M.E. Advocates

In 2011, Jen became suddenly ill after an acute viral infection. By 2012, she progressively lost the ability to read, think, or walk. “When doctors could not figure out what was wrong with me, I faced intense medical skepticism and neglect. I was misdiagnosed with conversion disorder (a modern name for hysteria) and became bedridden.”
She was diagnosed with myalgic encephalomyelitis (ME), (commonly called “chronic fatigue syndrome,” a condition that is the same or similar to what many people with “long COVID” face). She saw specialists, met all their clinical criteria and went through extensive testing to help confirm the diagnosis.

In 2006 Ryan Prior was a healthy, athletic high school student when he became ill with ME/CFS. After graduating college and becoming a journalist he wrote an article for USA Today: College Viewpoint: The real story of chronic fatigue syndrome and received so much feedback that he realized he needed to do more to report on the disease and produced a documentary: "A Film That Tells The Great Under-Reported Medical Story Of Our Time." His crowdfund raised $120,000 for Forgotten Plague. Prior and his then-girlfriend, Nicole Castillo, co-directed. Prior also founded the The Blue Ribbon Fellowship to educate students in the disease ME/CFS. Currently only 5% of medical schools have proper curricular, research and clinical standards of care for the disease.

An award-winning freelance math and science journalist and contributing editor at Discover magazine. Her work has appeared in the New York Times, the Washington Post, O Magazine, Discover, Science News, Aeon, Wired, High Country News and many other publications. Her memoir, Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand was published by Rodale Press in May 2017. It describes navigating the science and politics of poorly understood illnesses, based on my experience with chronic fatigue syndrome. I have also written several articles on the topic.

A multi-award-winning soprano who “knows exactly what to do with an absolutely gorgeous voice” (Review Vancouver). Praised for her “definite aptitude” (Opera Canada) as the founding artistic director of Opera Mariposa, Canada's first fully disability-run opera company, she is also an internationally-recognized disability and chronic illness advocate who has raised over $125,000 to date for chronic neuroimmune diseases such as Myalgic Encephalomyelitis (ME), with which she has lived since age six.

I live in the UK and at the beginning of 1990, a couple of months before my 13th birthday, I fell ill with ME. My deterioration was rapid, and within a short time, I was very severely affected. Completely paralyzed and in agonizing pain, my family and GP feared that I would die at any moment. Despite the obvious severity of my illness, I experienced disbelief, hostility and abuse from many medical professionals. The damage of this treatment was to prove more profound than the illness itself.

Jean has the unique distinction of being the world’s only Emmy-award winning, chronically-ill and disabled, rabbinical-school drop-out. She also became an outspoken advocate for the disease, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). In 2012, Jean ended her rabbinical studies and spent many years homebound due to this disease.

Rivka Solomon is a writer and patient advocate for myalgic encephalomyelitis (ME). She resides in Massachusetts. In 1990, while studying international relations at graduate school, Solomon became ill with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and has remained ill since.[1] Her advocacy work includes coordinating protests and writing articles about ME/CFS.

Scott is a medal-winning triathlete who is a three-time member of the national triathlon team in his age group. But now, on good days, he can walk for 10 minutes on flat ground. He says he can accept his ME diagnosis with its bleak prognosis, but not the harms the Canadian health care system perpetuates on its citizens suffering with ME. He has experienced the very best research and treatment of HIV to non-existent research funding and either no or harmful treatments with ME.

Dr Nina Muirhead is a British specialist surgeon in dermatology who has myalgic encephalomyelitis. She is a graduate of Oxford University, UK, and has written a number of popular medical textbooks. Dr Muirhead educates other doctors about ME/CFS and is part of Forward-ME, a group of UK charities and advocates for people with ME/CFS.

Nina Muirhead described experiencing a number of different illnesses in a short space of time, and trying to continue her busy life including carrying out surgery, looking after her two young children, continuing to exercise and socialize. After attempting to push through despite symptoms, she eventually deteriorated to the point where she struggled to walk and felt no longer safe to operate, and took time off work. After her ME became severe, Dr Muirhead spent several months being nursed by her parents, with neurological, sensory and cognitive symptoms that she thought might indicate some kind of brain tumor or Multiple Sclerosis. She was initially diagnosed with glandular fever, then ME. Although her health has improved significantly, Dr Muirhead still has ME, and has is forced to severely limit her working hours, and has experienced several failed returns to work. Dr Muirhead found that pacing did help her, especially doing tasks on different days and not working consecutive days, as well as anti-viral treatment, and vitamin B12 injections.

Dave Tuller, DrPh, is a Senior Fellow in Public Health in Journalism at the Center of Global Public Health, School of Public Health, University of California, Berkeley, California and regularly writes about research on myalgic encephalomyelitis and chronic fatigue syndrome and other frequently misunderstood illnesses. Previously to his current appointment at Berkeley in July 2017, he was academic coordinator of the University of California, Berkeley's joint masters program in public health and journalism. He worked as a reporter and editor for ten years at the San Francisco Chronicle, served as health editor at Salon.com, and frequently writes about health for The New York Times.

Sabrina has worked within the private, public and not-for-profit sectors for over 20 years. Her background in politics, education, entrepreneurship and community development has provided her with a wealth of experience that she has been able to call upon in her contributions to the ICanCME Research Network. Sabrina is also a patient who lives with Myalgic Encephalomyelitis (ME) and several co-existing conditions.
In 2018, she was invited to become a Research Ambassador for the Institute of Musculoskeletal Health and Arthritis (IMHA) at the Canadian Institutes for Health Research (CIHR).

“Doctors with M.E.” Founder and Director, Dr. KN Hng, is a British physician with ME/CFS. After falling ill with M.E. she authored the books Doctor with M.E.: My journey with “Chronic Fatigue Syndrome”, and “M.E. and Me: A Doctor’s Struggle with Chronic Fatigue Syndrome” for medical audiences.

Dr. Hng contributes to research, education and other collaborations. She led a group submission by over twenty experts, scientists, organisations and patients to NICE for the consultation on their new ME/CFS guideline (published in 2021).

Dr. Hng has produced many other resources which she makes available for free. These resources are continually updated, and many are also available in multiple languages, with translation work ongoing. This includes dissemination via one of the largest online communities focused on ME/CFS, which she established (www.DoctorsWith.ME)