Trial Outcomes & Findings for Myalgic Encephalomyelitis Chronic Fatigue at the National Institutes of Health (NCT NCT02669212)

NCT ID: NCT02669212

Last Updated: 2023-04-18

Results Overview

The Relative Volume of Oxygen at the Anaerobic Threshold (ATVO2rel) was determined during a cardiopulmonary exercise test (CPET). ATVO2rel represents the volume of oxygen being consumed when a participant reaches AT, adjusted for their weight during the CPET. Results compared Healthy Volunteer Participants to ME/CFS Participants.

Recruitment status

COMPLETED

Study phase

NA

Target enrollment

52 participants

Primary outcome timeframe

At time of AT during CPET

Results posted on

2023-04-18

Participant Flow

Participants were either referred to study investigators by their primary care physician or were self-referred either through the Patient Recruitment and Public Liaison (PRPL) office or direct contact. Interested participants were contacted by telephone to evaluate eligibility. Eligible participants were subsequently seen at the NIH Clinical Center for study visits. Recruitment began February 2016 and ended February 2020.

Participants underwent telephone screening followed by a medical record review/discussion with the participant's physician to determine general eligibility. Participants were invited to campus to determine if they met inclusion/exclusion criteria for the phenotyping phase of the study. After the phenotyping visit, results were reviewed by a panel of expert adjudicators to determine case status and eligibility for the exercise phase of the protocol. No Lyme disease participants were recruited.

Participant milestones

Participant milestones
Measure
Healthy Volunteer Participants
Participants found to be healthy after a medical and psychiatric evaluation.
ME/CFS Participants
Participants with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Overall Study
STARTED
25
27
Overall Study
COMPLETED
21
17
Overall Study
NOT COMPLETED
4
10

Reasons for withdrawal

Reasons for withdrawal
Measure
Healthy Volunteer Participants
Participants found to be healthy after a medical and psychiatric evaluation.
ME/CFS Participants
Participants with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Overall Study
Lost to Follow-up
1
0
Overall Study
Medical Condition
3
4
Overall Study
Withdrawal by Subject
0
2
Overall Study
Excluded - determined NOT post-infectious
0
4

Baseline Characteristics

Myalgic Encephalomyelitis Chronic Fatigue at the National Institutes of Health

Baseline characteristics by cohort

Baseline characteristics by cohort
Measure
Healthy Volunteer Participants
n=25 Participants
Participants found to be healthy after a medical and psychiatric evaluation.
ME/CFS Participants
n=27 Participants
Participants with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Total
n=52 Participants
Total of all reporting groups
Age, Categorical
<=18 years
0 Participants
n=5 Participants
0 Participants
n=7 Participants
0 Participants
n=5 Participants
Age, Categorical
Between 18 and 65 years
25 Participants
n=5 Participants
27 Participants
n=7 Participants
52 Participants
n=5 Participants
Age, Categorical
>=65 years
0 Participants
n=5 Participants
0 Participants
n=7 Participants
0 Participants
n=5 Participants
Age, Continuous
42.24 Years
STANDARD_DEVIATION 13.46 • n=5 Participants
37.82 Years
STANDARD_DEVIATION 14.72 • n=7 Participants
40.35 Years
STANDARD_DEVIATION 13.48 • n=5 Participants
Sex: Female, Male
Female
13 Participants
n=5 Participants
13 Participants
n=7 Participants
26 Participants
n=5 Participants
Sex: Female, Male
Male
12 Participants
n=5 Participants
14 Participants
n=7 Participants
26 Participants
n=5 Participants
Ethnicity (NIH/OMB)
Hispanic or Latino
2 Participants
n=5 Participants
2 Participants
n=7 Participants
4 Participants
n=5 Participants
Ethnicity (NIH/OMB)
Not Hispanic or Latino
23 Participants
n=5 Participants
25 Participants
n=7 Participants
48 Participants
n=5 Participants
Ethnicity (NIH/OMB)
Unknown or Not Reported
0 Participants
n=5 Participants
0 Participants
n=7 Participants
0 Participants
n=5 Participants
Race (NIH/OMB)
American Indian or Alaska Native
0 Participants
n=5 Participants
0 Participants
n=7 Participants
0 Participants
n=5 Participants
Race (NIH/OMB)
Asian
0 Participants
n=5 Participants
2 Participants
n=7 Participants
2 Participants
n=5 Participants
Race (NIH/OMB)
Native Hawaiian or Other Pacific Islander
0 Participants
n=5 Participants
0 Participants
n=7 Participants
0 Participants
n=5 Participants
Race (NIH/OMB)
Black or African American
1 Participants
n=5 Participants
0 Participants
n=7 Participants
1 Participants
n=5 Participants
Race (NIH/OMB)
White
21 Participants
n=5 Participants
25 Participants
n=7 Participants
46 Participants
n=5 Participants
Race (NIH/OMB)
More than one race
3 Participants
n=5 Participants
0 Participants
n=7 Participants
3 Participants
n=5 Participants
Race (NIH/OMB)
Unknown or Not Reported
0 Participants
n=5 Participants
0 Participants
n=7 Participants
0 Participants
n=5 Participants

PRIMARY outcome

Timeframe: At time of AT during CPET

Population: COVID-19 pandemic halted return visit for participation in Exercise Phase of trial.

The Relative Volume of Oxygen at the Anaerobic Threshold (ATVO2rel) was determined during a cardiopulmonary exercise test (CPET). ATVO2rel represents the volume of oxygen being consumed when a participant reaches AT, adjusted for their weight during the CPET. Results compared Healthy Volunteer Participants to ME/CFS Participants.

Outcome measures

Outcome measures
Measure
Healthy Volunteers
n=9 Participants
Participants found to be healthy after a medical and psychiatric evaluation who completed the Cardiopulmonary Exercise Test (CPET).
ME/CFS Participants
n=9 Participants
ME/CFS Participants who complete the Cardiopulmonary Exercise Test (CPET)
Cardiopulmonary Exercise Test (CPET) - ATVO2rel
16.0 mL/kg/min
Standard Deviation 4.3
10.6 mL/kg/min
Standard Deviation 3.8

PRIMARY outcome

Timeframe: At time of AT during CPET

The Respiratory Exchange Ratio (VCO2/VO2) was determined during a cardiopulmonary exercise test (CPET). VCO2/VO2 is calculated by measuring the volume of carbon dioxide and oxygen the participant breathes during CPET. When the volume of carbon dioxide exceeds that of oxygen, it reflects a change from aerobic metabolism to anaerobic metabolism. When a participant has a Respiratory Exchange Ratio (RER) during CPET that is equal or greater than 1.1 it is considered a sufficient exercise effort. Results compared Healthy Volunteer Participants to ME/CFS Participants.

Outcome measures

Outcome measures
Measure
Healthy Volunteers
n=9 Participants
Participants found to be healthy after a medical and psychiatric evaluation who completed the Cardiopulmonary Exercise Test (CPET).
ME/CFS Participants
n=9 Participants
ME/CFS Participants who complete the Cardiopulmonary Exercise Test (CPET)
Cardiopulmonary Exercise Test (CPET) - RER
1.3011 Ratio
Standard Deviation 0.0791
1.2415 Ratio
Standard Deviation 0.1156

OTHER_PRE_SPECIFIED outcome

Timeframe: 12 hours

Population: Procedure added to Phenotyping Phase after enrollment started.

The total amount of energy expended per unit of time as measured by whole-room indirect calorimetry. This method measures the amount of oxygen consumed and carbon dioxide produced which can be used to calculate the amount of energy produced by biological oxidation and is measured by kilocalories per day. Measures were taken from Healthy and ME/CFS participants.

Outcome measures

Outcome measures
Measure
Healthy Volunteers
n=11 Participants
Participants found to be healthy after a medical and psychiatric evaluation who completed the Cardiopulmonary Exercise Test (CPET).
ME/CFS Participants
n=16 Participants
ME/CFS Participants who complete the Cardiopulmonary Exercise Test (CPET)
Characterization of Total Body Energy Use (Bioenergetics/Metabolic)
1858.9 kcal/day
Standard Deviation 353.3
1862.1 kcal/day
Standard Deviation 390.5

OTHER_PRE_SPECIFIED outcome

Timeframe: Baseline

Blood and CSF were collected from healthy and ME/CFS participants at baseline. A comparison of the White Blood Cell (WBC) Count, i.e., a measurement of the number of white blood cells in the blood, in the two populations is reported. Low values can suggest immune deficiencies. High values can suggest infection or inflammation.

Outcome measures

Outcome measures
Measure
Healthy Volunteers
n=21 Participants
Participants found to be healthy after a medical and psychiatric evaluation who completed the Cardiopulmonary Exercise Test (CPET).
ME/CFS Participants
n=17 Participants
ME/CFS Participants who complete the Cardiopulmonary Exercise Test (CPET)
Characterization of the Immune System and Inflammation - WBC
5.907 number of WBCs(K)/uL
Standard Deviation 1.536
6.143 number of WBCs(K)/uL
Standard Deviation 1.243

OTHER_PRE_SPECIFIED outcome

Timeframe: Baseline

Blood and CSF were collected from healthy and ME/CFS participants at baseline. A comparison of the results of the Erythrocyte Sedimentation Rate (ESR), i.e., a measure of how quickly red blood cells settle at the bottom of a test tube, in the two populations is reported. A faster than normal rate of settling suggests inflammation.

Outcome measures

Outcome measures
Measure
Healthy Volunteers
n=21 Participants
Participants found to be healthy after a medical and psychiatric evaluation who completed the Cardiopulmonary Exercise Test (CPET).
ME/CFS Participants
n=17 Participants
ME/CFS Participants who complete the Cardiopulmonary Exercise Test (CPET)
Characterization of the Immune System and Inflammation - ESR
7.43 mm/hr
Standard Deviation 6.13
10.1 mm/hr
Standard Deviation 11.9

OTHER_PRE_SPECIFIED outcome

Timeframe: Baseline

Blood and CSF were collected from healthy and ME/CFS participants at baseline. A comparison of the results of C-Reactive Protein (CRP), i.e., a measurement of a protein that is made by the liver, in the two populations is reported. A higher level than normal suggests inflammation.

Outcome measures

Outcome measures
Measure
Healthy Volunteers
n=21 Participants
Participants found to be healthy after a medical and psychiatric evaluation who completed the Cardiopulmonary Exercise Test (CPET).
ME/CFS Participants
n=17 Participants
ME/CFS Participants who complete the Cardiopulmonary Exercise Test (CPET)
Characterization of the Immune System and Inflammation - CRP
3.29 mg/L
Standard Deviation 6.85
1.4 mg/L
Standard Deviation 2.22

OTHER_PRE_SPECIFIED outcome

Timeframe: Baseline

Blood and CSF were collected from healthy and ME/CFS participants at baseline. A comparison of the White Blood cell Count in Cerebrospinal Fluid (WBC in CFS), i.e., a measurement of the number of white blood cells in the cerebrospinal fluid, in the two populations is reported. Higher levels than normal suggest inflammation or infection in the central nervous system.

Outcome measures

Outcome measures
Measure
Healthy Volunteers
n=21 Participants
Participants found to be healthy after a medical and psychiatric evaluation who completed the Cardiopulmonary Exercise Test (CPET).
ME/CFS Participants
n=17 Participants
ME/CFS Participants who complete the Cardiopulmonary Exercise Test (CPET)
Characterization of the Immune System and Inflammation - WBC in CFS
1.0 number WBCs/uL
Standard Deviation 1.124
1.313 number WBCs/uL
Standard Deviation 1.662

OTHER_PRE_SPECIFIED outcome

Timeframe: Baseline

Population: Technical issues with assay prevented complete dataset.

The oxygen consumption rate of peripheral blood mononuclear cells per unit of time when the cells are in their normal, unprovoked state of function measured in Basal (units) was measured in Healthy and ME/CFS participants at baseline. This is a standard measure of mitochondrial respiration that is responsible for providing energy to cells.

Outcome measures

Outcome measures
Measure
Healthy Volunteers
n=13 Participants
Participants found to be healthy after a medical and psychiatric evaluation who completed the Cardiopulmonary Exercise Test (CPET).
ME/CFS Participants
n=14 Participants
ME/CFS Participants who complete the Cardiopulmonary Exercise Test (CPET)
Mitochondrial Extracellular Flux Assay
46.7 Pmol/min
Interval 26.2 to 58.0
52.1 Pmol/min
Interval 41.0 to 84.9

OTHER_PRE_SPECIFIED outcome

Timeframe: Baseline

Population: Data from participants on cardiac medications were excluded.

Variability of the time between heartbeats can be used to measure alterations in autonomic function. The Standard Deviation of the Normal-to-Normal Intervals (SDNNi) is a measure of the amount of beat to beat variability between each normal heartbeat collected over a 24 hour period. These results compare the SDNNi in healthy and ME/CFS participants at baseline.

Outcome measures

Outcome measures
Measure
Healthy Volunteers
n=19 Participants
Participants found to be healthy after a medical and psychiatric evaluation who completed the Cardiopulmonary Exercise Test (CPET).
ME/CFS Participants
n=13 Participants
ME/CFS Participants who complete the Cardiopulmonary Exercise Test (CPET)
Effect of Maximal Exertion on Autonomic Function as Measured by SDNNi in Healthy and ME/CFS Participants.
67.8 ms
Interval 58.9 to 77.1
56.3 ms
Interval 46.1 to 64.4

OTHER_PRE_SPECIFIED outcome

Timeframe: Baseline

Population: Two participants were unable to complete due to technical difficulties with procedure.

Persons with autonomic dysfunction will often have symptoms provoked by having an up-to-40 minutes long tilt table test. The percentage of participants in each group having severe enough symptoms which required the test to be stopped in Healthy and ME/CFS participants at baseline.

Outcome measures

Outcome measures
Measure
Healthy Volunteers
n=19 Participants
Participants found to be healthy after a medical and psychiatric evaluation who completed the Cardiopulmonary Exercise Test (CPET).
ME/CFS Participants
n=17 Participants
ME/CFS Participants who complete the Cardiopulmonary Exercise Test (CPET)
Clinical Response Effect of Tilt Table Testing
36.8 percentage of participants
58.8 percentage of participants

OTHER_PRE_SPECIFIED outcome

Timeframe: Baseline

Population: Single batch analyzed on subset of participants

Stool samples were taken from Healthy and ME/CFS participants at baseline. The number of specific types of bacteria, using the Least Known Taxon (LTK) units, were measured with the Shotgun Metagenomic method.

Outcome measures

Outcome measures
Measure
Healthy Volunteers
n=17 Participants
Participants found to be healthy after a medical and psychiatric evaluation who completed the Cardiopulmonary Exercise Test (CPET).
ME/CFS Participants
n=15 Participants
ME/CFS Participants who complete the Cardiopulmonary Exercise Test (CPET)
Characterization of the Pattern of Microbiome in Stool
477 LTK
Standard Deviation 32.9
427 LTK
Standard Deviation 44.1

OTHER_PRE_SPECIFIED outcome

Timeframe: Baseline

Population: Not all participants were able to complete test.

The TOVA is a measure of cognitive function that assesses attention and inhibitory control. The test is used to measure a number of variables involving the test taker's response to either a visual or auditory stimulus measured during a "simple, yet boring, computer game". These measurements are then compared to the measurements of a group of people without attention disorders who took the T.O.V.A. The range of values for the score, after normalization to the population, is -10 to +10, with a lower score representing a worse attention score. The test was administered to Healthy and ME/CFS participants at baseline.

Outcome measures

Outcome measures
Measure
Healthy Volunteers
n=18 Participants
Participants found to be healthy after a medical and psychiatric evaluation who completed the Cardiopulmonary Exercise Test (CPET).
ME/CFS Participants
n=15 Participants
ME/CFS Participants who complete the Cardiopulmonary Exercise Test (CPET)
Test of Variables of Attention (TOVA)
1.1 score on a scale
Standard Deviation 3.6
0.9 score on a scale
Standard Deviation 4.7

OTHER_PRE_SPECIFIED outcome

Timeframe: Baseline

Population: Not all participants were able to complete test.

The PASAT is a measure of cognitive function that assesses auditory information processing speed and flexibility, as well as calculation ability. Single digits are presented every 3 seconds and the patient must add each new digit to the one immediately prior to it. The test score is the total number of correct trials out of a possible 60. The test was administered to Healthy and ME/CFS participants at baseline.

Outcome measures

Outcome measures
Measure
Healthy Volunteers
n=17 Participants
Participants found to be healthy after a medical and psychiatric evaluation who completed the Cardiopulmonary Exercise Test (CPET).
ME/CFS Participants
n=15 Participants
ME/CFS Participants who complete the Cardiopulmonary Exercise Test (CPET)
Paced Auditory Serial Addition Test (PASAT)
52.4 score on a scale
Standard Deviation 12.1
52 score on a scale
Standard Deviation 11

Adverse Events

Healthy Volunteer Participants

Serious events: 0 serious events
Other events: 14 other events
Deaths: 0 deaths

ME/CFS Participants

Serious events: 0 serious events
Other events: 23 other events
Deaths: 0 deaths

Serious adverse events

Adverse event data not reported

Other adverse events

Other adverse events
Measure
Healthy Volunteer Participants
n=25 participants at risk
Participants found to be healthy after a medical and psychiatric evaluation.
ME/CFS Participants
n=27 participants at risk
Participants with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Gastrointestinal disorders
Abdominal pain
4.0%
1/25 • Number of events 1 • Up to 2 weeks
3.7%
1/27 • Number of events 1 • Up to 2 weeks
Immune system disorders
Allergic reaction
0.00%
0/25 • Up to 2 weeks
3.7%
1/27 • Number of events 1 • Up to 2 weeks
Musculoskeletal and connective tissue disorders
Arthalgia
4.0%
1/25 • Number of events 1 • Up to 2 weeks
3.7%
1/27 • Number of events 1 • Up to 2 weeks
Nervous system disorders
Aphonia
0.00%
0/25 • Up to 2 weeks
3.7%
1/27 • Number of events 1 • Up to 2 weeks
Musculoskeletal and connective tissue disorders
Back pain
28.0%
7/25 • Number of events 9 • Up to 2 weeks
44.4%
12/27 • Number of events 13 • Up to 2 weeks
Nervous system disorders
Cerebrospinal fluid leakage
24.0%
6/25 • Number of events 6 • Up to 2 weeks
11.1%
3/27 • Number of events 3 • Up to 2 weeks
Injury, poisoning and procedural complications
Bruising
0.00%
0/25 • Up to 2 weeks
3.7%
1/27 • Number of events 1 • Up to 2 weeks
Nervous system disorders
Dizziness
16.0%
4/25 • Number of events 4 • Up to 2 weeks
14.8%
4/27 • Number of events 4 • Up to 2 weeks
Respiratory, thoracic and mediastinal disorders
Dyspnea
4.0%
1/25 • Number of events 1 • Up to 2 weeks
3.7%
1/27 • Number of events 1 • Up to 2 weeks
General disorders
Fatigue
4.0%
1/25 • Number of events 1 • Up to 2 weeks
22.2%
6/27 • Number of events 12 • Up to 2 weeks
Nervous system disorders
Headache
12.0%
3/25 • Number of events 3 • Up to 2 weeks
40.7%
11/27 • Number of events 15 • Up to 2 weeks
Musculoskeletal and connective tissue disorders
Generalized muscle weakness
0.00%
0/25 • Up to 2 weeks
3.7%
1/27 • Number of events 1 • Up to 2 weeks
Vascular disorders
Hypotension
12.0%
3/25 • Number of events 3 • Up to 2 weeks
7.4%
2/27 • Number of events 2 • Up to 2 weeks
Psychiatric disorders
Insomnia
0.00%
0/25 • Up to 2 weeks
3.7%
1/27 • Number of events 1 • Up to 2 weeks
Gastrointestinal disorders
Lip pain
0.00%
0/25 • Up to 2 weeks
3.7%
1/27 • Number of events 1 • Up to 2 weeks
General disorders
Localized edema
0.00%
0/25 • Up to 2 weeks
3.7%
1/27 • Number of events 1 • Up to 2 weeks
Nervous system disorders
Movements Involuntary
0.00%
0/25 • Up to 2 weeks
3.7%
1/27 • Number of events 1 • Up to 2 weeks
Musculoskeletal and connective tissue disorders
Neck pain
0.00%
0/25 • Up to 2 weeks
3.7%
1/27 • Number of events 1 • Up to 2 weeks
Musculoskeletal and connective tissue disorders
Extremity pain
8.0%
2/25 • Number of events 2 • Up to 2 weeks
11.1%
3/27 • Number of events 3 • Up to 2 weeks
Nervous system disorders
Paresthesia
8.0%
2/25 • Number of events 3 • Up to 2 weeks
14.8%
4/27 • Number of events 4 • Up to 2 weeks
Nervous system disorders
Pre-syncope
0.00%
0/25 • Up to 2 weeks
3.7%
1/27 • Number of events 1 • Up to 2 weeks
Gastrointestinal disorders
Vomiting
0.00%
0/25 • Up to 2 weeks
3.7%
1/27 • Number of events 1 • Up to 2 weeks
Gastrointestinal disorders
Nausea
4.0%
1/25 • Number of events 1 • Up to 2 weeks
0.00%
0/27 • Up to 2 weeks
Musculoskeletal and connective tissue disorders
Myaligia
4.0%
1/25 • Number of events 1 • Up to 2 weeks
0.00%
0/27 • Up to 2 weeks

Additional Information

Dr. Brian Walitt

National Institutes of Health

Phone: 202-549-7669

Results disclosure agreements

  • Principal investigator is a sponsor employee
  • Publication restrictions are in place