here are a few quotes:
“the role of a community psychologist is to find [the patients’] voice and to give their voice expression; into research, into policy and the types of programs that can occur, and unless we basically get patients involved actively then there’s a very large player that’s not at the table and not part of the process of transformative change.”
“we [community psychologists] can be an objective scientist and impassioned at the same time, we can bring these two together, but the glue that brings them together is working with patient organisations who often can acclimate us, tune us in, to what the critical issues are. and with their feedback and their guidance we can get through the thickest forest, we can get through the fog, to basically the end of the path, which really involves second order change. what is second order change? second order change is really trying to deal with those powerful individuals who set up the status quo that sometimes has to be challenged, as it is in this particular area.”
“there’s other groups [besides IACFS/ME] that are out there, trying to make a difference. patients are out there creating polls, other patients are out there creating resources, other patients are out there creating opportunities for funding. there’s a tremendous amount of activity that’s happening where patients are taking charge to try and make a difference. there’s patients who are putting together interventions, where they are basically trying to, in a sense, rally support for change. there’s so much excitement going on in this field. truthfully, it’s almost like the hiv/aids field in the early 1980s. a very exciting time, to kind of see all of these forces coalescing, synthesizing, and the agitation for change is palpable.”
re: iom:
“the question is, to come up with new criteria, the first thing they should have is said ‘if we’re gonna come up with a new case definition, let’s test it out!’. so, in a sense, when they came up with the iom report, and i saw what their new criteria was, i took it, i set up a bunch of decision rules, i took a large dataset, and within 2 hours i was able to have data that could compare their case definition with other ones. the question i have is, why didn’t they do it?! so, in a sense, if you’re gonna come up with something new, you should first compare it with other things. and actually, for oxford university press which i write a blog for, that’s gonna come out tomorrow i’m gonna talk about that issue.”
what can the patients themselves do to bring about change?
“basically, get involved with people who are trying to bring about change. get on the bulletin boards, find the ones that reach you and basically speak to what you believe in and participate with them. become an active individual, educate yourself and get involved. if everybody who has this illness got involved we would transform the playing field that involves right now inadequate resources, inadequate services, inadequate ability to really service the people who have the needs.”
