Finding and affording a specialist for myalgic encephalomyelitis (aka chronic fatigue syndrome) is difficult, and the two I’ve consulted have different approaches. So I thought I’d share some of my experience.
Hopefully, the following list will help other people with the disease. (I’ve probably failed to include some things that didn’t work.) Each item is on it due to either a doctor’s recommendation or a research finding.
Continue readingPosted in ME/CFS
Tagged Chronic fatigue syndrome, ME/CFS, Myalgic encephalomyelitis, Nutrition
In this video, I research ways to address energy problems in ME/CFS and try a couple of new approaches. One worked, albeit incompletely. The script, with links to sources and products, is below.
In a couple of other videos (here and here), I’ve discussed recent findings regarding energy problems in the cells of people with ME/CFS. (That’s myalgic encephalomyelitis, or chronic fatigue syndrome.) In this video, I try to figure out what I — a person with this disease — might do about it. And then I do it, with some success. As usual, I’ve simplified the biological details. Continue reading
Here’s a video with a simplified comparison of VanElzakker’s Vagus Nerve Infection Hypothesis and Eriksen’s “ectopic lympoid aggregates” hypothesis.
Here’s the script: Continue reading
Recently I rented an electric bicycle and rode it for three hours and twenty-seven miles. That was too much for me, but I’m excited about the bike for shorter rides. I thought I’d share my experience in case others with relatively moderate ME/CFS (myalgic encephalomyelitis, aka chronic fatigue syndrome) are considering buying one.
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Posted in ME/CFS
Myalgic encephalomyelitis, commonly known as chronic fatigue syndrome or ME/CFS, is a disease of many mysteries. Even the most fundamental questions remain unanswered: how does ME/CFS develop, and how can patients recover?
Researchers across the globe are addressing different aspects of this enigma. They seek to uncover a fundamental disruption that underlies the array of symptoms – or at least to identify an exclusive test result, or biomarker, that a general practitioner could use in making a diagnosis. Some labs focus on immune function, others on the gut microbiome, aerobic energy, or brain inflammation, among others.
Promising results are common, but two recent studies of cell metabolism have garnered special attention for their potential in both aiding diagnoses and explaining what goes wrong.
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Recent research suggests that levels of vitamin B6 in the gut distinguish sufferers of ME/CFS (myalgic encephalomyelitis, aka chronic fatigue syndrome) from healthy people. “Good enough!” says I, “I’ll give it a shot.”
First, though, I looked for information on the most effective form and dosage. Here’s what I found:
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Posted in ME/CFS
I took a physiology course so you don’t have to! I’ve combined some surprising basics with key terms and research on myalgic encephalomyelitis (aka chronic fatigue syndrome) into less than six minutes. And I’ve tried to keep it fairly simple.
Here’s the script: Continue reading
My wife and I recently saw Jennifer Brea‘s film Unrest at the AFI DOCS festival. We both found it moving. Here’s my review – and my reaction as a person with ME/CFS:
Posted in Aesthetics, ME/CFS
Tagged Chronic fatigue syndrome, ME/CFS, Myalgic encephalomyelitis
[Update from Sept. 2018 here!] After reading my original posts on his hypothesis (summary, interview, and comments) explaining ME/CFS (myalgic encephalomyelitis, or chronic fatigue syndrome), Dr. Willy Eriksen sent me additional information regarding a couple of remaining questions. These are: 1) how his model accounts for problems in the gut and 2) how glial cell activation could require weeks to die down after rituximab treatment but only days for post-exertional malaise (PEM). I’ll provide his answers here, although I’ve inserted them in the original posts as well. Continue reading
[Update from Sept. 2018 here!] This interview with Dr. Willy Eriksen, a research professor at the Norwegian Institute of Public Health, is the second of three blog posts on his hypothesis regarding the cause of and potential cure for myalgic encephalomyelitis, aka chronic fatigue syndrome (ME/CFS). Here I ask Eriksen to elaborate on his published hypothesis. So please see the first post for a summary of his hypothesis in relatively plain language—or, if you have access, read his journal article, “The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis of ME/CFS.”
In the third post, I consider Eriksen’s model in comparison to other recent research and my own experience. Continue reading
Tracy Duvall 