About two weeks ago, there were some frantic posts about a recently published paper around criteria for MCAS and how this paper would change things/affect people. At that time, I told people I was working on a response and would get it out as soon as I could. I started working on it pretty much immediately.
What didn’t occur to me at the time was that it would be really difficult to explain the context and meaning around various sets of criteria without literally going through all the literature exhaustively and showing how different groups of researchers and clinicians define MCAS and how that has changed over time. As far as I can tell, this information had never been compiled in an accessible format. So I just did it myself, from 1991-2019.
This information forms the basis of a multipart series I’m posting on MastAttack entitled “A History of Mast Cell Activation Syndrome: Living Criteria and the Lives They Define.” In this series, I will discuss in very explicit terms how these various sets of criteria were devised and why – specifically, who did clinicians and researchers envision as the population who had MCAS – and what did MCAS mean to them at the time they defined it in that way. Additionally, I will include information on how clinicians intended to treat these conditions at the time they were defined – arguably the aspect of MCAS management that most affects safety and quality of life for patients.
I wrote this introductory “this is what’s coming your way” post instead of launching right into the meat of this series to set the tone for the discussions that I am sure (and hope) will ensue around these posts in the week to come. I hope that everyone will approach this with a sense of openness and fairness. I will try to do the same and will trust the community to let me know if I don’t meet that expectation.
I also want to be clear about the fact that there will be frank discussion of various treatments for MCAS patients, including the use of IV diphenhydramine, tyrosine kinase inhibitors, and other chemotherapy agents. Be respectful of the fact that many MCAS patients have severe and dangerous symptoms that require aggressive management. I know that information about this topic has been restricted in the past, including by me, for professional reasons. I am happy to be able to discuss this topic more openly now and look forward to making this information more accessible both for patients and for providers.
It is my sincere hope that as a community we can move away from the idea of “these criteria are the right criteria” and “these criteria are the wrong criteria” despite the fact that we all – including me – have a set of “pet criteria” that we think of as being most accurate. It’s not just unhelpful, it’s damaging both to patients and to the community, which is often perceived as disorganized and divided. By having a clear understanding of what these various criteria are, and what purpose they serve in various research and clinical groups, I believe it will be much easier to have meaningful conversations around the different forms of mast cell disease and how best to serve the people who live with these conditions.
Ask any questions you would like as the information in this series is shared (the MastAttack Facebook group is the best place to reliably get responses from me). References will be at the bottom as usual for my technical posts. I trust the community to fact check me and please let me know if I have made a mistake in anything shared so that I can correct it as quickly as possible.
While I have your attention, I would like to update you on a few other things as well. I think most people know that my health took a pretty serious downward turn about a year ago. Shortly after that, my father died. For obvious reasons, I was unable to continue working on a lot of ongoing MastAttack projects and could not keep up with consult requests or email questions. I appreciate your patience and understanding as I’m getting things sorted out again. I am happy to tell you that I will be wrapping up the 107 series in the next couple of months. I will share more specific information about other projects as things develop.
Thanks for your help and support. I have really missed being involved in the community and look forward to reconnecting.