Ongoing ME/CFS studies

Multidimensional studies


Myalgic Encephalomyelitis/Chronic Fatigue Syndrome at the National Institutes of Health
Lead researcher: Avindra Nath
National Institute of Neurological Disorders and Stroke (NINDS)
Study Start Date: January 21, 2016
Estimated Study Completion Date: September 15, 2020
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Dr Avindra Nath presenting the study (video)

ME/CFS Severely ill Big Data Study
Open Medicine Foundation
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NIH ME/CFS centers: (S4ME thread)

*Cornell ME/CFS Collaborative Research Center
Lead researcher: Maureen Hanson, Ph.D.
Cornell University, Ithaca, New York
Center registration
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Main research projects:
- Brain imaging study, led by Dikoma Shungu (See the neurology studies list below for more information)
- Extracellular vesicles, led by Hanson (See the immunology studies list below for more information)
- RNAs in white blood cells, led by Andrew Grimson (See the genetic studies list below for more information)

* Center for Solutions for ME/CFS
Lead researcher: W. Ian Lipkin, M.D.
Columbia University, New York City
Center registration
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*Topological Mapping of Immune, Metabolomic and Clinical Phenotypes to Reveal ME/CFS Disease Mechanisms
Lead researcher: Derya Unutmaz, M.D.
The Jackson Laboratory, Farmington, Connecticut
Center registration
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*Data Management and Coordinating Center (DMCC) for the ME/CFS Collaborative Research Centers
Lead researcher: Rick L. Williams, Ph.D.
Research Triangle Institute, Research Triangle, North Carolina
Center registration


ME/CFS Collaborative Research Center at Stanford
Lead researcher: Ronald W. Davis
Research projects:
T cells and the molecular immunology of ME/CFS
Extended big data study in families
Developing blood-based diagnostic and drug screening technology
More information
S4ME thread

Immunology

Immune System Dysfunction
Lead researchers: Professor Stephen Todryk and Professor Julia Newton
ME Association Ramsay Research Fund / Action for ME
Start: 2014
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Cyclophosphamide in Myalgic Encephalopathy/ Chronic Fatigue Syndrome (ME/CFS) (CycloME) Treatment study
Lead researchers: Mella Olav, Øystein Fluge
Haukeland University Hospital
Start: 2015
Estimated Study Completion Date: January 2017
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The role of autoantibodies in ME/CFS
Lead researchers: Dr Madlen Löbel & Prof. Carmen Scheibenbogen
Institute of Medical Immunology, Charité University Medicine Berlin, Berlin, Germany
MERUK
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An immunosignature assay for rituximab therapy?
Lead researcher: Prof. David Patrick
School of Population and Public Health, University of British Columbia, Vancouver, British Columbia, USA
MERUK
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Lymphocyte phenotype and cytokine production in ME/CFS patients and patients treated with chemotherapy for breast cancer
Lead researchers: Dr Clive Carter, Dr Philip Wood and colleagues
Leeds NHS Teaching Hospital NHS Trust, St James’s University Hospital, Leeds
MERUK
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Ampligen in Chronic Fatigue Syndrome Treatment study
Hemispherx
Study Start Date: March 1997
Estimated Study Completion Date: February 2019
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S4ME thread

Extracellular vesicles
Lead researcher: Maureen Hanson
Cornell Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Collaborative Research Center
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Combatting oxidative stress
Lead researchers: Dr Faisel Khan, Prof JD Hayes, Prof J Belch, et al.
Vascular & Inflammatory Diseases Research Unit, Division of Cardiovascular & Diabetes Medicine and Division of Cancer Research, Ninewells Hospital & Medical School, Dundee, UK
MERUK
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Immunoadsorption in patients with autoantibodies to ß adrenergic receptors Treatment study
Lead researcher: Carmen Scheibenbogen
Charité, Berlin, Germany
Fresenius Medical Care
More information (German)

HyQvia in patients with immunoglobulin deficiency, frequent infections and CFS Treatment study
Charité, Berlin, Germany
Baxalta
More information (German)
Information on HyQvia

Chronic fatigue syndrome: Leptin, interleukin 6 and clinical symptoms
Lead researcher: Michael Musker
South Australian Health And Medical Research Institute (SAHMRI), Australia
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Immuno-senescence and cell-cycle analysis in the pathophysiology of ME/CFS
Lead researchers: Dr. Sheila Stewart, Dr. Masashi Narita
Washington University (USA), Cambridge University (UK)
SMCI
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Biomarkers for initiation (infection) and metabolic derangement in ME/CFS
Lead researchers: Drs. Blomberg, Bergquist, Gottfries, and Zachrisson
Gottfries clinic, Mölndal, Uppsala University Hospital (Sweden)
SMCI, Ramsay Award Program (2017)
Start: 2018
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Immunometabolism of T cells and monocytes in ME/CFS
Lead researchers: Drs. Carmen Scheibenbogen and Franziska Sotzny
Charité – Universitätsmedizin Berlin (Germany)
SMCI, Ramsay Award Program (2017)
Start: 2018
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Metabolic Analysis of B Cell Maturation
Lead researchers: Chris Armstrong, Fane Mensah and Professor Jo Cambridge
Melbourne Bioanalytics (Australia), University College London (UK)
SMCI, Ramsay Award Program (2016)
More information
SMCI presentation

Metabolic Assessment of Natural Killer Cells
Lead researchers: Drs. Isabel Barao-Silvestre, Ruben Dagda, and Victor Darley-Usmar
University of Nevada Reno, University of Alabama, Birmingham (USA)
SMCI, Ramsay Award Program (2016)
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Identifying Autoimmune signatures in ME/CFS
Lead researchers: Dr. Carmen Scheibenbogen and Madlen Lobel
Charité University Medicine Berlin, Charité Universitatsmedizin Berlin (Germany)
SMCI, Ramsay Award Program (2016)
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The potential role of HHV-6 in ME/CFS
Lead researcher: Bhupesh Prusty
Julius Maximilian University of Wurzburg (Germany)
SMCI, Ramsay Award Program (2016)
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Investigation of human endogenous retrovirus expression in individuals with myalgic encephalomyelitis
Lead researcher: Dr Camila Malto Romano
USP - Universidade de São Paulo (Brazil)
Using UK ME CFS Biobank
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Droplet digital PCR for evaluation of associations between human Herpes virus infection and Myalgic encephalomyelitis/chronic fatigue syndrome(ME/CFS)
Lead researchers: Eleanor Riley, Jackie Cliff
London Sch/Hygiene & Tropical Medicine
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A longitudinal immunological and virological study for ME CFS biomarker discovery
Lead researcher: Luis Nacul
London Sch/Hygiene & Tropical Medicine
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Defining autoimmune aspects of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
PhD research: Katharine Seton
Invest in ME
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Energy metabolism

Examining Mitochondria in ME/CFS
Lead researcher: Dr Karl Morten
ME Association Ramsay Research Fund
Using UK Biobank samples
Start: 2017
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S4ME thread

Comparison of results from a commercial and NHS blood test to assess mitochondrial function
Lead researcher: Dr Sarah Jayne Boulton
ME Association Ramsay Research Fund
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Abnormalities in Mitochondrial Function in Skeletal Muscle
Lead researcher: Professor Anne McArdle
ME Association Ramsay Research Fund/Medical Research Council
Preliminary results (2015)
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Bioenergetics capacity, ATP production and potential drug targets using advanced technologies
Lead researcher: Dr. Ralph Garippa
Memorial Sloan Kettering Cancer Center (MSKCC), New York City (USA)
SMCI
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Projects

Longitudinal metabolic and genomic study
Lead researcher: Chris Armstrong
Melbourne Bioanalytics, Australia
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Mitochondrial Respiratory Function and Cellular Metabolism in Lymphoblasts
Lead researcher: Chris Armstrong, Daniel Missailidis and Paul Fisher
Melbourne Bioanalytics, LaTrobe University, Australia
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Muscles studies

Investigating abnormalities in AMPK activation
Lead researcher: Dr Audrey Brown
Institute of Cellular Medicine, Newcastle University, Newcastle, UK
MERUK
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Muscle metabolites in patients before and after exercise
Lead researchers: Pr. Kevin Conley, Pr. David Maughan
University of Washington
SMCI, Cathleen J. Gleeson PhD Fund
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Neurology studies

Neurological biomarkers in paediatric ME/CFS
Lead researcher: Dr Sarah Knight and colleagues
Murdoch Children’s Research Institute, The Royal Children’s Hospital, University of Melbourne, Melbourne, Australia
MERUK
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Markers of neuroinflammation and oxidative stress
Lead researcher: Dikoma Shungu
Cornell Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Collaborative Research Center
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Interrogating the brain: experiments with laser-evoked potentials and cerebral blood flow
Lead researchers: Prof. J. Nijs, Prof P. Cras, Prof F. visser, M. de Kooning and colleagues
Faculty of Physical Education and Physiotherapy, Vrije Universiteit Brussel, Brussels, Belgium
MERUK
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Development of surrogate end-point biomarkers for chronic fatigue and myalgic encephalmyelitis/chronic fatigue syndrome (ME/CFS)
Lead researcher: Watanabe
Pet Scan study
Japan
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S4ME thread

Exploring Brain Inflammation
Lead researcher: Dr. Jarred Younger
University of Alabama, Birmingham (USA)
SMCI, Ramsay Award Program (2016)
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Projects

Glial activation in brainstem
Dr. Michael VanElzakker
Massachusetts General Hospital
More information
S4ME thread


Autonomic system

ME/CFS: Activity Patterns and Autonomic Dysfunction
Lead researcher: Fred Friedberg
Stony Brook University New York, United States
NIH funds
Study Start Date: June 2016
Estimated Study Completion Date: May 2020
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S4ME Thread



If you have questions or want to make a suggestion, please go to the Librairy Discussions thread.

 

Exercise studies

Cardiopulmonary Exercise Testing as a Diagnostic Tool and a Quantitative Measure of Post-exertional Malaise in Myalgic Encephalopathy/Chronic Fatigue Syndrome
Lead researcher: Per Ole Iversen
University of Oslo
Study Start Date: June 2014
Estimated Study Completion Date: December 2018
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Effect of Exercise on Cognitive and Immune System Function
Lead researchers: Dr Amolak Bansal and Dr Megan Arroll
ME Association Ramsay Research Fund
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Host gene expression during post-exertional symptom flare in ME/CFS: a hypothesis generating study
Lead researcher: Dr David Patrick
School of Population and Public Health, University of British Columbia, British Columbia, Canada
MERUK
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Connection between small fiber polyneuropathy and exertional intolerance during the course of cardiopulmonary testing
Lead researcher: Dr. David M. Systrom
Brigham and Women’s Hospital (BWH), Boston (USA)
SMCI
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Cort Johnson's article on the study

Exercise-related Post-exertional Malaise (CFS/ME)
Lead researcher: Fred Friedberg
Stony Brook University (USA)
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S4ME thread

Genetic studies

ME/CFS Genes Study
Nova University
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S4ME thread

Examination of MicroRNA profiles in PBMCs and exosome-enriched vesicles
Lead researcher: Professor Elisa Oltra
Catholic University of Valencia (Spain)
ME Association Ramsay Research Fund
Using UK Biobank samples
Start: 2017 (estimated time to complete: 18 months)
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Metabolomics and Genetics Study
Lead researchers: Robert Naviaux Ron Davis
Open Medicine Fundation
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Two dimensional sequencing and machine learning to maximise genetic marker detection
Lead researcher: Prof Brett Lidbury and colleagues
The John Curtin School of Medical Research, Australian National University, Canberra, Australia
MERUK
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Epigenetics of the BDNF gene and its relevance for pain: an exploratory study
Lead researchers: Prof Jo Nijs & Prof Lode Godderis
Vrije Universiteit Brussel, University Hospital Brussels & University of Leuven
MERUK
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RNAs in white blood cells
Lead researcher: Andrew Grimson
Cornell Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Collaborative Research Center
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Effect of ME/CFS on epigenetic regulation in specific immune cell types
Lead researchers: Drs. Lubov Nathanson, Vladimir Beljanski, Malav Suchin Trivedi, Elisa Oltra
Nova Southeastern University (USA), Universidad Católica de Valencia (Spain)
SMCI, Ramsay Award Program (2017)
Start: 2018
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Microbiome

Fecal microbiota transplant in chronic fatigue syndrome - an RCT Treatment study
Funding: Norway Research Council
University Hospital Northern Norway, Harstad"
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FB trial Page (Norwegian)

Comparing ME/CFS and IBS: gut immune and microbiome changes
Lead researcher: Prof. Yan Yiannakou
Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle, UK
MERUK
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S4ME thread

Gut microbes in health and disease
Lead researcher: Prof. Simon Carding
Carding group
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Research into bioenergetics, metabolomics, and lipidomics
Lead researchers: Dr. Hanson, Dr. Levine
Cornell University, Metabolon
SMCI
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Investigating alterations in the intestinal virome in CFS/ME
Lead researchers: Ms. Fiona Newberry and Drs. Simon Carding & Tom Wileman
Quadram Institute Bioscience, University of East Anglia (USA)
SMCI, Ramsay Award Program (2017)
Start: 2018
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Deciphering antibody reactivities against autoantigens & the microbiome in ME/CFS
Lead researchers: Dr. Segal
Weizmann Institute of Science
SMCI, Ramsay Award Program (2017)
Start: 2018
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Sleep

Sleep Disturbance and Management
Lead researchers: Professor Jason Ellis and Professor Julia Newton
ME Association Ramsay Research Fund
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Cognition

Difficulties with reading: an experimental study
Lead researchers: Dr Claire Hutchinson, Dr Kevin Paterson and Dr John Maltby
Vision and Language Research Group, College of Medicine, Biological Sciences and Psychology, University of Leicester, Leicester, UK
MERUK
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Epidemiology

Severely affected ME/CFS patients – a geographically defined study
Lead researcher: Prof. Newton
Newcastle University
MERUK
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Diagnosis

Evaluating the DePaul Symptom Questionnaire in the ME Research UK cohort: extension study
Lead researcher: Prof. Julia Newton
Institute for Ageing and Health, The Medical School, Newcastle University, Newcastle upon Tyne, UK
MERUK
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If you have questions or want to make a suggestion, please go to the Librairy Discussions thread.