Thanks guys, I don't think I understood you. Let me explain what's going on / where we are in the process.
One of my ME issues is that I have a really hard time judging what is important versus what is unimportant information; it all seems equally useful to my ME-brain. I also noted that the RFI specifically asked for evidence for each thing we were suggesting.
So I produced a behemoth of a report. It was 70+ pages long, and it basically took everything where the average was a '4' or better in importance (of 5) and discussed what it was (because who but ME patients even know what 'The Vagus Nerve Hypothesis' even means). Then, it included citations and quotes for evidence of why it was important. Then, it paired the ideas for research (or problems) with suggestions (in the form of 'what the community thinks are good solutions' section of the survey). You'd be surprised how easily these slotted together even though they were in different sections of the survey. [Edit: then, I paired all of this with patient comments that were applicable in their own section; then, there was a Key Points section at the end of each that summarized all of this.]
In the case of 'accurate definitions' that meant consulting epidemiological studies and statistical studies that show the direct harm in calling what is probably many diseases the same thing, or in conflating the research definitions with one another, or actively proving the uselessness of the Fukuda criteria. Organization of the report was a challenge, and I ended up putting it into three main sections and papering my living room floor with quotations and papers etc.
When I handed to #MEAction they understandably said WHUT because the NIH was probably getting a million reports and they ain't gonna read this. So other members of #MEAction cut my behemoth down to a few pages -- I'm still not quite sure how!
So my own work wasn't wasted, I tweaked the language of my report so that it was decoupled from #MEAction's stance and branding. I generally agreed with the patient community, but I added a few things that were my opinion alone, and some suggestions that were more colored with my own perspective, and sent it in as an individual, with the addendum to Vicky that I AM AN INDIVIDUAL THIS IS MY REPORT NOT ANYBODY ELSE'S OPINION etc so that there was no question that I was submitting not as #MEAction.
My goal is to produce a short report of our survey's findings and begin to post as articles on #MEAction next week.
Writing the obit article destroyed me (will be out at 4pm ET). I think I'm going to sleep soon, but please let me know if you have any additional questions if you can ask them in the next half hour or so.
[Edit: this is by way of saying that so far as I know, I will be publishing the survey results themselves]
