named programs · 3 · from sources
What they call their work
Clinician and Researcher Resource Hubs
Provides curated educational materials for healthcare providers and scientists, including diagnostic criteria, treatment guidelines, and research tools.
Fatigue: Biomedicine, Health, and Behavior
Quarterly, peer-reviewed journal published by IACFS/ME since 2013, covering ME/CFS and other fatigue-related conditions; available to members as part of membership benefits.
Scientific Conferences
Organizes and participates in local, national, and international conferences to promote, evaluate, and disseminate new research on ME/CFS and related conditions.
activities · 6 groups
What they do
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Disease-Specific Clinical & Patient Education 3 activities
- Develops and publishes clinical guidance and research resourcesCreated and published the 2014 IACFS/ME Clinician Primer, a comprehensive guide on diagnosis and management of ME/CFS, and maintains summaries and schedules from past conferences to support ongoing research and clinical education.
- Provides educational resources for patients and healthcare providersDistributes educational materials and resources for patients and caregivers to share with healthcare providers, and invites journalists to conferences to improve public understanding and dissemination of research findings on ME/CFS.
- Reviews and disseminates current research and treatment literaturePeriodically reviews and shares current research, treatment literature, and media reports on ME/CFS and fibromyalgia with scientists, clinicians, and patients to support informed care and research practices.
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Patient and Researcher Conferences 1 activity
- Organizes and hosts international scientific and clinical conferencesHosts biannual and annual multi-day conferences, both in-person and virtual, for scientists, clinicians, and professionals to advance knowledge on ME/CFS, fibromyalgia, and related conditions through research presentations, education, and networking. Conferences have been held in locations including Fort Lauderdale, San Francisco, Ottawa, and virtually, with high attendee satisfaction ratings reported.
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Rare Genetic Disease Research and Advocacy 1 activity
- Promotes science-based public health policies and advocacyAdvocates for science-based care, research, and public health policies related to ME/CFS and associated conditions to improve patient outcomes and systemic responses.
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Recognition and Awards Programs 1 activity
- Recognizes contributions to ME/CFS research and careEstablishes awards to recognize individuals for outstanding contributions to the organization’s mission of advancing research and care for ME/CFS and related conditions.
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Academic Journal and Scholarly Publication 1 activity
- publishes peer-reviewed research journal and newslettersProduces and distributes the quarterly peer-reviewed journal Fatigue: Biomedicine, Health, and Behavior, covering interdisciplinary research on ME/CFS and fatigue-related conditions, and publishes 3–4 newsletters per year to communicate developments in ME/CFS, Long COVID, and related conditions.
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Uncategorized 1 activity
- Conducts patient-centered research to inform regulatory agenciesConducted a patient-oriented survey in collaboration with Dr. Leonard Jason of DePaul University to collect data on symptoms, functional impact, and treatment effectiveness in ME/CFS, with the goal of informing the FDA and advancing patient-centered care.
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financials · form 990EZ · fy2025
revenue
Total revenue$133K
Contributions & grants$77K58%
Program service revenue$50K38%
Investment income$6K5%
Other revenue$0
expenses
Total expenses$34K
Program expenses—
Admin / overhead—
Fundraising—
Salaries & benefits$0
Grants paid out$750
balance sheet
Total assets$456K
Cash—
Investments—
Liabilities—
Net assets$456K
5 years on record · 2020–2025 · YoY revenue -19.9%
leadership · form 990 part vii · fy2025
Who runs it
board members · 4
- FRIDBJORN SIGURDSSON — BOARD MEMBER
- IRINA ROZENFELD — BOARD MEMBER
- LUIS NACUL — BOARD MEMBER
- TIMOTHY HSIAO — BOARD MEMBER
relationships · 9
Who they work with
- Centers for Disease Control and Prevention Government — Recognized chronic fatigue syndrome, providing institutional validation that the IACFS/ME leveraged during periods of limited medical recognition.
- DePaul University Partner — Collaborated with research team from DePaul University to conduct a patient survey for the FDA on ME/CFS symptoms and treatment effectiveness.
- Dr. Lea Höfel Partner — Editor of the IACFS/ME Newsletter and contributor to content development.
- National Institutes of Health Government — Recognized chronic fatigue syndrome, supporting the IACFS/ME's efforts to promote medical recognition and research.
- Stony Brook University Government — Accredited by the Accreditation Council for Continuing Medical Education to provide CME credits for the conference.
- Taylor and Francis Partner — Partnered with Taylor and Francis to publish the peer-reviewed journal Fatigue: Biomedicine, Health, and Behavior starting in 2013.
- Taylor and Francis Partner — publishing partner for the journal Fatigue: Biomedicine, Health, and Behavior
- US ME/CFS Clinician Coalition Network — Collaborates with and references resources from the US ME/CFS Clinician Coalition, including a clinician guide they produced.
- Zoom Partner — Uses Zoom as an online platform for hosting its virtual conference.
strategies · 3
How they approach the work
Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.
- Collaborative Knowledge Exchange to Advance ME/CFS Research and Caremethodology: collaborative_knowledge_exchangeBy fostering multidisciplinary collaboration and shared dialogue among researchers, clinicians, and patients, the organization advances scientific understanding and improves patient care for ME/CFS and related conditions, because collective expertise and diverse perspectives accelerate knowledge development and clinical innovation.
- Evidence-Based Dissemination and Translation Across Channelsmethodology: evidence_disseminationBy combining peer-reviewed research with rapid, accessible formats like newsletters and media engagement, the organization ensures timely and broad dissemination of scientific knowledge to clinical, patient, and public audiences, because diverse communication methods increase reach and uptake of evidence in varied communities.
- Patient-Centered, Science-Driven Clinical Frameworksmethodology: patient_centered_clinical_frameworkBy integrating scientific evidence, clinician expertise, and patient input into diagnostic criteria and management strategies such as activity pacing, the organization improves diagnostic accuracy and symptom management, because a triangulated, patient-informed approach enhances clinical relevance and patient engagement.