Carol Head, CEO and President of Solve ME/CFS Initiative, provides remarks alongside other advocates during a panel discussion on how to move forward with an international ME/CFS research agenda.

First-Ever ME/CFS Collaborative Conference Held in CanadaMay 23, 2018

The First Canadian Collaborative Team Conference for ME/CFS Research was held in Montreal, Quebec from May 3 – May 5 at a facility affiliated with the Université de Montréal, Canada . The conference brought together an international cadre of physicians, clinicians, researchers, individuals with ME/CFS, and other healthcare professionals to discuss progress in ME/CFS research and identify areas of opportunity. Presentations ranged from methods to properly diagnose patients and strategies to improve clinical care to research at the molecular level. Several members of the SMCI family presented, including: Chris Armstrong, PhD (2016 Ramsay Awardee), Lucinda Bateman, MD (SMCI Research Advisory Council member, ad hoc), Jonas Bergquist, MD, PhD (2017 Ramsay Awardee), Maureen Hanson, PhD (SMCI Research Advisory Council Member, SMCI Directed Research Project partner), Rebecca McNeil, PhD (RTI partner for Data Management Center), Peter Rowe, MD (SMCI Research Advisory Council member), Carmen Scheibenbogen, MD (2016 and 2017 Ramsay Awardee) as well as SMCI’s President Carol Head.

Read on for a few conference highlights and click here for the complete agenda and a full list of speakers.


Biochemistry, Metabolomics, and Proteomics: Maureen Hanson, PhD, presented her ongoing research into metabolism in ME/CFS (for a detailed account, read the below “Spotlight on Maureen Hanson”). Cara Thomas, PhD, Newcastle University, gave a comprehensive overview her 2017 study that showed immune cells derived from patient blood samples were less able to produce enough energy to meet the energetic requirements of the cell compared to healthy controls. Dr. Tomas also discussed the complexity of this type of study and the need for strict study design (e.g. can’t mix sample treatment, investigators must use only fresh or only frozen samples). Jonas Bergquist, MD, PhD, Uppsala University, rounded out this session with a discussion of his work using proteomics to measure a range of proteins that could be driving neuroinflammation in ME/CFS.

Spotlight on Maureen Hanson: Ongoing Research Concerning Metabolism in ME/CFS

Maureen Hanson, PhD (Liberty Hyde Bailey Professor Molecular Biology & Genetics at Cornell University, SMCI Research Advisory Council (RAC) member), presented ongoing work by the Cornell Enervating NeuroImmune Disease (ENID) Center to clarify differences between the metabolism of ME/CFS patients compared to healthy controls. Dr. Hanson provided an overview of study results from a collaboration with the Cornell ENID Center, Metabolon, and Dr. Sue Levine (Levine Clinic NYC, SMCI RAC member), launched by SMCI in 2016. Using the Metabolon platform to analyze a large spectrum of plasma metabolites, the group found eight metabolites significantly differed in ME/CFS patients. The study identified biochemical pathways of interest for further research and extended findings from a prior gut microbiome study (Giloteaux et al., 2017) that used the same patient samples. A manuscript for this research is currently under review.

Dr. Hanson’s group also conducted a comparative analysis of data from four metabolomic studies (the Metabolon dataset, Armstrong et al. (2015), Naviaux et al. (2016), Germain et al. (2017)). The differences between metabolite levels in patients and controls were highly consistent between the four studies. Prof. David Ruppert, the statistician who collaborated on the study, was unable to cluster patients into subgroups from the metabolite data. This suggests that even though there might be subgroups in regard to other aspects of the disease, the lack of identifiable subgroups based on metabolite levels indicates there could be something fundamentally different in the metabolism of individuals with ME/CFS. Dr. Hanson pointed out that metabolite levels may be influenced by insufficient delivery of oxygen to tissues, which has been implicated by prior studies demonstrating reduced blood volume, altered exercise physiology, orthostatic intolerance, oxidative stress, and poor blood circulation to the brain in ME/CFS patients.


Genetics, Genomics and Epigenetics: In addition to serving as the conference convener, Dr. Alain Moreau, PhD, University of Montreal, joined Wilfred de Vega, PhD, University of Toronto, Ron Davis, PhD, Stanford Genome Center and Alexis Goth, MD, a clinician in practice with the Nova Scotia Health Authority, in a session on genetics in ME/CFS. The presenters focused on how to harness powerful technologies to further this research and translate research findings into diagnostics and treatment for patients.


Spotlight on Wilfred de Vega: The Epigenetic Landscape of ME/CFS – Deciphering Complex Phenotypes

Wilfred de Vega, PhD, recently completed his doctorate under the supervision of Patrick McGowan, an Assistant Professor at University of Toronto. Since 2014 the research group has rolled out a series of studies that describe epigenetic modifications in ME/CFS. Epigenetics studies changes in the regulation of genes that are influenced by non-genetic or external factors, such as chemical imbalance, nutrition and the environment. He and Dr. McGowan first defined multiple epigenetic differences across the genome, altered via a mechanism called methylation. Notably differences were found in areas related to immune regulation and cellular metabolism. In a follow-up study, they looked at the relationship of epigenetic differences and glucocorticoid (immunosuppressive) sensitivity. Two ME/CFS groups emerged from the data – strong responders (indicative of altered T cell function) and normal responders (those who didn’t differ from healthy controls). In their recently published 2018 study, “Integration of DNA methylation & health scores identifies subtypes in myalgic encephalomyelitis/chronic fatigue syndrome”, the researchers found evidence for extensive methylation differences associated with symptomology and overall quality of life. Their epigenetics work, if validated, may prove beneficial in identifying clinically-meaningful ME/CFS subtypes and drug treatment targets.

The work of Drs. McGowan and de Vega was partially funded by SMCI.


Infection, Immunity & Clinical Research: Carmen Scheibenbogen, MD, Charité—Universitätsmedizin Berlin, presented her recent autoimmune therapy pilot study in which several symptoms very rapidly improved following the Immunoadsorption (IA) treatment. Dr. Scheibenbogen plans to extend this study into an additional cohort of patients to validate whether IA might be therapeutically beneficial for at least a subset of patients. Derya Unutmaz, MD, Jackson Laboratory (JAX), discussed the complex interaction of the gut microbiome and immune system. Exploring this intersection and how it could be influencing ME/CFS is a major project of the new NIH ME/CFS Collaborative Research Center (CRC) Dr. Unutmaz is heading up at JAX. Drs. Scheibenbogen and Unutmaz were joined in this session by Luis Nacul, MD, PhD, London School of Hygiene and Tropical Medicine, and Amir Landi, MD, PhD, University of Alberta.


Dr. Armstrong presents a slide on the current landscape of ME/CFS biobanks, databases, and registries.

In a Biomarkers, Biobanking, and Clinical Trials session, Carmen Scheibenbogen, Chris Armstrong, PhD, University of Melbourne, and Luis Nacul highlighted ongoing work to improve ME/CFS research networks, data infrastructure, and biobanking.

Roland Staud, MD, University of Florida, presented on his recently published neuroimaging study. Dr. Staud’s research group did not find evidence for global differences in cerebral blood flow in the brains of ME/CFS patients compared to healthy controls. However, they did find differential blood flow in specific brain regions that were particularly pronounced during the recovery period from a challenging mental task.

Nancy Klimas, MD, Institute for Neuro Immune Medicine at Nova Southeastern University, gave a presentation on her group’s multi-system approach to treatment development, using a computational biology approach in both ME/CFS and Gulf War Illness.

Vicky Holets Whittemore, PhD,  National Institute of Neurological Disorders and Stroke at the National Institutes of Health (NIH), gave an update on NIH efforts related to ME/CFS funding and research, including the intramural study of individuals with post-infectious ME/CFS.  Dr. Whittemore also announced an ME/CFS Research Conference to be held from April 4 – 5 on the NIH campus, in partnership with SMCI. Becky McNeil, PhD, RTI International, spoke during the final day of the conference about collaborative research networks and work in progress to develop a Data Management & Coordinating Center for the NIH CRCs. For more about this project, read an interview with Becky McNeil in this edition of Research 1st.

Cracking Exercise Intolerance: Betsey Keller, MD, Ithaca College, gave a compelling presentation about the utility of an exercise protocol in analyzing ME/CFS. Dr. Keller uses Invasive Cardiopulmonary Testing (iCPET)– a powerful way to measure an individual’s overall ability to produce and use energy. Dr. Keller is using this technique in a collaboration with Dr. Maureen Hanson to explore the physiological and molecular basis of the exercise intolerance characteristics of ME/CFS patients.


Dr. Cindy Bateman

An impressive slate of expert clinicians emphasized the need to capitalize on existing knowledge in the diagnosis and treatment of patients and disseminate this information. Alison Bested, MD, Nova Southeastern University, provided an overview of the clinical presentation of ME/CFS and how clinicians can provide care and support to patients now using management tools for the disease. Lucinda Bateman, MD, Bateman Horne Center, came to Montreal with the goal of “bring[ing] a message to clinicians about the tools we [currently] have in the clinic” , including the NASA lean test, that approach the level of objectivity in diagnosis. She mentioned her use of an Hours of Upright Activity (HUA) log and how sharply it delineates functionality in ME/CFS patients as compared to healthy controls –  1-7 hours per day of HUA in ME/CFS patients, as compared to approximately 17 hours for healthy controls. Peter Rowe, MD, Johns Hopkins Medicine, a pediatric clinician and the first to describe the link between orthostatic intolerance (OI) syndromes and ME/CFS, presented on clinical management of pediatric ME/CFS and comorbid conditions, including OI, connective tissue laxity, and adverse neural tension (inability of the nerves to elongate) across three conference sessions. Dr. Rowe noted there has been a failure by some researchers to account for data that has emerged on OI and that “the majority of adult and all pediatric studies show this physiological abnormality is strongly associated with ME/CFS” and that “pediatric ME/CFS, as in adults, has some of the worst quality of life”. Eleanor Stein, MD, University of Calgary, spoke about differentiating ME/CFS from psychiatric disorders and how to manage comorbid depression in ME/CFS. Dr. Stein emphasized in her talk that the “majority of patients do not meet the criteria for a psychological condition”. In another session geared toward patient education, she addressed neuroplasticity (the brain’s ability to form new connections and reorganize itself) and the therapeutic potential in ME/CFS.


Dr. Peter Rowe addresses what we’ve learned about the connection between ME/CFS and OI over the last two decades. 


Margaret Parlor, President of the National ME/FM Action Network in Canada with a charge to remember patient community perspectives.

The conference organizers incorporated a robust patient component into the conference. SMCI President Carol Head, participated in three interactive panel discussions that brought researchers, clinicians, advocates, patients, and other stakeholders together to discuss how to cultivate an international research agenda – one that will derive insight from the patient community, onboard a broader swath of ME/CFS allies with an emphasis on the next generation of researchers and clinicians, and accelerate the discovery of treatments.