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Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation® Canada
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POWERED BY OPEN COLLABORATIVE RESEARCH

The End ME/CFS & Long COVID Project encompasses OMF funded and facilitated research conducted within six ME/CFS Collaborative Research Centers (CRCs). OMFCA’s guiding strategy focuses on open, collaborative research so that precise diagnostic tools and life-changing treatments can be available to people with related chronic complex diseases as soon as possible.

Funding an internationally-based research network instead of single researchers ensures the stability and collaboration essential for an outcomes-focused, transparent, and multi-pronged approach to finding answers

OMF COLLABORATIVE NETWORK

The six CRCs are working collaboratively to build a repository of data about ME/CFS and Long COVID.

This data is essential to develop diagnostic technologies, understand the molecular basis of the diseases, and uncover effective diagnostic tools and treatments.

ME / CFS Collaborative
Research Center

at Stanford University
See the research

The Ronald G. Tompkins Harvard
ME / CFS Collaboration

at Harvard Affiliated Hospitals
See the research

ME / CFS Collaborative
Research Center

at Uppsala, Sweden
See the research

ME / CFS Collaborative
Research Center

at the CHU Sainte-Justine/
Université de Montréal​​
See the research

Melbourne
ME / CFS Collaboration

at Melbourne, Australia
See the research

Computational Research Center for Complex Diseases

Harvard Medical School and Stanford Genome Technology Center
See the research
Major OMF Supported Research Initiatives

With oversight from OMF’s Boards of Directors and Scientific Advisory Board, the following research projects further OMFCA’s Strategic Goals to improve the diagnosis and treatment of ME/CFS and Long COVID.

Current

Post COVID-19 to ME/CFS Research Plan

The current COVID-19 pandemic offers an unprecedented opportunity to understand how a viral infection may convert to ME/CFS in some patients.

The six ME/CFS Collaborative Centers have begun a unique,  extensive, in-depth longitudinal molecular study following COVID-19 patients. Their shared goal is to determine the pathways involved in maintaining long-term symptoms in some patients,  possibly converting to ME/CFS. They seek to learn about these pathways so as to develop biomarkers, novel drug targets,  new treatment, and prevention strategies.

OMF–Funded Research Publications
  1. Huang, K., et al. (2024). Discriminating Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and comorbid conditions using metabolomics in UK Biobank. Commun Med, 4(248). doi:10.1038/s43856-024-00669-7 (Melbourne ME/CFS Collaboration)
    • Read a summary of the paper here.
  2. Abujrais, S., Vallianatou, T., and Bergquist, J. (2024). Untargeted Metabolomics and Quantitative Analysis of Tryptophan Metabolites in Myalgic Encephalomyelitis Patients and Healthy Volunteers: A Comparative Study Using High-Resolution Mass Spectrometry. ACS Chem. Neurosci. doi:10.1021/acschemneuro.4c00444 (Collaborative Center at Uppsala)
    • Read a summary of the paper here.
  3. Jahanbani, F., et al. (2024). Longitudinal cytokine and multi-modal health data of an extremely severe ME/CFS patient with HSD reveals insights into immunopathology, and disease severity. Front. Immunol, 15. doi:10.3389/fimmu.2024.1369295 (Collaborative Center at Stanford)
    • Read a summary of the paper here.
  4. Annesley, D., et al. (2024). Unravelling shared mechanisms: insights from recent ME/CFS research to illuminate long COVID pathologies. Trends Mol Med., 30(5), 443-458. doi:10.1016/j.molmed.2024.02.003 (Melbourne ME/CFS Collaboration)
    • Read a summary of the paper here.
  5. Abujrais, S., Ubhayasekera, S.J.K.A., and Bergquist, J. (2024). Analysis of tryptophan metabolites and related compounds in human and murine tissue: development and validation of a quantitative and semi-quantitative method using high resolution mass spectrometry. Anal. Methods, 16, 1074-1082. doi:10.1039/d3ay01959d (Collaborative Center at Uppsala)
    • Read a summary of the paper here.
  6. Armstrong, C.W., et al. (2023). In vitro B cell experiments explore the role of CD24, CD38, and energy metabolism in ME/CFS. Front. Immunol, 14. doi:10.3389/fimmu.2023.1178882 (Melbourne ME/CFS Collaboration)
    • Read a summary of the paper here.
  7. Jensen, M.A., et al. (2023). Catalytic Antibodies May Contribute to Demyelination in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. ACS Biochemistry, 63(1), 9-18. doi:10.1021/acs.biochem.3c00433 (Collaborative Center at Stanford)
    • Read a summary of the paper here.
  8. Schutzer, S.E., et al. (2023) Myalgic encephalomyelitis/chronic fatigue syndrome and fibromyalgia are indistinguishable by their cerebrospinal fluid proteomes. Annals of Medicine, 55(1), 2208372. doi:10.1080/07853890.2023.2208372 (Collaborative Center at Uppsala)
  9. Slavin, M.D., et al. (2023). Myalgic Encephalomyelitis-Chronic Fatigue Syndrome Common Data Element item content analysis. PLoS ONE, 18(9), e0291364. doi:10.1371/journal.pone.0291364 (The Ronald G. Tompkins Harvard ME/CFS Collaboration)
  10. Nääs, A., et al. (2023). Temporal pathway analysis of cerebrospinal fluid proteome in herpes simplex encephalitis. Infectious Diseases, 55(10), 694-705. doi:10.1080/23744235.2023.2230281 (Collaborative Center at Uppsala)
  11. Joseph, P., et al. (2023). Exercise Pathophysiology in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Post-Acute Sequelae of SARS-CoV-2: More in Common Than Not? CHEST, 164(3), 717-726. doi:10.1016/j.chest.2023.03.049 (The Ronald G. Tompkins Harvard ME/CFS Collaboration)
  12. Nepotchatykh, E., et al. (2023). Circulating micoRNA expression signatures accurately discriminate myalgic encephalomyelitis from fibromyalgia and comorbid conditions. Scientific Reports, 13, 1896. doi:10.1038/s41598-023-28955-9 (Collaborative Center at Montreal)
  13. Huang, K., et al. (2022). Systematic Review of NMR-Based Metabolomics Practices in Human Disease Research. Metabolites, 12(10), 963. doi:10.3390/metabo12100963 (Melbourne ME/CFS Collaboration)
  14. Horwitz, E.B., et al. (2022). When a 17-Year-Old Girl Is Diagnosed with Myalgic Encephalomyelitis: A Case Study from the Swedish Health Care System—A Parent Perspective. Case Reports in Clinical Medicine, 11(8), 280-296. doi:10.4236/crcm.2022.118041 (Collaborative Center at Uppsala)
  15. Kisiel, M.A., et al. (2022). Predictors of post-COVID-19 and the impact of persistent symptoms in nonhospitalized patients 12 months after COVID-19, with a focus on work ability. Upsala Journal of Medical Sciences, 127. doi:10.48101/ujms.v127.8794 (Collaborative Center at Uppsala)
  16. Jahanbani, F., et al. (2022). Phenotypic Characteristics of Peripheral Immune Cells of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome via Transmission Electron Microscopy: A Pilot Study. PLoS ONE, 17(8), e0272703. doi:10.1371/journal.pone.0272703 (Collaborative Center at Stanford)
  17. Joseph, P., et al. (2022). Neurovascular Dysregulation and Acute Exercise Intolerance in ME/CFS: A Randomized, Placebo-Controlled Trial of Pyridostigmine. CHEST, 162(5), 1116-1126. doi:10.1016/j.chest.2022.04.146 (The Ronald G. Tompkins Harvard ME/CFS Collaboration)
  18. Thomas, N., et al. (2022). The underlying sex differences in neuroendocrine adaptations relevant to Myalgic Encephalomyelitis Chronic Fatigue Syndrome. Frontiers in Neuroendocrinology, 66, 100995. doi:10.1016/j.yfrne.2022.100995 (Melbourne ME/CFS Collaboration)
  19. Stanculescu, D., and Bergquist, J. (2022). Perspective: Drawing on Findings From Critical Illness to Explain Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. Front Med (Lausanne), 9. doi:10.3389/fmed.2022.818728 (Collaborative Center at Uppsala)
  20. Stanculescu, D., et al. (2021). Lessons From Heat Stroke for Understanding Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Frontiers in Neurology, 12. doi:10.3389/fneur.2021.789784 (Collaborative Center at Uppsala)
  21. Chang, C-J., et al. (2021). A Comprehensive Examination of Severely Ill ME/CFS Patients. Healthcare, 9(10), 1290. doi:10.3390/healthcare9101290 (Collaborative Center at Stanford)
  22. Stanculescu, D., Larsson, L., and Bergquist, J. (2021). Theory: Treatments for Prolonged ICU Patients May Provide New Therapeutic Avenues for ME/CFS (ME/CFS). Front Med (Lausanne), 7(8), 672370. doi:10.3389/fmed.2021.672370 (Collaborative Center at Uppsala)
    • Read a summary of the paper here.
  23. Al-Karagholi, M.A-M., et al. (2021). Phase 1 study to access safety, tolerability, pharmacokinetics09, and pharmacodynamics of kynurenine in healthy volunteers. Pharmacol Res Perspect, 9(2), e00741. doi:10.1002/prp2.741 (Collaborative Center at Uppsala)
  24. Joseph, P., et al. (2021). Insights from Invasive Cardiopulmonary Exercise Testing of Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. CHEST, 160(2), 642-651. doi:10.1016/j.chest.2021.01.082 (The Ronald G. Tompkins Harvard ME/CFS Collaboration)
    • Read a summary of the paper here.
  25. Stanculescu, D., Larsson, L., and Bergquist, J. (2021). Hypothesis: Mechanisms That Prevent Recovery in Prolonged ICU Patients Also Underlie Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Front Med, 8. doi:10.3389/fmed.2021.628029 (Collaborative Center at Uppsala)
    • Read a summary of the paper here.
  26. Sachdeva, S., Davis, R.W., and Saha, A.K. (2021). Microfluidic Point-of-Care Testing: Commercial Landscape and Future Directions. Front. Bioeng. Biotechnol., 8. doi:10.3389/fbioe.2020.602659 (Collaborative Center at Stanford).
  27. Nepotchatykh, E., et al. (2020). Profile of circulating microRNAs in myalgic encephalomyelitis and their relation to symptom severity, and disease pathophysiology. Scientific Reports, 10, 19620. doi:10.1038/s41598-020-76438-y (Collaborative Center at Montreal)
    • Read a summary of the paper here
  28. Bynke, A., et al. (2020). Autoantibodies to beta-adrenergic and muscarinic cholinergic receptors in Myalgic Encephalomyelitis (ME) patients – A validation study in plasma and cerebrospinal fluid from two Swedish cohorts. Brain, Behavior, & Immunity – Health, 7, 100107. doi:10.1016/j.bbih.2020.100107 (Collaborative Center at Uppsala)
  29. Virhammar, J., et al. (2020). Acute necrotizing encephalopathy with SARS-CoV-2 RNA confirmed in cerebrospinal fluid. Neurology, 95(10), 445-449. doi:10.1212/WNL.0000000000010250 (Collaborative Center at Uppsala)
  30. Kashi, A.A., Davis, R.W., and Phair, R.D. (2019). The IDO Metabolic Trap Hypothesis for the Etiology of ME/CFS. Diagnostics, 9(3), 82. doi:10.3390/diagnostics9030082 (Collaborative Center at Stanford)
    • Read a summary of the paper here..
  31. Esfandyarpour, R., et al. (2019). A nanoelectronics-blood-based diagnostic biomarker for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). PNAS, 116(21), 10250-10257. doi:10.1073/pnas.1901274116 (Collaborative Center at Stanford)
    • Read a summary of the paper here.
  32. Saha, A.K., et al. (2019). Red blood cell deformability is diminished in patients with Chronic Fatigue Syndrome. Clinical Hemorheology and Microcirculation, 71(1), 113-116. doi:10.3233/CH-180469 (Collaborative Center at Stanford)
    • Read a summary of the paper here..
  33. Naviaux, R.K., et al. (2016). Metabolic features of chronic fatigue syndrome. PNAS, 113(37), E5472-E5480. doi:10.1073/pnas.1607571113 (Collaborative Center at Stanford)
    • Read a summary of the paper here.
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Data Subject Access Request (DSAR) Form 

Microvesicles and viral sequencing
Microvesicles are a type of extracellular vesicle that is released from the cell membrane. Vesicles are small, fluid-filled sacs or vacuoles within the body. Sequencing is a technique used to determine the exact sequence of bases (A, C, G, and T) in a DNA (or viral) molecule.
NMR Metabolomics
NMR (Nuclear Magnetic Resonance) is an instrument/tool used to perform metabolic studies, metabolic profiling, and metabolomics in biofluids and tissues for more than 40 years using magnetic fields. There is a very close connection between metabolic measurements and NMR. This connection has flourished because of NMR’s many unique strengths for characterizing complex mixtures’ chemical composition.
Proteomics
The large-scale study of proteins, which are large, complex molecules that are required for structure, function, and regulation of the human body's tissues and organs.
Autoantibodies
Antibodies that react with self-molecules and that occur in healthy individuals and are referred to as natural antibodies or autoantibodies.
Extracellular DNA for viral reactivation and Mitochondrial DNA
exDNA (extracellular DNA), exDNA is often secreted actively and is used to perform several tasks, thereby offering an attractive target or tool for biotechnological, medical, environmental, and general microbiological applications. Viruses are intracellular parasites that rely to a significant extent on the host cell for replication. Viral reactivation occurs when an active replication of the viral genome results in a lytic (degradation of the cell) infection characterized by the release of new progeny (descendant) virus particles.
Immune cell profiling
The immune system has many important regulatory roles in disease development and progression. Given the emergence of effective immune therapies, reliable predictors of response are needed. Immune cell profiling determines response by evaluating immune cell populations from treated and untreated samples. For our purposes, we will evaluate the white blood cell response to the viral infection using a process called “Cytof.”
Leukocyte Genomics
A leukocyte is a colorless cell circulating in the blood and body fluids and is involved in counteracting foreign substances and disease. A genome is all genetic material of an organism. Genomics is a biology field focusing on the structure, function, evolution, mapping, and editing of genomes. Therefore, leukocyte genomics is the study of all genetic material of leukocytes.
Metabolomics
Metabolomics is a way to study metabolism – that is, through measuring amounts of the metabolites (small molecules) produced by our bodies as we convert food into energy and other molecules that our cells need to survive. Metabolomics technology is ‘large-scale,’ meaning that several thousand metabolites can be measured from a single sample of e.g., blood or urine.
Micro RNA
Cells use Micro RNA to control whether a particular gene is making too much, too little or the normal amount of its protein at a particular time.