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’ll explain 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
As I write this, the sky is pouring cats and dogs on D.C., as it has been for the past several days. In fact, it’s record-setting. Elsewhere in the world, there are people frying eggs on the sidewalk where before they might have prepared a delightful salad. But just a few weeks ago D.C. had unusually dry weather. And last winter we suffered through a bizarrely consistent stretch of cold. In short: we’re living through turbulent times.
Inevitably, news stories ask whether each of these unexpected weather events is “caused by global warming.” Continue reading
Washington, D.C., like other cities around the world, is trying to eliminate traffic deaths through a program called Vision Zero. Inspired by Sweden, this has been a model project in many ways, but the lack of positive results is testing its proponents.
Effecting change per se is my topic here, rather than the specific alterations that D.C. et al. have wrought as part of Vision Zero. 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