If you were going to frame an umbrella term to comprise related diseases like ME, EDS, fibro, MCAS, POTS, endo (and others), what would you call it?
Note: I’m not talking about a scientific umbrella. We don’t yet know enough to say that there’s an underlying biological relationship and if there is, between which diagnoses, and for what reasons.
We just know that these conditions tend to flock together, whether for scientific reasons or social ones (e.g., diagnostic uncertainty).
To give one concrete example of a problem that is part social, part scientific, the ME-ICC includes symptoms common in ALL of these conditions except endometriosis: onlinelibrary.wiley.com/doi/full/10.11…
It describes what we think of as “core” to ME (i.e., post-exertional malaise) but also hypermobility, dysautonomia, neurological symptoms, mast cell symptoms.
I watch this Dysautonomia International video and think, “yup” (it describes POTS as core but then grows to include nearly ALL the symptoms mentioned in the ICC).
I’m sure there are analogies in the EDS, mast cell and perhaps even endometriosis communities (endo is a question mark for me, I just know so many people with ME, EDS, POTS or MCAD who have it!)
So while we are still trying to understand the edges and relationships, while people are constantly misdiagnosed or mistreated, what is the frame that helps us come together and have a broader conversation?
Without implying that this is all one thing or that everyone has the label that comports with any individual’s particular diagnosis or theory of the world?
Signed, a patient who does not meet ANY EDS criteria by a long shot but has ME, POTS, MCAS, IIH and probably AAI/CCI. But whose symptoms are perfectly described by the ME-ICC.
I think the name/frame might need to be abstract. Like “Spoonie” or “Gordon Knot”
Think HASHTAG, not ICD code! Sorry I was unclear in my original post but this is meant to be informal.
