Very cute, Sue.
With all due respect, Alice, the "why" does matter. And I don't believe it is a simple, one reason answer.
If researchers or doctors can figure out the reasons why someone with MG has a negative SFEMG, then maybe they can not only stop proclaiming it as a "perfect" test but can also come up with other ways to diagnose MG. Or ways to improve on how the SFEMG is done, like increasing the amplitude to counteract a "thick" layer of subcutaneous fat. Or testing muscles other than the standard EDC (forearm) or frontalis (forehead) muscles.
MG is dangerous and patients with this stupid disease need to know they have it, not be told they "possibly" or "probably" have it and then wait years to get proper treatment. Insurance companies don't authorize more treatments sometimes when you "might" have a disease. To remain undiagnosed due to a lack of information getting to doctors is one thing but this goes beyond that. The MG "experts" out there are still proclaiming this out-dated information about the test. So unless someone gives very exacting reasons why the SFEMG doesn't often come out positive, it's highly doubtful that line in the sand will be erased.
After that cosmic shift in thinking, then they can give doctors the "tools" to adapt their own thinking, depending upon each patient's individual circumstances. Of course, thinking that they'll act outside of protocols is fairly naive. They need a new, sensible protocol.
And the problem with quoting Chloe Atkin's book to any doctor is that it's written by a patient and unless an opinion is repeatedly published in JAMA, the likelihood of any doctor taking it seriously is nil. Peer pressure, as you know, is alive and well in the doctoring world. I'm afraid it's going to take a lot of people to gently push "experts" in a better direction. MG patients don't deserve to wait for this thinking to evolve.
Annie
I also think that the "average" jitters for certain age groups needs an overhaul (see attached file). There's no such thing as "average" anything, such as intelligence, physical strength, critical thinking, etc. How do they know that a jitter at age 10 isn't lower, especially if someone has had MG since birth. What if a jitter stops increasing once you get a NMJ disease?!
Erik Stalberg, the inventor of the SFEMG, isn't doing these problems any service either. Who would admit that their invention isn't what it's cracked up to be?