Posted by Enrique Geiger (22.214.171.124) on July 31, 2000 at 10:01:21:
In Reply to: Enrique... posted by Bennie Sue on July 30, 2000 at 13:22:03:
The easiest solution is to make the list a positive one by identifying those doctors who people have found responsive and helpful for CH. It is simply the right thing to do to help those struggling to find help and being frustrated and spending lots of $$$ to give the benefit of other people's good experiences.
Since your questionaire already contains the relevant questions about MDs', all that is needed is to add an identifier question/field.
Later, you can analyze results and decide on a course of action, depending on the results. That means that you have control of the data, and can publish separately different sets of the data, in different formats, so as not to alienate whomever you want to avoid alienating. But please don't let the opportunity of getting this valuable data slip. Asking who it was that took care of you so wonderfully will not alienate anybody.
If alienating MDs' (I don't say that this is the case) would have saved me more than $30.000, horrendous grief and pain, etc., then are you telling me that you prefer not to have saved me more than $30.000, horrendous grief and pain, etc., so as not to alienate some MDs'? In that case you would certainly alienate me, a CH sufferer.
Again, I don't think that anybody has to be alienated, but if it stands between alienating MDs' whom we should avoid to begin with, I would tilt the scale in favor of CH sufferers. We need all the help and silk gloves, not the MDs'. They are doing fine, thank you, with the money they got from us. We are not doing so well as a consequence of them.
You state "I do not believe intentional bad treatment or lack of treatment are rampant today."
That is not so, judging from all the postings here and in other sites, or from the fact that you have to go through about 6 MDs' to get a correct diagnosis, and perhaps many more to get an effective treatment.
Please separate the questionaire from what you will do with the results. Asking the question adds enourmous value to the questionaire and will serve me, as a CH sufferer much more.
The URL that I provided was in order to show that this can be accomplished, and to give a sample that may inspire you to do better. If you doubt the numbers (You write in your post "in some cases their reporting may not be strictly factual" published in that URL, then by all means, the sources are available to all, and you can check those numbers, and that is the reason we seem to have alienated only one MD, of which I know, and it seems that the general response of MDs' was to be more carefull in reporting, wich is positive. In fact we got a very good review from the NY Times, which I can email you, upon your request.
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