Is it real?
Yes. Exemption reinstated (2017-05-15). Per the IRS revocation list. Latest filing on record: FY2024. IRS ruling in Jun 2017.
IRS Pub. 78 · IRS Auto-Revocation List · IRS Business Master File
Where the money goes
50 cents of each dollar spent went to programs.
Form 990 Part IX, line 25, columns B–D. Every line is in By the numbers.
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Who runs it and what they're paid
8 people listed on the 990.
Laurie Jones’s $75K as Executive Director is at the 59th percentile of top reported officer pay among 901 $100K–1M diseases & disorders nonprofits. Peer set: organizations in the same NTEE major field of work and revenue-size band, compared on each org’s own highest-paid officer/key-employee, from Form 990 Part VII / 990-PF Part VIII. Descriptive placement, not a verdict on whether the pay is appropriate.
Compensation history total reportable pay by year · 4 named individuals · Part VII
| Name | FY2024 | FY2024 | FY2023 | FY2022 | FY2021 |
|---|---|---|---|---|---|
| Julie Miele | — | — | — | $104,461 | — |
| Laurie Jones | $75,450 | $93,525 | $75,000 | — | — |
| Laurie Jones - Interim | — | — | — | $75,000 | — |
| Jen Brea | — | — | — | — | $36,346 |
Total reportable compensation (Form 990 Part VII column D / Schedule J column E) by filing year, matched by name within this organization. The Schedule J base / bonus / deferred breakdown is not parsed into this dataset.
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Questions the 990 asks
The form asks each of these directly. These are the filed answers.
- Family or business ties among officersPt VI · Ln 2No
- Top official's pay set by an independent reviewPt VI · Ln 15aNo
- Loans to or from officersSch L · Pt II1 listed
Programs and updates
Advocates for recognition, education, and research to improve care for people with ME.
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Research and Medical
We aim to grow the scientific field through outreach, education and fellowship opportunities for young investigators, and by empowering patients to understand, engage with and participate in research.
Digital Advocacy and Awareness
Advocacy is a cornerstone of our work at #meaction. Every year, we take decisive steps to strengthen our voice with the us government through the national institutes of health, the center for disease control & prevention, and the department of health and human services.
#millionsmissing
#millionsmissing is our global effort to raise awareness and achieve rights for ME/CFS patients. Since 2016, we have banded together every year in nearly 100 locations around the globe as a community of people with ME/CFS, caregivers and allies to raise awareness and advocate for action: millions are missing from their careers, schools…
Funders
Who pays for it.
From grant filings on record. Receipts are incomplete: individual donors are never listed.
Grants
By the numbers
The FY2020 990, line by line.
Download 990
| Line | Start FY20 | End FY20 |
|---|---|---|
| Cash and savingsLn 1–2 | $76K | $112K |
| Total assetsLn 16 | $88K | $115K |
| LiabilitiesLn 26 | $9K | $99K |
| Net assetsLn 32 | $79K | $16K |
| Line | Total | Programs | Management | Fundraising |
|---|---|---|---|---|
| Other salaries and wagesLn 7 | $385K | $254K | $86K | $44K |
| Other employee benefitsLn 9 | $8K | $8K | ||
| Payroll taxesLn 10 | $31K | $20K | $7K | $4K |
| Management feesLn 11a | $50K | $50K | ||
| Legal feesLn 11b | $1K | $1K | ||
| Accounting feesLn 11c | $15K | $15K | ||
| Professional fundraising feesLn 11e | $8K | $8K | ||
| Other fees for servicesLn 11g | $103K | $75K | $22K | $6K |
| Office expensesLn 13 | $13K | $3K | $10K | |
| Information technologyLn 14 | $73K | $11K | $39K | $24K |
| OccupancyLn 16 | $19K | $19K | ||
| TravelLn 17 | $2K | $436 | $2K | |
| Conferences, conventions and meetingsLn 19 | $1K | $1K | ||
| Other expenses (24a–d)Ln 24 | $11K | $7K | $3K | |
| All other expensesLn 24e | $4K | $30 | $3K | $400 |
| Total functional expensesLn 25 | $723K | $365K | $269K | $89K |
Filing history
| Year | Money in | Money out | In minus out | Net assets | Download |
|---|---|---|---|---|---|
| FY2024 | $694K | $690K | $3K | $142K | 990 PDF |
| FY2023 | $860K | $725K | $135K | $139K | 990 PDF |
| FY2022 | $710K | $653K | $56K | $2K | 990 PDF |
| FY2021 | $582K | $653K | −$71K | −$54K | 990 PDF |
| FY2020 Viewing | $661K | $723K | −$62K | $16K | 990 PDF |
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Schedules filed Part IV
See the full FY2020 990 (4 parts)
Part VIII · Statement of revenue $660,584 across 4 lines filed
Part IX · Statement of functional expenses $722,836 across 15 lines filed
Part X · Balance sheet $115,038 assets, 10 lines filed
Part XI · Reconciliation of net assets $16,355 net assets at year end
Form 990 e-file (XML) FY2020 from the IRS · Classification, formation year and address from the IRS Business Master File
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