By Bronc People living with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) are definitely not “just a little tired.” But they are indeed tired of some things — such as dealing with medical ignorance, the very slow pace of research, and seemingly endless discussions over terminology and definitions. But in science, precise terminology and precise definitions are absolutely essential in order
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By Bronc Dr. Amy Proal, of the PolyBio Research Foundation, is a microbiologist interested in the molecular mechanisms by which bacterial, fungal and viral pathogens dysregulate human gene expression, immunity and metabolism. She is especially interested in how dysfunction of the human microbiome and/or the human virome can contribute to chronic inflammatory disease processes. We sat down with Dr. Amy
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In the second of a three-part series, people describe the challenges of pursuing fundamental rights for patients with neuroimmune diseases in Mexico. If you haven’t already read the first part of this series, click here. Versión en español • Versão em português By Eric Pyrrhus “I hope that in the future there will be some doctor, organization or someone who
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In the first of a three-part series, people describe the challenges of living with neuroimmune diseases in Mexico. The science of these diseases is also discussed, and we try to understand why the latest science is not informing proper medical treatment. Versión en español • Versão em português By Eric Pyrrhus “On days when the symptoms are manageable, I walk
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by Jody Smith May 12th is a special day in the ME/CFS community. It was English army nurse Florence Nightingale’s birthday. In 1992 Thomas Hennessy, Jr. thought her birthday would be a fitting day for raising awareness for us. Why, you ask? Because Florence Nightingale was amazing. Not only did she help to create the Red Cross, and start the first
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By Bronc It was a warm summer evening and I was looking forward to watching one of my favourite films, when I received a text from my best friend. I expected the text to be a question asking me what film I was going to watch. Instead, he informed me that the night before he had attempted to kill himself.
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By Bronc Late last year Dr. Dane Cook, along with Dr. Jacob Lindheimer and colleagues, published a systematic review of research looking at pain as a component of post-exertional malaise (PEM) — which is also known as post-exertional symptom exacerbation (PESE). As seen with other components of PEM/PESE, any pain seemed to be delayed by 8-72 hours after exertion. Interestingly,
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Dr. William Weir is a retired physician who has treated ME/CFS patients for many years. He has spent the last few years advising the U.K. government’s National Institute for Health and Care Excellence (NICE) and has recently authored an article about dogma and science. Image courtesy of Dr. William Weir. by Bronc Dr. William Weir is a retired infectious disease
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by Bronc Dr. Mark Zinn and his late wife Dr. Marcie Zinn co-founded the NeuroCognitive Research Institute. He has expertise in quantitative and tomographic methods of electro-encephalographic analysis, in order to test theoretical premises in research involving neurocognitive disorders. From 2011-2014 he served as research consultant at the Stanford University School of Medicine, where he studied cognitive impairment in infection-associated chronic
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From the central nervous system to Long COVID to energy impairment, Dr. Anthony Komaroff provides his perspective on over 30 years of scientific research into myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) and post-acute viral illnesses. Versión en español • Version française • Nederlandse versie • Deutsche Version By Bronc and Eric Pyrrhus Dr. Anthony Komaroff is really on a roll. For a sometimes
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On August 8th our ME community honours Severe ME Understanding and Remembrance Day, this year and every year. Rachel M. shares her thoughts on living with Very Severe ME … By Rachel M. Hello. I’m Rachel from Queensland, Australia. I live with Very Severe ME. My Very Severe ME is clinically confirmed, according to Myalgic Encephalomyelitis International Consensus Primer for Medical
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In Spain, patients with neuroimmune diseases such as fibromyalgia or myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) have been disgusted at their government’s refusal to recognize them as seriously disabled human beings. This week brought news of a big step forward. By Eric Pyrrhus Versión en español • Version française • Deutsche Version In 2019 the Spanish government agency that oversees
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