International Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (IACFS/ME)
Legal name: International Association for Chronic Fatigue Syndrome-me
Nonprofit profile at a glance
- EIN
- 731416680
- IRS 990-EZ coverage
- 2012–2025
- Official website data refreshed
- Sep 2026
- Forms available
- Form 990 2016, Form 990-EZ 2025, Form 990-N 2019
- Location
- Stony Brook, NY, USA
- Phone
- (631) 623-0331
- Rating
- 65
- Verdict
- SUPPORTED
- Rating confidence
- Moderate
- Sector
- Birth Defects, Genetic Diseases Research
Reported finances
- Revenue
- $132,948
- Expenses
- $33,859
- Assets
- $455,782
- Liabilities
- $0
Source: IRS Form 990-EZ. Selected filing: tax year 2025. Amounts in USD.
Leadership & pay
7 people listed
Executive titles in this filing
- FRED FRIEDBERG (PRESIDENT)
- LILY CHU (VICE PRESIDENT)
People named in this filing
- FRED FRIEDBERG (PRESIDENT)
- LILY CHU (VICE PRESIDENT)
- CHARLES LAPP (TREASURER)
Selected names, not a complete roster or a statement of current roles. Open leadership details for the complete filed list.
Source: IRS Form 990-EZ. Selected filing: tax year 2025. Names and roles reflect this filing, not necessarily current officeholders.
Overview
Mission
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.
What it reported doing in 2025
Website/membership program - iacfs/me consists of clinicians, researchers, and patients/ families affected by me/cfs. Membership includes discounted conference registration/ journal subscription fees, access to an online journal club, and networking among members. Currently we have 149 members and 2000+ people on our e-mail list. Our website provides resources for clinicans, researchers, and the public about me/cfs and related conditions.
Operating model
- Revenue model
- Mixed. Its operating money came from several sources; no one source provided a clear majority.
- Distribution model
- Direct operator. The filing allocates 97% of reported program-service expenses outside its grant, affiliate-payment, and member-benefit lines. This expense classification does not rule out separately announced grant awards.
The verdict
SUPPORTED - The filed numbers largely add up and revenue comfortably covers expenses. A relatively small share of available resources goes toward mission work and program spending has declined or grown slowly.
Rating breakdown
- Financial Efficiency: 35
- Transparency & Controls: 100
- Sustainability: 91
- Growth: 60
Detailed rating inputs
Financial Efficiency
- Mission deployment rate: 16.3%; rating input score 16
- Program expense ratio: 67.3%; rating input score 67
Transparency & Controls
- Consistency checks: 100%; rating input score 100; 52nd percentile among comparable filings
- Major donor itemization: Yes; rating input score 100
Sustainability
- Operating margin: 74.5%; rating input score 97; 97th percentile among comparable filings
- Total-asset coverage ratio: 13.46; rating input score 99; 99th percentile among comparable filings
- Liabilities to assets ratio: 0; rating input score 74; 74th percentile among comparable filings
- Officer compensation ratio: 0%; rating input score 63; 63rd percentile among comparable filings
Growth
- Program expense growth: -4% per year; rating input score 0; 21st percentile among comparable filings
- Revenue growth: 3.4% per year; rating input score 100; 35th percentile among comparable filings
- Asset growth: 8.8% per year; rating input score 100; 55th percentile among comparable filings
Details
- What they do: 3 programs and campaigns described on the official site · 1 operating location identified
- Where the money goes: 16.3% of revenue deployed · 67.3% of spending went to programs
- Governance: Filed governance answers
- Accomplishments: 2 filed program accomplishments · $23K in reported program spending
- Leadership: top reported pay $0 · 7 people listed
- Consistency: 9 of 9 current checks pass
- Schedules: 4 filed schedules
- Filing history: 11 filing years from 2012 to 2025
- Contacts: How to reach this organization
- Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
- People: Everyone the filings name, and which of them the filings identify by more than a name.
Key Signals
Signals prioritize questions for review. They are not findings of misconduct.
- High — Financial Efficiency: Mission deployment rate scored 16/100.
- High — Growth: Program expense growth scored 0/100.