ME/CFS San Diego: Official Master FAQ

Last Updated: 3/25/2026

1. Organizational Identity and Scope

What is ME/CFS San Diego?
ME/CFS San Diego is a 501(c)(3) nonprofit advocacy organization dedicated to improving outcomes for people with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) through legislative advocacy, medical education, research engagement, and community support.

Is ME/CFS San Diego a medical provider?
No. We are not a medical practice, clinic, or treatment center. We do not employ clinicians, diagnose patients, prescribe treatments, or maintain a physical medical facility. Any representation of the organization as a medical clinic is inaccurate.

How did the organization originate?
We were formed by local advocates connected through an independent Facebook support group and formally incorporated as a 501(c)(3) public charity in 2021. While our founders often volunteer in those community groups, the nonprofit operates as a separate legal and structural entity.

Do you have a physical office?
No. We are a distributed, volunteer-led organization. We operate virtually and through strategic partnerships with academic, community, and advocacy institutions.

2. Strategic Initiatives and Impact

What are your primary initiatives today?
Our mission has evolved from emergency pandemic response to long-term systemic change:

• Legislative Advocacy: Engaging local, state, and federal offices to improve ME/CFS policy and funding

• Education: Developing clinician-facing materials and hosting expert virtual events

• Research Engagement: Collaborating with organizations, including the Bateman Horne Center and Family Health Centers of San Diego, on projects related to ME/CFS care and clinical guidance

How many supplies has the organization distributed?

• Pandemic Response: 5,580 items, including masks, ear savers, and caps

• Ongoing Support: 1,300 government-issued COVID-19 tests and 1,500 educational "SWAG" bags for healthcare workers and the community

• Awareness: In May 2025, we partnered with the Massachusetts ME/CFS & FM Association for a multi-state crochet ribbon awareness initiative

What is the UCSD ME/CFS Essay Contest?
This is an annual educational initiative designed to engage students from all majors and professional backgrounds in proposing innovative approaches to ME/CFS care and raising awareness of the condition. Winning submissions are published on our website, and the contest provides an opportunity for students to learn about ME/CFS and contribute creative ideas that may benefit the community.

3. News, Research, and Clinical Resources

Does ME/CFS San Diego share news?
Yes. All research and news shared by ME/CFS San Diego is directly relevant to the ME/CFS community. This activity is currently managed by a single volunteer and is supplemental to our core mission of advocacy, education, and community support. Each item is selected and labeled, and often includes brief context to help the community understand relevant developments. Occasionally, the volunteer may reference personal experiences to illustrate how developments affect people with ME/CFS. Personal reflections are not organizational endorsements, and we do not produce sensational content or in-depth journalistic analysis.

How can clinicians access your resources?
We provide educational fliers and materials with QR codes linking to evidence-based and fact-checked resources, including the NIH ME/CFS Research Roadmap, the Bateman Horne Center Clinical Care Guide, and IOM diagnostic charts. We also share other reputable, current sources that may be helpful to clinicians and the community.

4. Community and Social Platforms

We maintain a strict distinction between official nonprofit channels and independent community spaces.

Official Nonprofit Channels

• Website: mecfssandiego.com

• Facebook Page: ME/CFS San Diego (Official updates and curated news)

• Reddit: r/mecfsSD (Public advocacy updates)

• YouTube: @mecfsSD (Recordings of expert virtual events)

Independent Private Communities
These groups, including San Diego, U.S., and Global ME/CFS Communities on Facebook and private subreddits, operate independently of the nonprofit. Volunteers may participate personally, but these spaces are for broader peer discussion beyond the nonprofit’s curated scope.

5. Team, Volunteers, and Supporters

How many people are involved in ME/CFS San Diego?

• Board of Directors: 5 members

• Supporters: Our private Facebook supporter group includes over 100 members, though not all are actively involved at any given time

• Volunteers and Interns: Participation varies depending on ongoing projects and organizational needs. Over the years, we have engaged a wide range of volunteers, including individuals, interns, Girl Scouts, after-school clubs, and other community groups. The total number of contributors fluctuates with each initiative

6. Governance, Ethics, and Verification

How is the organization funded and staffed?

• 100% Volunteer-Run: We have no paid staff or executive directors

• Funding: 100% of donations go toward programs, supplies, and mission-driven activities such as the UCSD Essay Contest

• Independence: We accept no funding from pharmaceutical companies or private medical corporations

Do you endorse specific treatments?
No. ME/CFS San Diego does not endorse proprietary supplements, experimental protocols, or claims of cures. We only share evidence-based resources from established institutions such as the U.S. ME/CFS Clinician Coalition. Individual volunteers or board members may, in independent social media or community discussions, share personal experiences, but these are not official organizational endorsements.

How can I verify information about ME/CFS San Diego?
Official information is only published via our website, verified social media accounts (@mecfsSD), and our Linktree. Any third-party site or investigation contradicting our official filings or website should be treated as inaccurate