The Harvard Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Collaboration is a partnership of leading scientists, doctors, and researchers from Harvard-affiliated hospitals and collaborators from Sweden and the United Kingdom who share a commitment to advancing research and developing effective therapies for this complex chronic disease.
The Collaboration also intends to establish a Center of Excellence, including infrastructure, dedicated staff, and shared resources for accelerating clinical research as well as providing much-needed services to the ME/CFS patient community.
These initiatives stand to impact millions whose lives have been overturned by ME/CFS, as well as millions more who suffer from Post-treatment Lyme Disease (PTLD) and Fibromyalgia (FM), which may share related pathophysiology.
All of these efforts require additional funding, much of which today comes from individual donors through the Open Medicine Foundation.
Areas of research
The Collaboration seeks to conduct “basic science” research — with emphasis on uncovering the mechanisms behind the most debilitating symptoms of ME/CFS — as well as clinical studies to identify new forms of treatment.
The defining feature of ME/CFS is post-exertional malaise (PEM) — the exacerbation of fatigue, cognitive disturbances and other debilitating symptoms after physical or cognitive exertion (with delayed onset by up to 24-72 hours) and often persisting for days, weeks, or even months. Our hypothesis is that the inflammation-related recovery mechanisms in ME/CFS patients are dysfunctional and that this delays post-stress recovery. To better understand the dysregulation involved in post-exertional malaise, the Collaboration will work to discover the multi-omic signatures of muscle in ME/CFS patients at rest and during recovery from muscular stress.
A second focus will be on the many neurological symptoms experienced by ME/CFS patients, including “brain fog” and altered circadian rhythms. The Collaboration will employ advanced MGH/HMS imaging techniques at the Martinos Center for Biomedical Imaging to test hypotheses related to microglial cell activation, vagus nerve signaling, and their role in neuroinflammation and disrupted autonomic and metabolic functioning in the central nervous system.
Autonomic dysregulation & orthostatic intolerance
An additional area of focus will be on the autonomic dysregulation and cardiopulmonary problems that contribute to fatigue, exertion intolerance, and orthostatic intolerance in ME/CFS patients, many of whom also exhibit Postural Orthostatic Tachycardia Syndrome (POTS). The iCPET Cardiopulmonary Laboratory at the Brigham and Women’s Hospital is conducting research on cardiopulmonary irregularities while also studying blood plasma proteomics and metabolomics of patients undergoing exercise stress tests. Any differences found in plasma indicators such as glycogenolysis, tricarboxylic acid cycle activity, lipolysis, insulin sensitivity modulators, or fatty acid oxidation could help explain the origin of fatigue in ME/CFS.
Establishing shared clinical resources
Today there are no FDA-approved drugs for treating ME/CFS. To expedite the creation of much-needed new treatments, the ME/CFS Collaboration seeks to develop two critical resources: the Clinical Trials Network and a new Center of Excellence.
Clinical Trials Network
The Clinical Trials Network will provide indispensable infrastructure for organizing pilot studies that evaluate potential treatments for ME/CFS as well as FDA-eligible pivotal trials for earning approval to make new treatments widely available. These studies may also involve evaluating the efficacy of other FDA-approved drugs for use in ME/CFS.
Center of Excellence
In the short-term, clinical trials will be conducted with the support of The Massachusetts General Hospital Division of Clinical Research, a cost-effective way to secure labs, staff research nurses, nurse practitioners, and other services and resources for these studies. But once a sufficient number of clinical studies are in progress, we aim to create a Center of Excellence for Chronic Complex Diseases, with dedicated staff for expediting this time-sensitive clinical research. By fostering collaboration between specialists who have long studied ME/CFS, Post-treatment Lyme Disease, and Fibromyalgia in isolation, we aim to break down barriers and share learnings, leading to new advances in the understanding and treatment of these related diseases. In addition to advancing clinical research, the Center of Excellence will provide comprehensive care (from healthcare to physical therapy to social services) for the long underserved ME/CFS patient community.
With early interest from a large group of leading clinicians and investigators at the Harvard-affiliated Hospitals, the proposed Center of Excellence has the potential to benefit ME/CFS patients across the globe, but its implementation will require significant additional funding.
This Collaborative Center is being supported by the Open Medicine Foundation (OMF).
Additional critical collaborators include: Stanford University, University of Birmingham, UK, University of Nottingham, UK, (which comprise the MRC-Arthritis Research UK Centre for Musculoskeletal Ageing Research), Cornell University, Uppsala University, Sweden, and Pacific Northwest National Laboratory (PNNL).
Massachusetts General Hospital
Ronald Tompkins, MD, ScD
Wenzhong Xiao, PhD
Donna Felsenstein, MD
Jonathan Friedstat, MD
Daniel Irimia, MD, PhD
Amel Karaa, MD
Michael VanElzakker, PhD
H. Shaw Warren, MD
Yongming Yu, MD, PhD
Andrew Alexander, MBA
Ronald Davis, PhD
Maureen Hanson, PhD
Uppsala University, Sweden
Jonas Bergquist, MD, PhD
Brigham & Womens Hospital
David Systrom, MD
Anthony Komaroff, MD
BI Deaconess Medical Center
Janet Mullington, PhD
University of Birmingham, UK
Janet Lord, PhD
University of Nottingham, UK
Philip Atherton, PhD
Paul Greenhaff, PhD
Pacific Northwest National Laboratory
Richard Smith, PhD
John Jacob, PhD
Wei-Jun Qian, PhD
Open Medicine Foundation
Chris Armstrong, PhD