Who would think this discussion board is only about five months old? It is really growing by leaps and bounds ... thanks to people like you who are willing to draw on their limited reservoir of strength, to overcome their natural retinence to "violate" their privacy, and share, share, and share in the interest of public good (pro bono publico!)
This has really done it! It has pushed me over the "fence", actually the obstacle of my own natural resistance against hard work.
I have been thinking. Actually someone else came up with a similar idea. To make a survey among us. This sounded like a good idea- because it implied the harvesting the fruits of this highly capable group and organizing the information collected through a survey!!!
So to get off the ground, I am starting this new topic entitled OUR RESEARCH PROJECT, or ORP for short, in the forum of General Topics. Please read it and, if you think the idea is any good, please contribute to the first step which I will describe there.
What I have in mind is to make a well designed questionnaire on this discussion board concerning RLS/PLMD. The emphasis is on "well designed." I could start on that but I am not ready yet so I definitely need your help now.
So as step #1 I would like to request everybody (even the lurkers) to contribute to this thread (please make sure it is to this thread, so it is easier to find) with ANY idea that occurs to you. Absolutely anything that occurs to you even if you have doubts as to its value. I was taught early in my research career that new ideas have to be treated gently and not exposed to the scrutiny of others because they are vulnerable at that stage. So do not even criticize your own ideas, just send them in.
If you are of the bashful type or just want to preserve your privacy, use a handle, anonymus + a number, but please give your gender and age (e.g. M/69)
Now once all of your ideas are in (it could come in as a fragment of a debate by several people) then somebody (I am volunteering ) should use this information to make a questionnaire. Then expose it to public scrutiny for critique, additional suggestions, vetoing, clarifying, what have you.
One we have the questionnaire as polished and utilistic as we can make it then it will be posted in an easy to answer form. And then hoping that as many people as possible will return it.
Then again somebody (I am still volunteering ) will compile the results and look for possible conclusions that can be made on the basis of information thereby collected.
So the stages:
#1 Comments, preliminary ideas, suggestions, whatever. All to this thread or to my e-mail address: email@example.com.
#2 Construction and composition of a tentative questionnaire. Exposure to your critique and further suggestions.
#3. Improvement of the tentative questionnaire. Then "publishing it" in an "easy to answer" form. Also a flexible form so odd fragments of information can still be included.
#4. Evaluation of the survey. Possible conclusions, questions, suggestions for future research, etc. This could be written up and disseminated in one way or another (even at the Fall meeting of RLS )
I think considering the excellent, highly interactive group we have as a seed here, this could become a valuable piece of work and could even be publishable.
If somebody else would like to take over at this point or would like to be nominated to be the project leader, please speak up and we should do what is best for the project (egos are out during this effort).
Please also let me know that I am all wet, it will never fly, etc., etc. I will listen but I have to be convinced!
P.S. I really think something valuable can come out of such an effort because, with this affliction, the patients are the most knowledgable as far as the symptoms, effectiveness of treatment, morbidity, and recognition of booby traps are concerned. It is our skin afterall!