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Research Funding Analysis

Analyzing the disparity between disease burden and research investment

$48.1B

Total NIH Budget (FY2025)

0.3%

Invisible Illness Share

$120B/yr

Estimated Burden Cost

476x

HIV vs ME/CFS Funding Gap

NIH Funding Per Patient by Condition

Annual NIH research investment divided by estimated patient population. Invisible illnesses receive a fraction of comparable conditions.

HIV/AIDS

1.2M pts

Cancer

18.1M pts

1M pts

Long COVID

17.6M pts

Lyme Disease

2M pts

ME/CFS

3.3M pts

Fibromyalgia

10M pts

POTS

3M pts

Alpha-gal

450K pts

NIH Funding Trends (2015-2025)

Annual NIH investment in millions (USD) for invisible illness conditions. Long COVID shown on secondary context due to scale difference.

Funding Gap Score

Ratio of disease burden (DALYs, economic impact) to research investment. Higher scores indicate greater underfunding relative to burden. Scale: 0 (proportional) to 100 (extreme disparity).

Condition	DALYs	Economic Impact	NIH Funding	Gap Score	Severity
Alpha-gal Syndrome	890K	$1.2B	$0.9M	98.7	critical
POTS	2.4M	$15B	$9M	96.2	critical
ME/CFS	5.1M	$24B	$50M	94.8	critical
Fibromyalgia	7.3M	$32B	$14M	93.1	critical
Lyme Disease	3.8M	$18.6B	$154M	78.4	high
Long COVID	12.6M	$46B	$3.4B	52.3	moderate
Multiple Sclerosis	1.6M	$28B	$836M	31.5	low

Congressional Advocacy

Key Bills & Legislation

TICK Act

Active

Ticks: Identify, Control, and Knockout Act

Directs HHS to develop a national strategy for tick-borne diseases. Authorizes $150M over 5 years for research, surveillance, diagnostics, and education. Expanded in 2023 to include Alpha-gal Syndrome.

ME/CFS Appropriations

Pending

ME/CFS Research Expansion Act

Seeks to increase NIH funding for ME/CFS research to $200M annually (from current $50M). Mandates establishment of 10 new ME/CFS Centers of Excellence across the country.

RECOVER Initiative

Active

Researching COVID to Enhance Recovery

Largest NIH initiative ever for a post-infectious condition. Studies Long COVID mechanisms, treatments, and patient outcomes across 200+ sites. Controversial for slow progress and limited patient input.

AGS Awareness Act

Introduced

Alpha-gal Syndrome Awareness & Research Act

Would establish Alpha-gal Syndrome as a nationally notifiable condition, mandate dedicated ICD-10 coding, and fund surveillance infrastructure. Currently no dedicated tracking exists.

How to Contact Your Representatives

Find Your Rep

Visit house.gov/representatives or senate.gov/senators to find your elected officials by ZIP code.

Schedule a Meeting

Call your representative's district office to request a constituent meeting. In-person meetings are most impactful. Bring data from this dashboard.

Submit Written Testimony

Use the Advocacy Toolkit letter templates. Personalize with your own experience. Include data points from this funding analysis.

Advocacy Talking Points

1
NIH invests $7,143/patient for HIV/AIDS but only $15/patient for ME/CFS — a 476x disparity despite comparable disability burden
2
Invisible illnesses cost the US economy an estimated $120B/year in lost productivity, healthcare, and disability payments
3
Lyme disease affects 2M+ Americans annually, yet receives less NIH funding than a single clinical trial for many cancers
4
The RECOVER Initiative showed that infection-associated chronic conditions can attract federal attention — the model must expand to all invisible illnesses
5
Alpha-gal Syndrome has no ICD-10 code, making it literally invisible in surveillance data — we cannot treat what we cannot track
6
Patients with invisible illnesses wait an average of 4.6 years for diagnosis — earlier intervention could reduce costs by an estimated 35%

International Funding Comparison

How the US compares to other nations in invisible illness research investment

Country	Lyme $/Patient	ME/CFS $/Patient	Total Invisible Illness	Notes
USUnited States	$77	$15	$480M	Largest absolute spend but lowest per-patient for invisible illness
UKUnited Kingdom	$42	$28	£85M	NICE guidelines updated 2021; ME/CFS recognized as neurological
AUAustralia	$12	$45	A$62M	Dedicated ME/CFS research center (Emerge Australia); Lyme controversial
DEGermany	$134	$52	€210M	Highest Lyme per-patient spend; Charité ME/CFS center is world-leading

Patient-Advocacy Organization Funding Sources

How leading invisible illness advocacy organizations fund their operations (aggregate across 50+ orgs)

Explore Related Modules

National Dashboard

Aggregate economic burden

Advocacy Toolkit

Patient rights & letter templates

Policy Intelligence

Billing gaps & recommendations

Research Insights

Funding gaps & publication trends

Data Sources (3)

National Institutes of Health. NIH Research Portfolio Online Reporting Tools (RePORTER). 2025.
Centers for Disease Control and Prevention. Chronic Disease Indicators and Surveillance Data. 2024.
Congressional Budget Office. NIH Appropriations and Budget Analysis. 2025.

Research Funding Analysis

Analyzing the disparity between disease burden and research investment

$48.1B

Total NIH Budget (FY2025)

0.3%

Invisible Illness Share

$120B/yr

Estimated Burden Cost

476x

HIV vs ME/CFS Funding Gap

NIH Funding Per Patient by Condition

Annual NIH research investment divided by estimated patient population. Invisible illnesses receive a fraction of comparable conditions.

HIV/AIDS

1.2M pts

Cancer

18.1M pts

1M pts

Long COVID

17.6M pts

Lyme Disease

2M pts

ME/CFS

3.3M pts

Fibromyalgia

10M pts

POTS

3M pts

Alpha-gal

450K pts

NIH Funding Trends (2015-2025)

Annual NIH investment in millions (USD) for invisible illness conditions. Long COVID shown on secondary context due to scale difference.

Funding Gap Score

Ratio of disease burden (DALYs, economic impact) to research investment. Higher scores indicate greater underfunding relative to burden. Scale: 0 (proportional) to 100 (extreme disparity).

Condition	DALYs	Economic Impact	NIH Funding	Gap Score	Severity
Alpha-gal Syndrome	890K	$1.2B	$0.9M	98.7	critical
POTS	2.4M	$15B	$9M	96.2	critical
ME/CFS	5.1M	$24B	$50M	94.8	critical
Fibromyalgia	7.3M	$32B	$14M	93.1	critical
Lyme Disease	3.8M	$18.6B	$154M	78.4	high
Long COVID	12.6M	$46B	$3.4B	52.3	moderate
Multiple Sclerosis	1.6M	$28B	$836M	31.5	low

Congressional Advocacy

Key Bills & Legislation

TICK Act

Active

Ticks: Identify, Control, and Knockout Act

ME/CFS Appropriations

Pending

ME/CFS Research Expansion Act

Seeks to increase NIH funding for ME/CFS research to $200M annually (from current $50M). Mandates establishment of 10 new ME/CFS Centers of Excellence across the country.

RECOVER Initiative

Active

Researching COVID to Enhance Recovery

AGS Awareness Act

Introduced

Alpha-gal Syndrome Awareness & Research Act

Would establish Alpha-gal Syndrome as a nationally notifiable condition, mandate dedicated ICD-10 coding, and fund surveillance infrastructure. Currently no dedicated tracking exists.

How to Contact Your Representatives

Find Your Rep

Visit house.gov/representatives or senate.gov/senators to find your elected officials by ZIP code.

Schedule a Meeting

Call your representative's district office to request a constituent meeting. In-person meetings are most impactful. Bring data from this dashboard.

Submit Written Testimony

Use the Advocacy Toolkit letter templates. Personalize with your own experience. Include data points from this funding analysis.

Advocacy Talking Points

1
NIH invests $7,143/patient for HIV/AIDS but only $15/patient for ME/CFS — a 476x disparity despite comparable disability burden
2
Invisible illnesses cost the US economy an estimated $120B/year in lost productivity, healthcare, and disability payments
3
Lyme disease affects 2M+ Americans annually, yet receives less NIH funding than a single clinical trial for many cancers
4
The RECOVER Initiative showed that infection-associated chronic conditions can attract federal attention — the model must expand to all invisible illnesses
5
Alpha-gal Syndrome has no ICD-10 code, making it literally invisible in surveillance data — we cannot treat what we cannot track
6
Patients with invisible illnesses wait an average of 4.6 years for diagnosis — earlier intervention could reduce costs by an estimated 35%

International Funding Comparison

How the US compares to other nations in invisible illness research investment

Country	Lyme $/Patient	ME/CFS $/Patient	Total Invisible Illness	Notes
USUnited States	$77	$15	$480M	Largest absolute spend but lowest per-patient for invisible illness
UKUnited Kingdom	$42	$28	£85M	NICE guidelines updated 2021; ME/CFS recognized as neurological
AUAustralia	$12	$45	A$62M	Dedicated ME/CFS research center (Emerge Australia); Lyme controversial
DEGermany	$134	$52	€210M	Highest Lyme per-patient spend; Charité ME/CFS center is world-leading

Patient-Advocacy Organization Funding Sources

How leading invisible illness advocacy organizations fund their operations (aggregate across 50+ orgs)

Explore Related Modules

National Dashboard

Aggregate economic burden

Advocacy Toolkit

Patient rights & letter templates

Policy Intelligence

Billing gaps & recommendations

Research Insights

Funding gaps & publication trends

Data Sources (3)

National Institutes of Health. NIH Research Portfolio Online Reporting Tools (RePORTER). 2025.
Centers for Disease Control and Prevention. Chronic Disease Indicators and Surveillance Data. 2024.
Congressional Budget Office. NIH Appropriations and Budget Analysis. 2025.