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CompletedNCT03254823Updated Mar 30, 2025

Autoimmunity in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

An observational study in Myalgic Encephalomyelitis and Chronic Fatigue Syndrome, sponsored by University of East Anglia. Completed at 1 site in United Kingdom. Open to participants aged 18 Years to 70 Years, including healthy volunteers. Per ClinicalTrials.gov, last updated 2025-03-30.

Sponsored by University of East Anglia · Observational

Study type
Observational
Model
Other
Time perspective
Other
Enrollment
10
Ages
18 Years to 70 Years
Sex
All
01

Study summary

This study investigates whether there is an immune response directed against gut microbes or food and parts of the body in severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients.

Read the detailed description

Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients will be identified by Epsom and St Helier CFS Service and the Clinical Research Network Eastern. Information sheets will be posted by health professionals to eligible patients. Interested patients are asked to arrange a telephone call with the research team to receive more information about the study. Volunteers still interested after the 72 hour consideration period arrange a home visit to be taken through the consenting process.

Household controls will be recruited through patients participating in the study. Patients invited will be provided with information about household controls. The patient identifies and informs potential household controls of the study using information sheets provided by their health professional. Household controls willing to participate in the study will be taken through an eligibility questionnaire with GCP trained researchers.

Six stool and blood samples will be collected over the three year study period. Stool and blood samples need to be collected within 24 hours of each other, during home visits. 48 hour food diaries will be completed prior to each stool sample collection.

The study is based at the Quadram Institute and the University of East Anglia (UEA). The research is funded by the UEA and Invest in ME Research UK.

02

Conditions studied

  • Myalgic Encephalomyelitis
  • Chronic Fatigue Syndrome
03

Who can participate

Ages eligible
18 Years to 70 Years
Sexes eligible
All
Accepts healthy volunteers
Yes
Sampling method
Non-probability sample

Study population

Severe ME/CFS patient attending Epsom and St Helier CFS Clinic will be identified by the Director of the clinic, Dr Bansal. CRN Eastern will notify general practitioners and occupational therapists of the study. They will then identify severe ME/CFS patients in the East of England.

Household controls will be recruited through severe ME/CFS patients participating in the study.

Inclusion criteria

  • severe ME/CFS patients: men or women aged 18 to 70 years with a clinical diagnosis of severe ME/CFS patients
  • household controls: men or women aged 18 to 70 years, no current or on-going medical conditions. Has to be either related/non-related, living in the same household or in close proximity to, or providing care to the severe ME/CFS patient they are paired with.

Exclusion criteria

Exclusion Criteria:

  • severe ME/CFS patients: the presence of significant anxiety or depression. Have received probiotics or antibiotics up to six weeks before joining the study.
  • Household controls: The presence of long term medical conditions, in particular, affecting the stomach or bowel. Previously diagnosed with autoimmune diseases, for example, systemic lupus erythematous or rheumatoid arthritis. Suffer from significant anxiety or depression. In recipient of immunomodulatory drugs, statins, beta blocker or steroids. Have received probiotics or antibiotics up to six weeks before joining the study.
04

Study design

Observational model
Other
Time perspective
Other
Enrollment
10 participants (actual)
Patient registry
No
Biospecimen retention
Samples with dna

Groups and cohorts

  • Severe ME/CFS patients

    patients with a clinical diagnosis of ME/CFS and are house or bed bound.

  • Household controls

    Healthy human participants who are either related/non-related to, living in the same household or in close proximity to, or providing care to the severe ME/CFS patient they are paired with. They are used as an environmental control.

05

What researchers measure

Primary outcomes

  1. Measurement of antibody levels

    Measurement of serum antibodies that are reactive with intestinal microbes or foods. Antibody levels will reflect the presence of an immune response directed against gut microbes in severe ME/CFS patients.

    Time frame: 3 years

  2. Measurement of cellular immune responses

    Measurement of memory T and memory B cells (from peripheral blood mononuclear cells in the blood) specific to gut microbes (from stool sample). The presence of memory T and B cells will indicate a systemic (whole body) immune response directed against gut microbes in severe ME/CFS patients.

    Time frame: 3 years

  3. Expression of microbial and viral DNA/RNA

    To identify the bacterial, fungal and virus populations in stool samples.

    Time frame: 3 years

Secondary outcomes

  1. Measurement of autoimmunity

    Measurement of serum antibodies and immune cells that are reactive with human cells, such as cells of the central nervous system. The presence of an immune response against human cells and human cell proteins is indicative of the presence of autoimmunity.

    Time frame: 3 years

06

Study locations

1 site
  • Quadram Institute
    Norwich, NR4 7UA, United Kingdom
07

References and documents

Individual participant data

Plan to share: No

No publications or documents are linked to this record.

08

Registry details

Key details

Study ID
NCT03254823
Lead sponsor
University of East Anglia
Collaborators
Quadram Institute Bioscience, Invest in ME Research UK
Responsible party
Sponsor
First posted
Aug 21, 2017
Start date
Aug 9, 2017
Primary completion
Aug 30, 2022
Completion
Aug 30, 2022
Last update
Mar 30, 2025

Study contacts

Simon Carding
principal investigator · Quadram Institute Bioscience

Oversight

Data monitoring committee
No
FDA-regulated drug
No
FDA-regulated device
No
View the source record on ClinicalTrials.gov ↗

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This study is completed, as verified in Oct 2022. You cannot join it, but the record below documents what was studied.

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