Category Archives: ME/CFS

Notes on lobbying Congress for ME/CFS funding

Hart-Senate-LobbyOn March 6, I accompanied the irrepressible Emily Taylor of the Solve ME/CFS Initiative to lobby members of Congress. Specifically, we urged them to add ME/CFS (myalgic encephalomyelitis, or chronic fatigue syndrome) to a list of diseases eligible for research funding from the Department of Defense. This post contains some reflections on the experience. Continue reading

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ME/CFS: Thiamine is key; coffee & tea inhibit it

As I’ve noted elsewhere, thiamine forms part of a suite of supplements that might counteract energy problems in ME/CFS. In any case, thiamine (or thiamin) is vital to energy production and other biological processes.

A lot of people think that coffee or tea is vital to getting enough energy, too. For years I was one of those people, and I looked for the instant tea with the highest tea and caffeine content. Yet I noticed over many hiatuses from tea – but not caffeine – that I actually felt moderately better without it. How could this be?

It turns out that tea, coffee, raw shellfish, raw freshwater fish, and other foods contain “anti-thiamine factors.” Continue reading

ME/CFS: My medications and supplements

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. Each item is on it due to either a doctor’s recommendation or a research finding.

Continue reading

Addressing Energy Problems in ME/CFS

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

ME/CFS: Dueling Hypotheses

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

Riding an electric bike with ME/CFS

IFS

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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Low cell metabolism plagues ME/CFS sufferers

IFS

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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