Dear BoneBroth
Thank you kindly for the feedback and thoughts on the new survey. You're right with regard to the symptoms profile. It is probably the case that the core set of symptoms will reveal themselves in an unsurprising manner, as so many people on this forum have reported them. That said, there is to date, no quantitative, empirical data on the prevalence and commonality of these symptoms, and this survey goes one step towards getting that data. It is important to note that this is an anonymous one-shot survey, and so it won't be able to reveals clues about the progression of an illness. Only through matched longitudinal studies can such information reveal itself (matched referring to the ability to match data from the same individuals over multiple occasions).
Your points regarding the longtail of symptoms is also probably correct. POIS is an exhausting and debilitating condition, and over a lifetime it undoubtedly must take its toll on other organs and features of the human body -- most likely as a result of the stress it imposes upon sufferers. Stress can have varied and multi-faceted effects on a person. But these longtails symptoms, should not detract from the core symptoms, and that will show up un the data.
But let's not forget that symptoms alone do not define the condition entirely. Clues as to its aetiology can be gleaned from how they play out over the course of an attack, or over the course of a 24-hour cycle and how they interact and are affected by circumstances and environmental factors. One thing I noted with my own condition is that there are definitely times of the day and circumstances when it is worse than others, and that only bore out when I began a concerted effort to try to identify those conditions.
I am hoping that by surveying characteristics of the "behaviour" of this condition, it will reveals itself further and help yield clues as to the cause.
MW
