I've gone through a cycle re: the naming thing.
I am probably one of few Americans actually diagnosed using the label "ME/CFS" because it was CCC that was used as the dx criteria, and that's what the report calls it.
Most Americans are diagnosed with "chronic fatigue syndrome", not ME or even ME/CFS, though popularity of the latter two is growing in the US.
After reading one of Jason's epi papers on how others clinicians view the respective names, I agreed that the name was a serious issue. I called it 'ME' and told people that was my diagnosis, because I knew people would view that diagnosis with greater respect.
But then I realized how many people had the CFS label while still having or even all of my symptoms:
they received that label because of geography. Even conservative estimates show that
over half of those who meet Fukuda also meet CCC. We could say that their diagnosis should shift then, but again it all depends on access. Fukuda certainly doesn't
forbid PEM as a symptom, it just doesn't
require it.
[Edit:
@Dolphin pointed out that Chu's study showed that
99% of people with Fukuda have PEM; this is likely because of how those patients were recruited -- many from specialist centers in the US, from doctors who already understand what ME "looks like". I found an older study that has a likely more accurate percentage breakdown if you cast a wider net.]
Present day, anytime someone asks me about the disease, I say 'myalgic encephalomyelitis' if it's in passing. But if it's part of a conversation, I use 'chronic fatigue syndrome' and talk in depth about the severity of the disease: PEM, feeling like you've gone septic after 15 minutes of exertion, immune dysfunction, people unable to move and fed through a tube. Clinicians in the United States are going to see the CFS label everywhere. It's not leaving tomorrow. And so I want people to know that those with the label of 'chronic fatigue syndrome' may have a very serious presentation.
I would rather people understand
the label of CFS in the US means a debilitating illness. This is the label my mother got when she was in liver failure and weighed 85-lbs. This was the label they gave EdPhD before she passed away. Did they not have "real" ME because of the label their doctors chose? Was it all a conflation? A mistake? Really? It was "just fatigue"?
I'm aware of the passel of disorders where I meet the diagnostic criteria, and am aware of at least six separate disorders with which I could have been accurately diagnosed: I'm well aware of what a crapshoot it is what label a patient receives. It's signs & symptoms + chance.
I'm cool with the "ME
and CFS" idea, and the "ME/CFS" idea, and the "ME" idea, and the "whatever, I don't care if I
get care" idea.
But I view the
us versus them mentality as inhumane. It's clear to me that there is a group bent on creating a second class of patients: making one group into the 'undeserving ill' so as to elevate ourselves. I'm
not okay with the narrative that there are 'real' patients who have 'ME' and 'false' patients who have 'CFS'. I'm not okay with CFS being a nonentity. There are people who
do meet Fukuda without meeting CCC (that just-under-half) and they're still sick. I still want to help them. I still feel that they're part of our tribe.
I'm not okay with throwing them under the bus.