Just My Honest Opinion

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...

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...

The December Chronic Fatigue Syndrome Advisory Committee meeting reflected much progress. It's refreshing to see some new faces taking up the advocacy. As one group let's go or moves on or dies, another takes hold of pushing the government forward, giving voice to the patient experience. And they do so with such credibility, bringing passion and reasonableness, and real-world patient and professional experience. Our patient and patient organization advocates are themselves experts. They are impressive in what they bring to the discussion. And I just can't get over the difference in attitude and effort and knowledge of our current ex-officios (except a few, of which I'll address later). I remember when the FDA ex-officio slept during the meetings--and when he had to participate, showed himself to be a real prick. I just can't get over how knowledgeable the current FDA rep Dr. Keith Hull is about our disease. And I've not seen him before. Very impressive. He...

Day after day, from my bed, I watch my social media newsfeeds for some news on my disease, especially for anything happening locally in Alabama. But news, by nature, often comes when not expected. And this happened in October, while I was watching a video from Open Medicine Foundation of a presentation at the International Association of CFS/ME conference . Dr. Jon Kaiser was speaking, and he said: “There’s a researcher named Victor Darley-Usmar at the University of Alabama, who works with the Seahorse company—and I think he’s a genius. He is developing an equation to take all the data that the Seahorse test provides and distill it down into a single number called the—he calls it the ‘BHI,’ the bioenergetic health index. So, you know, it would be like getting a PSA or [inaudible]. You get a bioenergetic health index from a blood sample, looking at white blood cell mitochondrial energy production. So I think that’s the cutting edge of this field, and once we start sending our patient...

Those who follow my blog know I was disheartened at the negative reaction to the Institute of Medicine's report suggesting "systemic exertion intolerance disease" be the new label for "ME/CFS." I predicted that insisting on "myalgic encephalomyelitis" will leave us with the status quo, which means the disease will continue to most commonly be known as "chronic fatigue syndrome." My prediction, thus far, has proved true. I have spoken to others who share my view and actually prefer "SEID." I said, "Shouldn't we also be advocating for what we think is best?" I was told, "Give it up. The ship has sailed. It's over. Move on. Science will solve it." This greatly disturbs me to the point of tears. We have this opportunity, and we are squandering it. How many more years must we be stuck with harmful disease names? The reason the name wasn't changed in 2003, our last opportunity, was because science would...