ACOR CLL List Rules and Etiquette

List Rules and Etiquette

This discussion list is for patients, caregivers, family, friends, researchers, and physicians, to discuss clinical
and nonclinical issues and advances pertaining to Chronic Lymphocytic Leukemia. It includes patient
experiences, psychosocial issues, new research, clinical trials, and discussions of current treatment practices
and alternatives. The principal focus is expected to be information and reassurance for patients and loved
ones. This List is entirely free, is unmoderated (not subject to pre-review), and is managed completely by
volunteers.

This letter explains the rules you are expected to follow during your membership. These rules are also
available in more detail on the web at http://www.acor.org/faqs/lists/listrules.html.

RULES FOR THE CLL LIST

We want this CLL list to be a place where people are free to express their concerns, and share information
and support. But we also want the lists to be SPAM-FREE, to stay within the bounds of the law, and to be
civil. We also want to protect your privacy to the degree we can. The six rules that follow have been
developed toward those ends.

If you have any doubt about whether a posting would break the rules, please write to the list managers
before you post. They may always be reached at CLL-request@listserv.acor.org.

A QUICK SUMMARY OF THE RULES

* Commercial Postings are STRICTLY PROHIBITED
* The lists are for Patients, Their Supporters, and Allied Professionals
* Respect Copyright
* Don't Post Chain Letters, Virus Warnings, or Other Off Topic Material
* Be Civil and Avoid Libellous Postings
* Respect Religious and Political Diversity

THE RULES IN DETAIL

RULE #1: Commercial Postings are STRICTLY PROHIBITED

If you have something to sell, you are very definitely in the wrong place. Anyone posting
advertisements to this list will be deleted immediately and without warning. In addition, we
may request that your ISP terminate your account for wilful abuse, and if we think you are
making unsupported claims of a cancer cure we may register a complaint with both the
Federal Trade Commission, and the Food and Drug Administration.

RULE #2: Postings soliciting participation in surveys, questionnaires, or other research purposes and for
charities are STRICTLY PROHIBITED without prior permission of the list managers.

The ACOR lists are primarily for cancer patients, their supporters and loved ones, and health
professionals who wish to lend their support and knowledge. If you are subscribing to the list
for any other purpose, please contact the list managers PRIOR TO POSTING ANY MESSAGE
or beginning any research project.

This includes people who want to post a survey or questionnaire of any sort, or who want to
post an announcement for a charity, or who wish to archive or redistribute the contents of any
ACOR list. We also request that anyone observing our list for research purposes contact us.
Attorneys researching cases, or looking for clients are not permitted on any ACOR list.
Anyone else who is not a cancer patient, supporter or health professional should contact us at
the above address. Requests will be considered on a case by case basis.

RULE #3: Respect Copyright

Posting of copyrighted material to the list without permission of the copyright holder may be
an infringement of copyright, and could subject you to civil penalties including fines.

In these days of better access to research studies and reports, the preferred method is to post
the internet URL or the citation of the relevant journal or newspaper article with a brief
summary in your own words or a short quotation to illustrate a point. Medline abstracts, press
releases, and similar are usually acceptable.

If you are in doubt, check with the list managers at CLL-request@listserv.acor.org. However,
the list managers are not copyright attorneys and cannot give you legal advice as to what
might be a copyright violation. They can give you their best layman's guidance, but they can't
give you a guarantee. If you are still in doubt, don't post it.

RULE #4: Do not Post Chain Letters, Virus Warnings, or Other Off Topic Material

By a chain letter we mean any message which asks you to forward it on to others. Internet
messages like this acquire a life of their own even though it turns out they are usually hoaxes
or scams. Typical examples include warnings about computer viruses, or claims that you can
help a charity by going to a certain web site, or claims that there is to be a tax on e-mail. Some
places where you can check on the status of various hoaxes and virus warnings are:
http://www.breakthechain.org/, http://www.vmyths.com/, http://hoaxbusters.ciac.org/,
http://urbanlegends.com/, and http://www.symantec.com/index.jsp.

If still in doubt check it on a search engine like Google, and if you still think it should be posted
check with the list mangers first.

RULE #5: Be Civil and Avoid Libellous Postings

Fortunately we have had very little in the way of personal antagonism on our lists. On the
whole we are extremely supportive of each other. At the same time with over 2500 members
disagreements and occasional friction are inevitable. It's perfectly OK to disagree with
someone, but it's important to keep the tone civil. No flame wars. If you are writing an angry
post stop and ask yourself if you could make your point in a calm way before you press
'send'. Leave your message for a few minutes or even for a day and do something else. Then
come back and read what you've written. If you think that someone has criticized you, keep in
mind that our words don't always come out exactly the way we meant them to, and
occasional misunderstandings are possible even when no criticism is intended. This is
especially true on the Internet where you can't see the person's face and hear their tone of
voice.

Do not post potentially libellous comments about anyone. It is fundamental for everyone to
understand that because neither ACOR nor the list managers moderate the CLL list, its
content is only composed of personal opinions that may or may not contain inaccuracies or
misleading claims that can have direct, negative effects on human health. To put it simply,
everything posted on this list is personal opinion--often very valuable opinions--but still
opinions. Thus any potentially libellous remarks about another party can bring a lawsuit, not
against ACOR or the list managers, but against the writer.

RULE #6: Respect Religious and Political Diversity

Religion is a delicate topic. Faith is very important to many, especially during a life crisis like
cancer. No matter how strong your personal faith, it's important to realize we have a great
diversity of religious beliefs among our members, and that not everyone shares your faith,
whatever that might be. Many people will be offended by posts which preach to them, or
which assume that they believe in the same God you do. Don't post messages which advise
people to pray, or tell them that they will be helped by a particular religion or even by religion
in general. Anything which might be considered proselytizing should be avoided. At the same
time asking people to pray for you, or expressing how your faith has helped you should be
fine. Sometimes it's a very fine line - use your best judgment. If disagreement occurs on the list
regarding this topic, we ask that those involved in the disagreement take their discussions off-
list.

Politics is generally off topic and not an appropriate subject for the list. Occasionally a
legislative bill touches directly on cancer, and in this case, careful discussion in your own words
would be appropriate. If you do post on a political issue, avoid blatantly partisan rhetoric.
Because this is an international list, discussion of the legislative or regulatory issues of any one
nation should be identified as such as a courtesy to those not affected. Again, please use your
best judgment. Forwarding calls to action relating to political causes that you've gotten from
someone else falls under Rule #4, above, on chain letters. Please don't.

AGAIN, IN SUMMARY

And if you have any questions about these rules, please contact the List Managers at CLL-
request@listserv.acor.org.

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