as of Nov. 16, 1999
The next scheduled steps for improving the CFS-L group are as follows:
a "Welcome Wagon" program will be created wherein newcomers to the group will be greeted by volunteers who will offer advice to them; scheduled for mid-November
new topics of ALT and COPE will be created by early December; but first there will be a public discussion under ADMIN and various details need to be worked out;
there may possibly be an additional discussion group created that will have no topic keywords. This will be discussed from now through the beginning of the year 2000.
Below is the results of the readers' survey of Nov. 8, 1999, followed by a description of next steps that the Moderator Team will be taking. Survey Report
Please note: no formal monitoring system can be perfect. If *you* see a problem or a rule violation in the group, please alert the moderators yourself by contacting them at cfs-l-request@maelstrom.stjohns.edu .
Summary results and Next Steps
We had 113 responses to our survey. A clear majority favored the creation of both the ALT and COPE/Support topics. Both will be created, however additional details will need to be worked out before these topics are installed by the moderators. Several other important ideas also came from the survey which will help in improving the group in the near future.Several people have suggested that there be a program to welcome and advise newcomers when they first join the group. Such a "Welcome Wagon" program is being set up now, and should be installed when our new volunteers are in place in a week or so. Part of the program will likely involve creating a new topic where newcomers' questions can be answered.
The ALT and COPE topics will be installed after a bit more discussion about their specifics. An announcement will be posted to the reserved ALL: topic when they are ready for use, but preceding that there will be public discussions under the ADMIN topic. For one thing, both categories will need to be defined more clearly as to what exactly belongs in them. And it has been noted that the ALT category will need special protections, since these issues have been particularly subject to heated arguments in the past. It will also need regular cautions, as does MED:, about the importance of not taking advice on face value since any treatment may have serious consequences that are not understood. And that commercial sales will not be allowed.
We are also considering creating a companion group to CFS-L that will be the same as the original group expect that it will have no topics. That idea will require much discussion before it might be implemented.
In sum, we will be implementing the Welcome Wagon program with its new topic in about a week, we will install the new topics of ALT and COPE (after further public discussion) in perhaps two to three weeks, and the proposal for a topicless companion group will be discussed through the beginning of the coming year.
Survey results
The ALTernative medicine topic was supported by 86 respondents (76.0%), although seven (6.2%) opposed the idea. Two of those seven generally disapproved of alternative medicine. Another two thought that alternative medicine is so important that it should stay within the MED: topic. Two others thought that creating any new topics would add confusion, and the remaining respondent gave no reason for their opposition. The support for the ALT topic was not only greater than that for the COPE topic by straight numbers, but also by the intensity of many who expressed support for it.It has been suggested that there be a regular notice that will point out the general dangers of any treatment advice found on the Internet and that every should always consult a licensed health care practitioner before implementing advice. The moderators are considering creating such a notice.
The line between what belongs in ALT versus what belongs in MED may be hard to define and put into practice. One policy being considered is that that boundary might not be considered so important, rather what distinguishes the ALT group may be its extra protections about discussing those issues.
The COPE topic was supported by 72 respondents (63.7%) and opposed by 4 people (3.5%) who thought we have more than enough topics already.
Some have suggested that coping issues seem to be already covered by the CHAT: and OTHER (no keyword) topics. Actually, CHAT: allows for non-CFS posts (talk about sports or pets) which COPE would not. And OTHER allows for many other issues to be discussed. Those who are looking for a focused discussion solely on coping issues will not find it now in CHAT or OTHER.
The name of the new topic will likely be COPE. Many people found the original suggested name SUPPORT to be too broad. And since topic keywords should be as short as possible, COPE will likely be better than "coping". But this is all still subject to public discussion within the ADMIN topic.
Several have suggested that there be a separate topic for discussing disability insurance. However, there is a separate group called DISINISSUES for CFS patients that already covers that subject well.
A perpetual problem for CFS-L is that many ill readers need to have messages arranged by topic, otherwise they are too difficult to find, while on the other hand many ill message-posters find any topic requirement to be too harsh. The moderators are then pressured by both sides to have a system that implements the needs of one side more so than the other, and sometimes the moderators are blamed for not having a perfect system. Sadly, as long as this illness exists there may be no perfect solution to this dilemma.
Several have noted that subject drift remains an important problem, and that many threads drift far from what their Subject: lines indicate, or even what topic keyword they are being posted to.
There were complaints about general chit-chat that has been posted outside of the CHAT: topic. This situation can be helped if more people will volunteer to be monitors, and if the average reader regularly reports these and other problems to the Moderator Team. The problem may be lessened if we implement a new topicless companion group to CFS-L.
A few have requested that activism posts be allowed on CFS-L, however past experience has shown this to be very disruptive to the group. That is why the separate CFIDS-L group was created for activist discussion.
Some would like to see a campaign created to help legitimize CFS among non-believers in the general public. This is the kind of project that should be developed within the CFIDS-L activist discussion group.
A proposal has been made that there be some kind of buddy system created within CFS-L for personal security, so that PWCs who may be out of touch for too long may be contacted, or have local authorities asked to check the person, to make sure they are all right. This suggestion will be discussed to see if it is practical to implement.
Someone requested that information should be developed for doctors who are preparing documentation in support of disability claims. It is important that this be done, however the CFS volunteer team is burdened with its own work of managing this group, and it is not clear who should be taking up this responsibility. Perhaps it should be taken up in the DISINISSUES group.
A request was made that the number and length of the FAQs posted through the newsgroup be reduced. That request will be considered.
Some have noted that they were unaware of how public the CFS-L group is. This should be clarified for future newcomers through the new Welcome Wagon program.
Future updates will be posted to the reserved ALL: topic and may also be seen on this web page. See also the main CFS-L web page.