Leading Chronic Fatigue Syndrome Charities & Organizations

Whether you call it chronic fatigue syndrome, myalgic encephalomyelitis, ME/CFS, or CFIDS, this disease needs research for better treatments and diagnostics as well as heightened public awareness and acceptance. Research institutions are central to these goals, yet they have help from some incredibly important charitable organizations, too. Such organizations, listed below, work diligently to promote research and awareness with a goal of helping those with this potentially devastating illness to live a better life.

International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

The International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) notes that it is the largest international group of healthcare professionals dedicated to the care and research of people with ME/CFS. It advocates for increased government funding, awards grant money, and hosts conferences. Also, it publishes several newsletters a year and sponsors the peer-reviewed journal Fatigue: Biomedicine, Health, and Behavior.

The IACFS/ME offers memberships to doctors and other providers that give them access to their journal as well as discounted fees to the organization's conferences. For non-medical professionals, supporting memberships with similar benefits are available.

Quick facts on the IACFS/ME:

  • Founded: 1990 (as IACFS; ME was added in 2005)
  • Charity status: Oklahoma state not-for-profit organization, 501(c)3 non-profit
  • Location: Bethesda, Maryland

Mission statement:

The mission of the IACFS/ME is to promote, stimulate, and coordinate the exchange of ideas related to CFS, ME, and fibromyalgia (FM) research, patient care, and treatment. In addition, the IACFS/ME periodically reviews the current research, treatment literature, and media reports for the benefit of scientists, clinicians, and patients. The IACFS/ME also conducts and/or participates in local, national, and international scientific conferences in order to promote and evaluate new research and to encourage future research ventures and cooperative activities to advance scientific and clinical knowledge of these illnesses.

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The National CFIDS Foundation

CFIDS was a common name for this condition before ME/CFS became popular. It stands for "chronic fatigue and immune dysfunction syndrome."

The National CFIDS Foundation's goals are to help fund research towards the cause and treatments of this disease and, eventually, to help find a cure. It also works to provide information, education, and support to people with ME/CFS.

According to its website, this organization goes beyond simply funding research by digging into past discoveries that have not been shared or finding researchers with relevant expertise and funding their work in these areas. It's staffed entirely by volunteers and, along with ME/CFS, promotes research into related conditions, including Gulf War illness and multiple chemical sensitivity.

Quick facts on the National CFIDS Foundation:

  • Founded: 1997
  • Charity status: 501(c)3 non-profit
  • Location: Needham, Massachusettes

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ME-CFS Knowledge Center

The ME-CFS Knowledge Center offers a wide array of information and resources through its website with the aim of helping people who have not only ME/CFS, but also the related illnesses of fibromyalgia and Gulf War illness.

Quick facts on the ME-CFS Knowledge Center:

  • Charity status: 501(c)3 non-profit
  • Location: Loxahatchee, Florida

Mission statement:

Our mission is to provide those afflicted with severe fatigue, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), and related illnesses with a variety of resources from around the world with which to deal with these complex, and all too often, misdiagnosed conditions.

Resources for you:

  • Informational articles
  • Listing of support groups across the country
  • Listing of resources including healthcare providers and attorneys from across the country 
  • Extensive video library

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Solve ME/CFS Initiative

The Solve ME/CFS Initiative (SMCI) says it "works to accelerate the discovery of safe and effective treatments and strives for an aggressive expansion of funding toward a cure." It maintains a biobank and patient registry that helps bring participants and researchers together to make research easier and less expensive for researchers on top of making data from samples available to multiple studies.

SMCI's goals are to advance research on early detection of the disease, to better diagnostics, and to make more effective treatments. The organization focuses primarily on bioenergetics, immunity and inflammation, and neuroendocrine biology. And, it regularly awards money to researchers who work in these areas.

Quick facts on the SMCI:

  • Founded: 1987
  • Charity status: 501(c)3 non-profit
  • Location: Los Angeles, California

Mission statement:

Our mission is to make ME/CFS widely understood, diagnosable, and treatable. We will do this by stimulating participatory, patient-centered research aimed at the early detection, objective diagnosis, and effective treatment of ME/CFS through expanded public, private, and commercial investment.

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Simmaron Research

Simmaron Research focuses on pilot studies—small studies that show that certain lines of research are worth pursuing—which may be what attracts academic institutions, government funding, and interest from pharmaceutical companies to such topics.

Moreover, Simmaron maintains a repository of biological samples for researchers as well as information on more than 1,000 people with ME/CFS. It also collaborates with ME/CFS researchers around the world.

Quick facts on Simmaron Research:

  • Charity status: 501(c)3 non-profit
  • Location: Incline Village, Nevada

Mission Statement:

To conduct pilot studies that play a key role in the diagnosis, treatment, and understanding of CFS/ME and other neuroimmune diseases.

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Regional & International Organizations

A host of ME/CFS organizations serve local communities across the U.S. and around the world. For a detailed list of them, visit Organizations for Chronic Fatigue Syndrome and Myalgic Encephalomyelitis.

A Word From Verywell

Making donations to organizations such as these charities can be a wonderful gift for people in your life who have ME/CFS or battled this disease during their life. Charitable contributions also can be written into your will. Before you give money to any charity, however, make sure you research it to ensure that your donation is being used how you intended.

If you're among the fortunate ones who can donate, this list may help you find a worthwhile place to support. For those who aren't able to give money, you may be able to find other methods to help or promote these groups. Either way, you may be able to learn from them and benefit from the resources they offer.

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