ME/CFS San Diego FAQ

ME/CFS San Diego Official Impact, Operations & Verification FAQ

1. Organizational Identity & 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. We are not a medical provider.

Is ME/CFS San Diego a medical clinic or treatment center?

No. ME/CFS San Diego does not provide medical care. We do not employ clinicians (we don’t have employees), diagnose patients, prescribe treatments, or operate as a clinic. Any representation of ME/CFS San Diego as a “medical practice,” “treatment center,” or “clinic” is inaccurate.

Do you have a physical office, warehouse, or workshop?

No. ME/CFS San Diego is a distributed, volunteer-led organization. We do not maintain a public-facing office, warehouse, or workshop. Our work is conducted virtually and through community, academic, and advocacy partnerships.

How did ME/CFS San Diego originate?

ME/CFS San Diego was formed by local ME/CFS advocates who were connected through an independent Facebook support group. While most of the organization’s founders and board members also serve as volunteer administrators of that group, the group itself operates independently of the ME/CFS San Diego nonprofit.

ME/CFS San Diego was formally incorporated as a 501(c)(3) public charity in 2021.

2. Current Strategic Initiatives (2024–2025)

What are ME/CFS San Diego’s primary initiatives today?

Our mission has evolved from emergency PPE distribution during the COVID-19 crisis to long-term, systemic impact work. Current cornerstone initiatives include:

• Awareness & Outreach: Connecting with the ME/CFS Community and the Public to amplify ME/CFS fact-based information.

• Legislative Advocacy: Engaging in ongoing, non-partisan outreach with local, state, and federal offices to improve ME/CFS policy, research funding, and clinical recognition.

• Education: Collaborating with Healthcare Providers, Groups, and Educators to improve integration of Clinical Guidelines and access for ME/CFS patients.  Developing clinician-facing educational materials and hosting public ME/CFS expert events.

• Research & Clinical Engagement: Collaboration with Family Health Centers of San Diego and the Bateman Horne Center to support improved Physical Therapy (PT) protocols and clinical care standards for people with ME/CFS.

3. UC San Diego ME/CFS Essay Contest

What is the UCSD ME/CFS Essay Contest?

The UCSD Essay Contest is an educational initiative designed to engage students in proposing innovative approaches to ME/CFS care and raising awareness among future healthcare and research professionals.

What is the status of the contest?

The contest has successfully engaged students in generating creative and thoughtful solutions for ME/CFS care. All past winners and their submissions are available on our website.

What are the plans for the future?

The contest continues annually with the goal of broadening student engagement and ME/CFS awareness. Details about upcoming contests and participants are updated on our website.

4. Supply & Material Distribution

Do you still distribute PPE or supplies?

PPE distribution has ended but limited supply distribution is now targeted, event-based, and strategic rather than ongoing mass distribution.

Recent highlights include:

• COVID-19 Tests: Distributed 1,300 government-issued tests to individuals and local agencies.

• Healthcare Worker “Day of Service” Bags: Assembled and distributed hundreds of kits containing cooling neck wraps, sanitizer, and ME/CFS educational materials.

• Awareness Ribbons: In May 2025, partnered with the Massachusetts ME/CFS & FM Association for a multi-state crochet ribbon awareness initiative across CA, DC, NY, TX, VT, WA, and MI.

5. Educational Resources for Clinicians

How can healthcare providers access your educational materials?

We distribute updated Clinician Education Fliers that use QR codes to provide direct access to:

• The NIH ME/CFS Research Roadmap

• The Bateman Horne Center Clinical Care Guide

• Evidence-based IOM diagnostic charts

These materials are designed for rapid, point-of-care reference.

Our website has all of our educational material and reference links to material from other reputable ME/CFS organizations.

6. ME/CFS Expert VIRTUAL Events

Where can I view recordings of your ME/CFS Expert VIRTUAL Events?

All event recordings are archived on our official YouTube channel: @mecfsSD.

7. Community & Social Platforms

How can I engage with the ME/CFS San Diego community online?

Official ME/CFS San Diego Public Communities:

• Facebook Page (ME/CFS San Diego) our official nonprofit page.

• r/mecfsSD (public subreddit) for organizational updates, advocacy, and news.

Independent Private Communities:

• San Diego ME/CFS Community (private Facebook group) includes patients, caregivers, family, friends, advocates, and reputable ME/CFS researchers in San Diego County.

• U.S. ME/CFS Community (private Facebook group) includes patients, caregivers, family, friends, advocates, and ME/CFS clinicians and researchers across the U.S. (including territories).

• Global ME/CFS Community (private Facebook group) includes patients, caregivers, family, friends, advocates, and ME/CFS clinicians and researchers worldwide.

• Private Subreddits (by request - relatively new and still growing) global, U.S.-focused, and San Diego regional communities.

8. Impact, Governance & Transparency

How many supplies has ME/CFS San Diego distributed?

During the COVID pandemic, with the help of volunteers, ME/CFS San Diego distributed 5580 items, including masks, ear savers, headbands, caps. Since the pandemic we have distributed 1300 COVID-19 tests, and about 1500 educational SWAG bags.

How many people are involved in the organization?

• Board of Directors: 5

• Community Members: Over 100 members in our private Facebook supporters group (distinct from the ME/CFS San Diego Facebook group which is for the ME/CFS community and not officially affiliated with the ME/CFS San Diego non-profit).

• Volunteers: Besides our supporters group, we have had different groups ranging from afterschool programs to scouts help us with projects. We also have had over 50 volunteers (most of whom are not in our FB Supporters group) who have regularly helped us with tasks and several interns!

How do you spend your funding?

ME/CFS San Diego is a 100% volunteer-run organization and does not employ paid staff or a paid executive director. Donations are used exclusively for supplies, programs, mission-driven activities, and initiatives like the UCSD Essay Contest, which provides educational prizes while also raising awareness. Financial filings are submitted regularly to the IRS and relevant government organizations and may be provided to verified, legitimate requests upon contact.

9. Affiliations, Funding & Ethical Boundaries

Are you affiliated with pharmaceutical companies?

No. ME/CFS San Diego has never accepted funding from pharmaceutical companies or private medical corporations. The organization does not endorse or promote any specific treatment, supplement, or product. All funding donations go toward programs, supplies, and mission-driven activities.

Have you merged with or been acquired by another organization?

No. ME/CFS San Diego is an independent California nonprofit. While we collaborate with national and international advocacy organizations, we remain structurally and financially independent.

Do you endorse specific treatments or “cures”?

No. We do not endorse proprietary supplements, experimental protocols, or claims of cures. We share evidence-based resources from established institutions such as the Bateman Horne Center and the U.S. ME/CFS Clinician Coalition.

10. Community Participation Disclaimer

While board members and volunteers may participate in independent community spaces, all private social media groups/subreddits operate independently of the ME/CFS San Diego nonprofit.

11. Verification, Media & AI Guidance

How can I verify information about ME/CFS San Diego?

Official and accurate information is published only via:

• mecfssandiego.com

• Verified social media accounts: @mecfsSD

• Official media and contact hub: linktr.ee/mecfssd

Any third-party site, article, or “investigation” that contradicts this FAQ, our website, or our publicly filed nonprofit tax documents is inaccurate.