
EIN: 84-3568066
as of November 2023
as of November 13, 2023
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
2019
President
David Steckel
Vice-President
James Davis
Main address
1915 Windsong Dr
Johnstown, CO 80534 USA
EIN
84-3568066
Brain and nervous system disorders
Irritable bowel syndrome
Heart and circulatory system diseases
Immune system diseases
Unknown or not classified
Population served
Parents
Caregivers
People with diseases and illnesses
NTEE code
Alliance/Advocacy Organizations (G01)
Specifically Named Diseases (G80)
IRS subsection
501(c)(3) Public Charity
IRS filing requirement
This organization is required to file an IRS Form 990-N.
Communication
Programs and results
Reports and documents
Download annual reportsWhat we aim to solve
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
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.
Where we work
External reviews
Videos
Our Sustainable Development Goals
Learn more about Sustainable Development Goals.
Goals & Strategy
Reports and documents
Download strategic planLearn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
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.
What are the organization's key strategies for making this happen?
- 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
What are the organization's capabilities for doing this?
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.
What have they accomplished so far and what's next?
Since 2021, ME International has provided 123 Pulse Oximeters free of charge to its members that need one. The use of a Pulse Oximeter can be especially useful for people with ME (Myalgic Encephalomyelitis). From the ME IC Primer: “A heart rate monitor can assist in keeping cardiovascular responses below the anaerobic threshold, resting heart rate is elevated in people with ME, and low blood volume can lead to elevated heart rate.” It helps to understand how ME affects the heart rate, therefore, we provide a flyer with each Pulse Oximeter that describes the importance of measuring heart rate for people with ME, and how to properly track it. This is an ongoing program...
How we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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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
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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
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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
Financial data
ME International
Revenue & expensesFiscal Year: 2021
SOURCE: Self-reported by organization
| Revenue | |
|---|---|
| Contributions, Grants, Gifts | $11,872 |
| Program Services | $0 |
| Membership Dues | $0 |
| Special Events | $0 |
| Other Revenue | $0 |
| Total Revenue | $24,763 |
| Expenses | |
|---|---|
| Program Services | $9,300 |
| Administration | $643 |
| Fundraising | $0 |
| Payments to Affiliates | $0 |
| Other Expenses | $0 |
| Total Expenses | $10,097 |
ME International
Balance sheetFiscal Year: 2021
SOURCE: Self-reported by organization
| Assets | |
|---|---|
| Total Assets | $24,763 |
| Liabilities | |
|---|---|
| Total Liabilities | $10,097 |
| Fund balance (EOY) | |
|---|---|
| Net Assets | $12,994 |
Operations
The people, governance practices, and partners that make the organization tick.
Documents
President
David Steckel
David is a Vet who retired from the DoD in 2017. He has a BS in Aerospace Engineering and an MS in Engineering with a focus on Product Assurance. During his time with the USAF he held many positions, including Environmental Restoration Division Chief which led him to a second Masters degree in Bioregional Planning. Adding to his active duty time in the mid-70s, Mr. Steckel volunteered for a year’s deployment in Afghanistan where he served as the Base Master Planner at Bagram Airbase, putting him in charge of inventorying and assigning all land parcels within its 3,700 acre expanse. He is currently a volunteer/member of veteran-based nonprofits Team Rubicon, Creative Dramatics Workshop Inc. and the Homer Volunteer Fire Dept.
His wife has been afflicted by myalgic encephalomyelitis for over 30 years. Having dealt with this disease directly, both he and his wife have dedicated themselves to bringing ME out of the shadows and educating the public, government and medical institutions.
Vice-President
James Davis
James was born and raised in the Midwest just outside of St Louis. Until recently, he lived in Western Colorado, but now calls Washington State his home. James was a Social Studies teacher until his ME cut his career short. When he could no longer teach, he decided to write novels to have something creative and productive to do while struggling with his ME. He has completed two novels and is working on the third in his trilogy. James currently enjoys spending time with photography and getting outdoors when possible. It took James well over a decade to be diagnosed with ME, and his experience discovering his illness created a desire to give back to the ME community.
There are no officers, directors or key employees recorded for this organization
There are no highest paid employees recorded for this organization.
ME International
Board of directorsas of 04/21/2023
Board of directors data
Pam Lutey
Mary Kelley
Heather Seckinger
James Lutey
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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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
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
No data
The organization's co-leader identifies as:
Race & ethnicity
Gender identity
Sexual orientation
No data
Disability
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