Researchers
A selection of top ME/CFS and Long Covid Researchers
Dr. Ron Davis, Stanford University
“If you get ME/CFS your life as you know it is over, and that is really sad because it hits people in the prime of their life.” (Source)
Dr. Akiko Iwasaki, Yale University
“ Long Covid can impact any part of the body. It’s really not a respiratory-only disease, at all. It basically involves every organ system that one can imagine, starting with the central nervous system, the peripheral nervous system, the GI tract, the respiratory, cardiac, musculoskeletal system, just basically everything. Depending on the person, it may be a set of organs that are involved or just one. There’s a huge heterogeneity, but I don’t think any organ is spared from the impact of long Covid.” (Source)
Dr. David Systrom, Harvard University
Physician, Brigham and Women’s Hospital; Assistant Professor, Harvard Medical School.
“And in about 45% of ME patients with the vascular abnormalities, we can demonstrate with a skin biopsy that there is either definite or probable evidence with nerve density or neurite density in the epidermis of the skin of something called small fiber neuropathy.
Just briefly on that, the small fibers have a lot of functions. It’s been known forever that they mediate pain, so they’re very much the same as the pain fibers. They’re unmyelinated small fibers that are in multiple organs, but especially in the skin where we can sense pain. But more recently, largely neurology has come to recognize that they play autonomic nervous system function as well, sympathetic, and parasympathetic function. And what we think we’re seeing in ME and in Long COVID is this association between the absence of the nerve fibers on the skin biopsy and then blood vessel dysregulation, both venous and arterial during upright exercise.” (Source)
Dr. Amy Proal, PolyBio Research Foundation
“Infection-associated chronic conditions like Long Covid and ME/CFS are not mysterious or hopeless. The opposite is true: we can use new tools to study pathogen activity, environmental exposures, microbiome imbalances, neuroinflammation, gene changes, and other issues in patients with such conditions. PolyBio brings together some of the brightest minds in science to research these topics in a proactive and open-minded fashion.” (Source)
Dr. Michael VanElzakker, Tufts University/PolyBio Research Foundation
“I would also add rat/mouse studies showing that a pathogen doesn’t have to be fully “active” for nerve and glial tissue to sense its presence. Many viruses persist in latent, chronic forms that aren’t detected well on blood tests but could still be contributing to symptoms.” (Source)
Dr. David Putrino, Mt. Sinai
“It should be fairly well-established at this point that many people with conditions like #LongCOVID and #MECFS have evidence of mitochondrial dysfunction, oxidative stress and imbalances in lactic acid levels. In fact, these are some of the most robust examples in the literature of how people with these conditions differ from the general population.” (Source)
Dr. Resia Pretorius, Stellenbosch University, South Africa
“Acute Covid-19 is not only a lung disease, but significantly affects the vascular and coagulation systems…In blood from patients with long Covid, persistent microclots are resistant to the body’s own fibrinolytic processes. We found high levels of various inflammatory molecules trapped in the persistent microclots, including clotting proteins like plasminogen, fibrinogen and Von Willebrand factor (VWF), and also Alpha-2 antiplasmin (a molecule that prevents the breakdown of microclots)…The presence of persistent microclots and hyperactivated platelets (also involved in clotting) perpetuates coagulation and vascular pathology, resulting in cells not getting enough oxygen in the tissues to sustain bodily functions (known as cellular hypoxia). Widespread hypoxia may be central to the numerous reported debilitating symptoms.” (Source)
Dr. Ian Lipkin, Columbia University
“This study delivers what has eluded us for so long: unequivocal evidence of immunological dysfunction in ME/CFS and diagnostic biomarkers for disease…The question we are trying to address in a parallel microbiome project is what triggers this dysfunction.” (Source)
Dr. Lucinda Bateman, Bateman Horne Center
Professor of Surgery, Harvard Medical School; Chief of Trauma, Burns and Surgical Critical Care Service at the Massachusetts General Hospital; Chief Of Staff, Shriners Hospitals for Children in Boston.
"I think the most important takeaway, or something I would like everyone, particularly clinicians, to know ... is this illness is devastating. It impairs the ability to function physically and cognitively. And if you try to push through, sometimes things get worse and worse. That may be why it's a progressive illness, in the way we're seeing it. We need to understand that science better. But until then, every clinician who encounters patients needs to be careful about giving their patients support. Helping them pace or downsize their activity to minimize symptom exacerbation, and give them what they need to function with their impairments." (Source)
Dr. Maureen Hanson, Cornell University
“I am very aware of the seriousness of the disease and how it affects patients’ lives since my adult son has now been ill for 20 years and has missed many of the mile- stones of adolescence and young adulthood. Fortunately, he is not bedbound, though he is largely housebound and must spend much of the day horizontal. After he was diagnosed, I attended the IACFS [International Association for Chronic Fatigue Syndrome] meetings in 2004 and 2007, where I realized that very few molecular geneticists were studying the disease...I knew that I could contribute to knowledge of ME/CFS and thus 10 years ago, I began seeking grant support to initiate biomedical projects.” (Source)
Dr. Nancy Klimas, Institute for Neuro Immune Medicine
“My H.I.V. patients for the most part are healthy and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or care for their families. I split my clinical time between the two illnesses [AIDS and CFS], and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million (to 4 million) people in the United States alone, has had a small fraction of the research dollars directed towards it.” (Source)
Dr. Peter Rowe, John’s Hopkins University
“I think we need a Ryan White initiative like what happened with pediatric HIV back in the day that provided funding for young scientists and clinicians in a field that might not have been as attractive as others at the time, but it created a network of clinics that collaborate on clinical trials and care of the patients.” (Source)
Hannah Davis, Patient Led Collaborative
“Prioritize patient-led engagement. #NothingAboutUsWithoutUs & related concepts shouldn't be new to anyone in this space, whether they are a patient or ally. Advocacy issues should be decided by patients; patient voices should be highlighted (not going through a middle person).” (Source)