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Research Grant Tracker

Tracking federal investment in invisible illness research -- NIH and agency funding for Lyme disease, Long COVID, ME/CFS, Fibromyalgia, POTS/Dysautonomia, and Alpha-gal Syndrome. Exposing funding gaps and advocating for equitable research allocation.

Total NIH Funding (2024)

$312M

Across all 6 tracked invisible illness conditions

Active Grants

847

R01, R21, U01, and P50 mechanisms combined

YoY Increase

23%

Driven primarily by Long COVID RECOVER funding

Conditions Tracked

Lyme, Long COVID, ME/CFS, Fibro, POTS, Alpha-gal

Funding by Condition

NIH funding allocation per invisible illness condition in 2024 (millions USD). Long COVID dominates due to the $1.15B RECOVER initiative.

Per-patient disparity: Long COVID receives $12/patient while ME/CFS receives only $3/patient -- despite similar symptom profiles and overlapping pathophysiology. Fibromyalgia receives approximately $1/patient for an estimated 10 million affected Americans.

Funding Trends (2019 - 2024)

Annual NIH funding by condition (millions USD). The Long COVID spike beginning in 2021 reflects the RECOVER initiative, while other conditions have seen only marginal increases.

Active Grant Directory

Notable NIH-funded research grants for invisible illness conditions. Filter by condition or NIH institute.

Condition:

NIH Institute:

14 grants shown

Grant Title	PI	Institution	Institute	Amount	Years	Status
Persistent Infection in Post-Treatment Lyme Disease Lyme Disease	Aucott, J.	Johns Hopkins University	NIAID	$3.2M	2022-2027	Active
RECOVER: Researching COVID to Enhance Recovery Long COVID	Fauci, A. (Multiple PIs)	NYU Langone (Coordinating)	NHLBI	$1.15B	2021-2025	Active
Metabolomic Profiling in ME/CFS ME/CFS	Naviaux, R.	UC San Diego	NINDS	$2.1M	2023-2028	Active
Central Sensitization Mechanisms in Fibromyalgia Fibromyalgia	Clauw, D.	University of Michigan	NIAMS	$1.8M	2022-2026	Active
Autoantibody-Mediated Autonomic Dysfunction in POTS POTS/Dysautonomia	Fedorowski, A.	Vanderbilt University	NHLBI	$1.4M	2023-2027	Active
Tick Saliva Alpha-gal Sensitization Pathways Alpha-gal Syndrome	Commins, S.	UNC Chapel Hill	NIAID	$980K	2023-2026	Active
Machine Learning for Lyme Disease Diagnostics Lyme Disease	Soloski, M.	Johns Hopkins University	NIAID	$2.4M	2023-2028	Active
Exercise Intolerance Biomarkers in ME/CFS ME/CFS	Systrom, D.	Brigham & Women's Hospital	NINDS	$1.6M	2022-2026	Active
Long COVID Neuroinflammation Imaging Study Long COVID	Nath, A.	NIH Intramural (NINDS)	NINDS	$4.7M	2021-2026	Active
Vagus Nerve Stimulation for Fibromyalgia Pain Fibromyalgia	Younger, J.	University of Alabama at Birmingham	NIAMS	$1.2M	2024-2028	Active
Pediatric POTS: Prevalence and Natural History POTS/Dysautonomia	Stewart, J.	New York Medical College	NICHD	$890K	2023-2027	Active
Borrelia burgdorferi Persistence Mechanisms Lyme Disease	Lewis, K.	Northeastern University	NIAID	$2.8M	2022-2027	Active
Microbiome-Immune Axis in Post-Infectious Syndromes Long COVID	Iwasaki, A.	Yale University	NIAID	$3.5M	2023-2028	Active
Lone Star Tick Ecology and Alpha-gal Spread Alpha-gal Syndrome	Ostfeld, R.	Cary Institute	NIAID	$1.1M	2024-2027	Active

Funding Gaps

Per-patient NIH funding for invisible illnesses compared to conditions with similar disease burden. These disparities reflect decades of systematic under-investment in conditions that are difficult to diagnose.

ME/CFS

Critical Gap

NIH funding: $3/patient

Comparable condition: HIV: $2,525/patient

842x less funding per patient

Affected population: ~3.3 million US

Lyme Disease

Significant Gap

NIH funding: $768/patient

Comparable condition: West Nile: $33,838/case

44x less funding per case

Affected population: ~476,000 new US cases/year

Fibromyalgia

Critical Gap

NIH funding: $1/patient

Comparable condition: Rheumatoid Arthritis: $121/patient

121x less funding per patient

Affected population: ~10 million US

POTS/Dysautonomia

Significant Gap

NIH funding: $5/patient

Comparable condition: Multiple Sclerosis: $251/patient

50x less funding per patient

Affected population: ~1.6 million US

How to Get Involved

Patients, caregivers, and advocates can drive change in research funding allocation. Here is how you can make a difference.

Participate in Clinical Trials

Search ClinicalTrials.gov for studies recruiting patients with your condition. Research advances depend on willing participants, and many trials offer access to experimental treatments.

Join Patient Registries

Enroll in condition-specific registries like MyLymeData (Lyme), IACFS/ME Registry (ME/CFS), or the Dysautonomia International Registry (POTS). Large datasets accelerate research breakthroughs.

Advocate for Funding Increases

Support organizations like the Solve ME/CFS Initiative, LymeDisease.org, and Dysautonomia International that lobby Congress for increased NIH appropriations for invisible illness research.

Write to Congress

Contact your representatives to support the TICK Act, ME/CFS Research Expansion Act, and increased NIH appropriations. Personal stories from constituents are the most effective advocacy tool.

Grant Application Resources

For researchers seeking NIH funding for invisible illness studies.

Funding Mechanisms

R01

Research Project Grant. Up to $500K/year for 3-5 years. Standard investigator-initiated research mechanism.

R21

Exploratory/Developmental Grant. Up to $275K over 2 years. Ideal for pilot studies and preliminary data generation.

U01

Cooperative Agreement. Larger multi-site studies with substantial NIH programmatic involvement.

Relevant Funding Opportunity Announcements (FOAs)

NIAID: Tick-Borne Disease Research (PAR-24-xxx) -- Lyme pathogenesis, diagnostics, therapeutics
NINDS: ME/CFS Collaborative Research Centers (RFA-NS-24-xxx) -- pathophysiology and biomarkers
NHLBI: RECOVER Supplement Awards -- Long COVID clinical trials and observational studies
NIAMS: Chronic Overlapping Pain Conditions (NOT-AR-24-xxx) -- fibromyalgia and comorbid pain

Key Study Sections

Applications for invisible illness grants are typically reviewed by: NIAID Clinical Research and Field Studies (CR&FS), NINDS Clinical Neuroplasticity and Neurotransmitters (CNN), NIAMS Musculoskeletal Rehabilitation Sciences (MRS), and the Special Emphasis Panels (SEPs) for post-infectious syndromes. Consider requesting assignment to condition-appropriate study sections in your cover letter.

Explore Related Modules

Funding Analysis

Research investment disparities

Research Insights

Funding gaps & publication trends

Clinical Trials

Find research opportunities

Advocacy Toolkit

Patient rights & letter templates

Data Sources (6)

National Institutes of Health. NIH RePORTER Funded Projects Database. 2024.
National Institutes of Health. RECOVER Initiative Public Dashboard. 2024.
U.S. Congress. Congressional Appropriations Reports for NIH. 2024.
Solve ME/CFS Initiative. Solve ME/CFS Initiative Funding Analysis. 2024.
Centers for Disease Control and Prevention. CDC Lyme Disease Surveillance Data. 2024.
Government Accountability Office. GAO Report on NIH Funding Allocation. 2023.

Research Grant Tracker

Total NIH Funding (2024)

$312M

Across all 6 tracked invisible illness conditions

Active Grants

847

R01, R21, U01, and P50 mechanisms combined

YoY Increase

23%

Driven primarily by Long COVID RECOVER funding

Conditions Tracked

Lyme, Long COVID, ME/CFS, Fibro, POTS, Alpha-gal

Funding by Condition

NIH funding allocation per invisible illness condition in 2024 (millions USD). Long COVID dominates due to the $1.15B RECOVER initiative.

Funding Trends (2019 - 2024)

Annual NIH funding by condition (millions USD). The Long COVID spike beginning in 2021 reflects the RECOVER initiative, while other conditions have seen only marginal increases.

Active Grant Directory

Notable NIH-funded research grants for invisible illness conditions. Filter by condition or NIH institute.

Condition:

NIH Institute:

14 grants shown

Grant Title	PI	Institution	Institute	Amount	Years	Status
Persistent Infection in Post-Treatment Lyme Disease Lyme Disease	Aucott, J.	Johns Hopkins University	NIAID	$3.2M	2022-2027	Active
RECOVER: Researching COVID to Enhance Recovery Long COVID	Fauci, A. (Multiple PIs)	NYU Langone (Coordinating)	NHLBI	$1.15B	2021-2025	Active
Metabolomic Profiling in ME/CFS ME/CFS	Naviaux, R.	UC San Diego	NINDS	$2.1M	2023-2028	Active
Central Sensitization Mechanisms in Fibromyalgia Fibromyalgia	Clauw, D.	University of Michigan	NIAMS	$1.8M	2022-2026	Active
Autoantibody-Mediated Autonomic Dysfunction in POTS POTS/Dysautonomia	Fedorowski, A.	Vanderbilt University	NHLBI	$1.4M	2023-2027	Active
Tick Saliva Alpha-gal Sensitization Pathways Alpha-gal Syndrome	Commins, S.	UNC Chapel Hill	NIAID	$980K	2023-2026	Active
Machine Learning for Lyme Disease Diagnostics Lyme Disease	Soloski, M.	Johns Hopkins University	NIAID	$2.4M	2023-2028	Active
Exercise Intolerance Biomarkers in ME/CFS ME/CFS	Systrom, D.	Brigham & Women's Hospital	NINDS	$1.6M	2022-2026	Active
Long COVID Neuroinflammation Imaging Study Long COVID	Nath, A.	NIH Intramural (NINDS)	NINDS	$4.7M	2021-2026	Active
Vagus Nerve Stimulation for Fibromyalgia Pain Fibromyalgia	Younger, J.	University of Alabama at Birmingham	NIAMS	$1.2M	2024-2028	Active
Pediatric POTS: Prevalence and Natural History POTS/Dysautonomia	Stewart, J.	New York Medical College	NICHD	$890K	2023-2027	Active
Borrelia burgdorferi Persistence Mechanisms Lyme Disease	Lewis, K.	Northeastern University	NIAID	$2.8M	2022-2027	Active
Microbiome-Immune Axis in Post-Infectious Syndromes Long COVID	Iwasaki, A.	Yale University	NIAID	$3.5M	2023-2028	Active
Lone Star Tick Ecology and Alpha-gal Spread Alpha-gal Syndrome	Ostfeld, R.	Cary Institute	NIAID	$1.1M	2024-2027	Active

Funding Gaps

ME/CFS

Critical Gap

NIH funding: $3/patient

Comparable condition: HIV: $2,525/patient

842x less funding per patient

Affected population: ~3.3 million US

Lyme Disease

Significant Gap

NIH funding: $768/patient

Comparable condition: West Nile: $33,838/case

44x less funding per case

Affected population: ~476,000 new US cases/year

Fibromyalgia

Critical Gap

NIH funding: $1/patient

Comparable condition: Rheumatoid Arthritis: $121/patient

121x less funding per patient

Affected population: ~10 million US

POTS/Dysautonomia

Significant Gap

NIH funding: $5/patient

Comparable condition: Multiple Sclerosis: $251/patient

50x less funding per patient

Affected population: ~1.6 million US

How to Get Involved

Patients, caregivers, and advocates can drive change in research funding allocation. Here is how you can make a difference.

Participate in Clinical Trials

Search ClinicalTrials.gov for studies recruiting patients with your condition. Research advances depend on willing participants, and many trials offer access to experimental treatments.

Join Patient Registries

Enroll in condition-specific registries like MyLymeData (Lyme), IACFS/ME Registry (ME/CFS), or the Dysautonomia International Registry (POTS). Large datasets accelerate research breakthroughs.

Advocate for Funding Increases

Support organizations like the Solve ME/CFS Initiative, LymeDisease.org, and Dysautonomia International that lobby Congress for increased NIH appropriations for invisible illness research.

Write to Congress

Contact your representatives to support the TICK Act, ME/CFS Research Expansion Act, and increased NIH appropriations. Personal stories from constituents are the most effective advocacy tool.

Grant Application Resources

For researchers seeking NIH funding for invisible illness studies.

Funding Mechanisms

R01

Research Project Grant. Up to $500K/year for 3-5 years. Standard investigator-initiated research mechanism.

R21

Exploratory/Developmental Grant. Up to $275K over 2 years. Ideal for pilot studies and preliminary data generation.

U01

Cooperative Agreement. Larger multi-site studies with substantial NIH programmatic involvement.

Relevant Funding Opportunity Announcements (FOAs)

NIAID: Tick-Borne Disease Research (PAR-24-xxx) -- Lyme pathogenesis, diagnostics, therapeutics
NINDS: ME/CFS Collaborative Research Centers (RFA-NS-24-xxx) -- pathophysiology and biomarkers
NHLBI: RECOVER Supplement Awards -- Long COVID clinical trials and observational studies
NIAMS: Chronic Overlapping Pain Conditions (NOT-AR-24-xxx) -- fibromyalgia and comorbid pain

Key Study Sections

Explore Related Modules

Funding Analysis

Research investment disparities

Research Insights

Funding gaps & publication trends

Clinical Trials

Find research opportunities

Advocacy Toolkit

Patient rights & letter templates

Data Sources (6)

National Institutes of Health. NIH RePORTER Funded Projects Database. 2024.
National Institutes of Health. RECOVER Initiative Public Dashboard. 2024.
U.S. Congress. Congressional Appropriations Reports for NIH. 2024.
Solve ME/CFS Initiative. Solve ME/CFS Initiative Funding Analysis. 2024.
Centers for Disease Control and Prevention. CDC Lyme Disease Surveillance Data. 2024.
Government Accountability Office. GAO Report on NIH Funding Allocation. 2023.