CONSENSUS: Ye Shall Be Judged.
The turmoil and politics of a Mast Cell Activation Syndrome diagnosis.
Reading time: 4-6 minutes (depending on brain fog)
It’s fair to say I have a chequered history with higher education. Thanks to Mast Cell Activation Syndrome (MCAS) I had to do a few stints before I got to wear my mortarboard and pose for that obligatory awkward graduation photo. I went to university to learn, naturally, but like everyone else, I also went for the late nights, pot noodles, communal laundry … and clubbing.
My mates and I could usually get in to most bars and clubs but every now and then we’d come face-to-face with Northampton’s answer to Dwayne “The Rock” Johnson and the “you’re not coming in” classic. The girls in our group, being braver than the boys, would sometimes have a crack at charming us through the door - but we still had a fairly abysmal hit rate.
There’s nothing more irksome than someone casually deciding your fate at random. No rhyme or reason. Just because.
And yet, that’s exactly what seems to happen when seeking an MCAS diagnosis. The process feels like it’s based more on luck and a Doctor’s whim than science.
But here’s the thing - there’s a reason this happens. And nobody bothers to tell you what it is. Helpful right?
“Why won’t anyone give me a straight f**king answer?!”
What nobody tells you is that there are actually two different “official” ways to diagnose MCAS. Not one. And that “why won’t anyone give me a straight f**king answer?!” you experience is usually rooted in the political tug-of-war between these two approaches. Allow me to explain.
As I mentioned, there are two different schools of thought in how MCAS should be categorised and diagnosed. They’re based on two different papers written by two different groups of Doctors with different specialisms.
Consensus 1
The first is called Consensus 1. It was first proposed in 2012 (Valent et al.) and bases an MCAS diagnosis on a combination of severe symptoms, specific lab tests (principally elevated Tryptase) and how you respond to treatment. Consensus 1 was created by a group of doctors with expertise in allergy, haematology, pathology and dermatology and with extensive experience treating Mastocytosis, the mast cell disease on which the MCAS criteria were based.
Consensus 2 (Too)
Then there’s, you’ve guessed it, Consensus 2. It was first proposed in 2011 (though gained traction in 2012) (Molderings et al.) and bases an MCAS diagnosis on a combination of acute and chronic symptoms, a range of lab tests, tissue biopsies and response to treatment. Consensus 2 was created by a group of doctors with expertise spanning genetics, haematology, oncology and immunology. The authors claimed to have seen over 500 patients they believed to have MCAS at the time they published their criteria.
Oh, and that “Too” is a little polite indignation from Consensus 2’s authors who wanted to acknowledge that other view points mattered too.
Having poked around a fair bit I think we can safely say that Consensus 1 is generally considered a strict set of criteria and Consensus 2, a broad set and less strict than Consensus 1. Both are valid.
What this means for you if you’re trying to reach a diagnosis is that Consensus 1 feels a bit like our Dwayne Johnson wannabe bouncer. He won’t let you into the club unless you’re wearing a designer suit, carry a members gold card and arrive in a limousine. Consensus 2 is the bouncer who stops you at the door but asks more questions, gets the measure of you and eventually decides to let you in - even if you did arrive in a 2001 Ford Fiesta with a missing hubcap.
The thing is, nobody warns you about the bouncers. Nobody warns you about the medical politics you’ll find yourself embroiled in when you dare to have the MCAS conversation with your doctor.
In an ideal world you really shouldn’t have to worry about medical policies and diagnostic criteria, especially when you’re feeling like hell, and most Doctors do their best to shield you from this kind of stuff. But, with MCAS, I’ve found the medical politics are almost impossible to avoid and I really wish Doctor’s had just been straight with me - I think we’d all rather a “it’s complicated” than an “MCAS isn’t real”. Nothing sours the Doctor-Patient relationship quite like bullshit.
Nobody likes to be judged, but that’s kind of the deal when you’re seeking a diagnosis. Doctor’s have to judge you according to a set of criteria to ensure they reach the correct verdict. Fair enough. But in the case of MCAS it really pays to know what you’re being judged against.
Both Consensus 1 and 2 are perfectly valid sets of diagnostic criteria. Each has its strengths and its weaknesses but the criteria your Doctor uses can significantly impact your diagnosis journey, how long it takes to reach a diagnosis or whether you receive a diagnosis at all.
Being armed with a basic understanding of the Consensus Criteria can not only help you know what to expect from your MCAS diagnosis journey, it can give you the confidence to ask questions, overcome hurdles, form a better relationship with your Doctor and crucially, identify whether any barriers you encounter are medical or political.
So when you next have a run in with a bouncer (or a Doctor), remember, knowledge is power. ◼
Judge for yourself
Take a detailed look at Consensus 1 and 2 side-by-side. Compare approaches, read the original documents and more…
M. //
