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'Post-exertional malaise' - Does It Need a New Name?

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Yes, another post about nomenclature. Seems my having this disease, which I'll call SEID, systemic exertion intolerance disease, is appropriate since there are so many problems in communicating about it and I am a communications specialist, due to interest and talent and skill. So, let's take on another term: "post-exertional malaise," aka "PEM." I'm not the only one seeing problems with this term. Donna Pearson, a patient advocate, said at this summer's Chronic Fatigue Syndrome Advisory Committee meeting that the CDC website described PEM as needing to rest in the car after going to the store, too tired to drive home. She astutely pointed out that our disease has both stamina problems and PEM, but they are not the same. She said disease experts can be sought to confirm this, but in her case, what has been described as PEM is delayed from the triggering activity, most of the time ~ 24 hours. She pointed out that since PEM is a distinctive sympt...
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Lessons Learned about Death in America

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We go through stages in life, ending in death. We see more sunrises and more sunsets, and the years behind us increase while the years in front of us decrease. Without our trying or ability to stop it, following a natural course, the experience of death becomes gradually more intimate until it brings the end to our own life.  In my case, the first was my great aunt, when I was about 9, who died from suicide. Although I went to the funeral, my youth and weather prevented me from getting a full funeral experience. It was a sunny day and my younger sister and I had matching made-by-hand green flowery pant suits with a halter top (think 1970s). I mostly played and giggled during the day, except after the funeral. Then a heaviness of heart, a cloud, came over me as I walked up the steps of my great-grandmother’s house. As time passed, the deaths came closer: my aunt’s close friend who died in a motorcycle accident, my grandmother’s close friend, my great-grandmother, my fath...
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December CFSAC Part 2: Touchdowns Will Win the Game

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In this Part 2 of my review of the December 2017 Chronic Fatigue Syndrome Advisory Committee meeting, I'll address a question discussed there: Should we target specialists or primary care doctors in a physician education project? Dr. Jose Montoya said in the meeting that the best place for the type of clinical care SEID (systemic exertion intolerance disease) patients need is in the specialist setting. I absolutely agree. Those who are our experts now give a long time to each patient, an amount of time that is not profitable for each patient in a primary care setting. Our medical care system is still set as a pay for service. "It's not unusual for primary care doctors' appointments to be scheduled at 15-minute intervals," says a 2014 USA Today article . This is not a match for our multi-system, multi-symptom, multi-treatment disease. Setting aside the time element, there is also the level of knowledge needed. Specialists are specialists because the...
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