Tag Archives: ME/CFS

How I measure HR and HRV

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

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Monitoring my heart rate to manage ME/CFS

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

ME/CFS, Valcyte, and me: Third time lucky

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 casesand 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

Eriksen’s ME/CFS Hypothesis: An Update

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

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

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