A procedural issue from

[Guest guest]

Hi Folks - I'll probably lose half the membership, but this has been bothering me for a long while and I need to express a sort of "ground rule".

This group was established a number of years ago (with a slightly different name, until we got hacked), after Venkat shut down her discussion group. I thought that this was a loss to the CLL community, and started this group, knowing that there was already a Granny Barb list, in an effort to at least partly fill the void left behind by . The CLLTopics discussion group was a medically informative, sometimes quite controversial, but always informative group. One could learn a great deal there by following the exchanges between patients.

Further, our mission statement identifies us as a "medical information exchange group", not a patient support group.

Nor are we a group set up for medical consultation. We have been more than fortunate in that Dr. Furman, notwithstanding his insanely busy schedule (a few weeks ago he told me that he got home at 2AM), has been kind and patient to deal with a lot of questions.

So, I would like to introduce two "soft", not necessarily "ironclad", rules.

#1 - Please try to minimize your one-on-one communications with Dr. Furman. Post your questions for all of us to see (some of us are not stupid and quite experienced). By all means, express your wish to hear from our medical advisor. But try to limit the "dear Dr. Furman" posts. It is not the concept of a discussion group, and it is a burden to him. If he has a contribution to make, you can be sure that you will hear from him. That's the kind of guy he is.

#2 - Please try to limit "we are thinking of you", "our wishes are with you", "I hope your uncle Fred is feeling better", etc. e-mails. We all know that we are cheering for each other. We all know that we wish each other success in treatments. If you have someone whose treatment you have been following, and to whom you wish to express your thoughts, by all means do so off-line, direct to their e-mail. (Which you can see from their previous post....) There is no need for over 500 people to read that A wishes B well. (Obviously, if your message contains medical advice, suggestions, your own experience with a treatment, anything like that, this would be of significance to all of us.)

I hope that you will all understand. I am ducking my head against all the "nastygrams" I am sure to receive. I will probably not answer them, as I do not want to enter into arguments about this. I also hope that not too many will be so upset as to leave us. Really, nothing needs to change, procedurally. Everything we stand for will still be accomplished. We are still one of the foremost CLL/SLL medical knowledge exchange groups on the web. All we're doing is cranking in a couple of procedural modifications, to try to limit what I perceive as some excesses, and trends contrary to the original concept of this group.

I hope to see many of you in San Francisco in September. There will be two CLL sessions at the LRF seminar, as well as a short meeting of the CLL Info Group. By the way, CIG and the LRF are involved in publishing the first NHL disease specific booklet I know of, on CLL. Although I doubt that it will be available by the end of September, it should not be much later.

With best wishes for all of you,

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