Like anyone with ME/CFS, I have a harder limit on my daily activities than most people do. Not only do I have little capacity at each moment, but exceeding an unknown threshold will result in ‘post-exertional malaise‘ (PEM: a significant worsening of my condition) a couple of days later. To describe these limits on our energy, many people with chronic diseases like to call themselves spoonies. This term refers to energy depletion through the odd metaphor of a spoon supply being used up. I think we can find a better term.
One of the problems I have with the metaphor of spoons is that I’m simply not concerned about using up actual spoons on a daily basis. In fact, I reuse spoons all the time (generally, after washing them). And the real-world penalty for running out of spoons doesn’t seem so onerous.
Elsewhere I explain how I use my heart rate (HR) to manage my chronic disease. In this post, I will describe my equipment, which also allows me to monitor my heart-rate variability (HRV). In short, I pair a Garmin Vivoactive 3 smartwatch to a Wahoo Tickr Fit armband; the watch measures HRV well but does a poor job with HR during low-level activity—which is about all I do.
Here are the details, including reasons for not choosing competing products: Continue reading
One of the basic bits of advice for people with ME/CFS is, “Don’t overdo it.” But, given the delayed reaction of PEM (post-exertional malaise), how can we know whether we’re exerting ourselves too much? Some medical professionals urge patients to monitor their pulse, or heart rate (HR), to stay within their energy envelope. Like many others, I follow this advice. But I believe that the focus on HR, and especially on a specific rate of beats per minute (BPM), is simplistic and actually can lead to ‘overdoing it.’
The first reason to not depend solely on heart rate is that psychological stress can cause PEM, too. This stress can be due to positive or negative situations, and the heart rate doesn’t have to rise as high as it does during overexertion to cause PEM. For example, while teaching a college class for 80 minutes twice a week (my only real activity), I feel low-level excitement, and my HR stays well below the rate that I can sustain for that length. Yet this excitement causes PEM. So exertion isn’t everything. (It would be great if researchers addressed this.)
The rest of this post discusses my approach to managing my exertion using heart rate. I list the equipment I use in another post. Continue reading
In this post, I describe my improvement—and problems—while on valganciclovir, aka Valcyte. Before deciding to take this powerful but dangerous medication, I read a lot of other patients’ accounts, and I hope that my experience will help others in the same way.
Do herpes viruses cause or contribute to ME/CFS? This question continues to roil researchers, medical specialists, and patients. My evolving belief is that they do contribute in some but not all cases—and certainly in mine. One reason reason for this belief is my experience on antivirals, especially Valcyte.
The big picture
I’ve taken valganciclovir three times and had three different results, but each time at least one symptom-trigger disappeared. Under my current regimen, I’m able to teach a college course, which is a wonderful resurrection. Continue reading
In June 2017, I put out a series of blog posts about Dr. Willy Eriksen’s hypothesis regarding the causes and potential treatment of ME/CFS (myalgic encephalomyelitis, aka chronic fatigue syndrome): summary, interview, and reaction. Now, in September 2018, Dr. Eriksen has provided an update:
Has your hypothesis changed since you published it?
No, my hypothesis is the same. So far, I have not seen any study results that have convinced me that the hypothesis is wrong.
Have your ideas regarding potential treatments changed? Continue reading
On 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
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
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.
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