As we recently reported, the Institute of Medicine proposed changing the name of chronic fatigue syndrome to systemic exertion intolerence disease (S.E.I.D.) in an attempt to challenge stigma and misunderstanding about the condition.
But will a new name be enough to lead doctors to take diagnosis and treatment more seriously, or will it continue to be a broad, misunderstood condition that is definitively not about being tired all the time?
Op-ed contributor for The New York Times and chronic fatigue syndrome patient, Julie Rehmeyer, put the reality of C.F.S. in focus:
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The hallmark symptom of chronic fatigue syndrome isn’t fatigue at all: It’s a dramatic worsening of symptoms after exertion (which for some patients can be as little as lifting a toothbrush). On top of that, patients have cognitive problems, sometimes so extreme they can’t talk or read; within half an hour of standing, their blood pressure drops or their heart rate soars; and sleep makes them feel no better. Most have additional symptoms, too, including pain and neurological and immune problems.
The problem for doctors is that objective diagnosis is difficult with limited resources for testing. A two-day exercise-to-exhaustion challenge on a stationary bike can identify a C.F.S. patient with reliable physiological measures, but patients can end up being much sicker for a period of time after testing.
Doctors could also examining the gene expression in the spinal fluid of C.F.S. patients after moderate exercise, but the research required for this is currently insufficient.
And then there is the problem with available treatment.
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Rehmeyer points out that there aren’t many effective options right now, but things could potentially change soon.
Rituximab, a lymphoma drug, has produced remarkable remissions in C.F.S. patients in a small study and is now undergoing a large trial. In my case, I have improved almost unbelievably by taking extreme steps to avoid mold, an approach that has become an underground movement among patients but that has received very little study.
For a positive shift in potential objective testing and treatment to occur, renaming the syndrome or just clearing up the misconceptions isn’t enough, Rehmeyer says. In order for real change to take place, “federal agencies will have to start making an investment in this disease that’s proportional to the devastation it causes.”
[Photo from Flickr user Kelly B]
