Disease, Disorders, Medical Disciplines

Solve ME/CFS Initiative, Inc.

Leading the fight to cure ME/CFS

aka Solve ME/CFS Initiative

Los Angeles, CA

Mission

The Solve ME/CFS Initiative (SMCI), is the only ME/CFS not-for-profit solely focused on scientific research and advocacy to solve myalgic encephalomyelitis (ME), sometimes referred to as chronic fatigue syndrome (CFS). Our mission is to make ME/CFS understood, diagnosable and treatable. We believe that the best way to serve patients is to solve this debilitating disease by investing in promising research and fostering an environment for scientific collaboration.

Ruling Year

1991

President and CEO

Ms. Carol Head

Main Address

5455 Wilshire Blvd Suite 1903

Los Angeles, CA 90036 USA

Keywords

ME/CFS, CFS, chronic fatigue syndrome, SolveCFS, CFIDS, health, CFIDS Association of America, CFIDS Association

EIN

56-1683450

 Number

5791956319

Cause Area (NTEE Code)

Diseases, Disorders, Medical Disciplines N.E.C. (G99)

Specifically Named Diseases Research (H80)

Alliance/Advocacy Organizations (H01)

IRS Filing Requirement

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

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Social Media

Programs + Results

What we aim to solve New!

Myalgic Encephalomyelitis (ME), sometimes referred to as Chronic Fatigue Syndrome (CFS), is a chronic, complex, multi-systemic disease that profoundly limits the health and productivity of patients. It affects up to 2.5 million Americans and as many as 20 million people worldwide. There are currently no FDA-approved treatments and there is no cure.

Our programs

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

SOURCE: Self-reported by organization

ME/CFS Research

ME/CFS Education

Where we workNew!

Our Results

How does this organization measure their results? It's a hard question but an important one. These quantitative program results are self-reported by the organization, illustrating their committment to transparency, learning, and interest in helping the whole sector learn and grow.

SOURCE: Self-reported by organization

RESEARCH: Number of research studies funded

TOTALS BY YEAR
Population(s) served

General/Unspecified

Related program

ME/CFS Research

Context notes

We design and invest in scientific studies to address severe knowledge gaps in ME/CFS. Ares include bioenergetics, neuroendocrine biology, gut microbiome, genetics, inflammation and immunity.

Charting Impact

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

SOURCE: Self-reported by organization

What is the organization aiming to accomplish?

What are the organization's key strategies for making this happen?

What are the organization's capabilities for doing this?

How will they know if they are making progress?

What have and haven't they accomplished so far?

Our goals include:
1) finding an reliable biomarker that will lead to accurate diagnosis of ME/CFS
2)conducting research that will lead to the development of an FDA approved treatment for ME/CFS
3)ultimately finding a cure for ME/CFS

We have a multi-pronged strategy to Solve ME/CFS that includes:
1) support rigorous and thorough research
2) educate the medical community about research advances
3) partnering with thought leaders and policy makers to facilitate advanced research
4) amplifying the voice of patients in participatory research
5)reduce barriers to research by making materials and know-how readily accessible

Solve ME/CFS is a non-profit disease organization that works to accelerate the discovery of safe and effective treatments, strives for an aggressive expansion of funding for research that will lead to a cure and seeks to engage the entire ME/CFS community in research. Through scientific research and advocacy, SMCI serves patients and researchers alike, serving as an information center for the entire ME/CFS community, and enabling SMCI to make an even stronger case for federal government ME/CFS spending, by generating verifiable and large data sets with reliable metrics.

There are many measures for progress including:
1) Acknowledgement by our government that ME/CFS is a real and under-served disease
2) Increasing the number of qualified ME/CFS scientists and researchers
3) Changing federal policy that is more favorable to ME/CFS
4) Increased federal funding for ME/CFS

The 2015 IOM report and NIH's Pathways to Prevention report signal a change in attitude and mindset by our federal government towards ME/CFS. Both highly respected institutions reported that ME/CFS has been misunderstood and under-funded for far too long. Solve ME/CFS Initiative has been integral in influencing this change. Solve ME/CFS Initiative is working closely with the NIH to help shape the overall research strategy for ME/CFS. We are currently supporting 13 international research studies.


External Reviews

Awards & Accreditations

Better Business Bureau Wise Giving Alliance

Photos

Financials

Solve ME/CFS Initiative, Inc.

Fiscal year: Jan 01 - Jun 30

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  • Address, phone, website and contact information
  • Forms 990 for 2017, 2016 and 2016
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Operations

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

Need more info?

FREE: Gain immediate access to the following:

  • Address, phone, website and contact information
  • Forms 990 for 2017, 2016 and 2016
A Pro report is also available for this organization for $125.
Click here to see what's included.

Board Leadership Practices

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices.

SOURCE: Self-reported by organization

BOARD ORIENTATION & 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?

Yes

CEO OVERSIGHT

Has the board conducted a formal, written assessment of the chief executive within the past year?

Yes

ETHICS & TRANSPARENCY

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year?

Yes

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?

Yes