Also see the more general ACOR rules and guidelines.
Medical information posted on the list
Be aware that medical information posted to the list by listmembers may or may not be the best and most accurate information available. Treatment plans for a particular type of ALL, what to do when a particular side effect or symptom is seen in a child, what a child should be allowed to do or eat during treatment, complementary treatments, etc. are often discussed in the list. Always check with your health care professionals to make sure that any changes you want to make in your child's treatment are appropriate for his/her particular situation, or if something that you have read in the list has given you concerns about your child's protocol.
If you are posting specific information about, for instance, results of a particular type of treatment for ALL, you should state your source, e.g., cite a journal article. (But do not copy in the entire article, see copyright issues, below.) That way, if another member wants to talk to their doctor about the information, they can take the journal article to their doctor. Also, it adds validity to what you are saying.
ALL-kids is not a moderated list. This means that all members are able to send a post directly to the list (in a moderated list, all posts are pre-approved by a moderator before they can be posted to the list). The administrator of the list (with the help of alert members) strives to read all the posts and make sure that the information posted is accurate, however, ACOR list administrators give no guarantee that only correct information is posted to ACOR lists. We try, but we are not perfect and we often don't have the time to check every reference. It is up to each member to make sure that whatever they post is substantiated either in the medical literature or is accurately reproduced from information heard from a medical professional. If you are not sure, state clearly that the information is your opinion, or that it is correct to the best of your knowledge.
Joining the list as a researcher
Attention: To potential members that are not a family member, friend, or caregiver of a child with Acute Lymphoblastic Leukemia:
This list is primarily for support for families and caregivers of children with Acute Lymphoblastic Leukemia. If you are subscribing to the list for any other purpose, please contact the listowners. This includes anyone observing our list for research purposes. If you want to post any message about a research project or a survey or questionnaire, you must contact the listowners first. Requests will be considered on a case by case basis. If you post or transmit any request to participate in studies without the prior approval of the listowners, you will immediately be unsubscribed from this list, and perhaps from all ACOR lists.
Advertising items for sale is not allowed on the list.
The use of ALL-KIDS for any commercial purpose is expressly forbidden. Anyone posting advertisements for products or services of any kind to this list will be deleted immediately and without warning.
Soliciting for charities is not appropriate:
The non-advertising policy also includes soliciting funds for a charity, even members doing a fundraiser for childhood cancer. It is appropriate to talk about your participation in a fundraiser, and members will naturally understand that they can donate; it is not appropriate to post an outright advertisement for donations. There are just too many nice people here who will go broke trying to accommodate every ones' wishes.
Please don't solicit cards, money, gifts etc. from the list. It is natural and appropriate to send cards etc. to a member, and as long as the gifts are not solicited, it's appropriate to send them. Remember to keep the recipient's mailing address private - do not post mailing addresses or phone numbers to the list.
You may not use an ACOR list to gather data such as e-mail addresses or personal information about listmembers for any reason (this is known as "listmining"). Do not use members' addresses to market any service, product, or treatment.
The following was written by Steve Dunn for a different ACOR list: the Kidney-Onc list (KO faqs). It is an excellent explanation of online copyright policy, and he gave permission for it to be used on this ALL-kids guidelines page.
"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 of tens of thousands of dollars. Please don't post copyrighted material to the list! Although we want to obey the law, we definitely don't want to discourage sharing of information which can save lives. We also believe that sharing of vital information is possible within the laws of copyright!
Your listowners are not copyright attorneys and cannot give you legal advice as to what might be a copyright violation. We can give you our best layman's guidance, but we can't give you a guarantee! If you are in doubt, don't post. So here's the scoop (as we see it)
In general, anything that anyone writes is automatically copyrighted by them, even if there is no copyright notice. So in general don't post anything written by someone else! There are some exceptions.
Things which are always OK to post include:
- Anything you write yourself, including a summary of a copyrighted work.
- The URL of any page on the Internet (post the URL, not the content of the page!).
- A reference to any paper in the medical literature.
- Quoting a message someone else posted to the list.
- Anything which you have permission of the copyright holder to post.
Things which may be OK to post (and to which the listowners won't object) include:
- Medline Abstracts
- Short quotations from copyrighted material to illustrate a point.
- Press releases or other material clearly intended to be distributed - but remember advertising is not allowed! Only post PR material if you have absolutely no interest or involvement, and are completely sure it's relevant!
Things which are not OK to post without permission include:
- News articles and other copyrighted material from web sites, newspapers and the like
- Private correspondence
Under US copyright law, all messages posted by ALL-KIDS members are automatically copyrighted by the author. No copyright notice is needed! Members of our list expect that their postings and the personal details they reveal are shared with the list, not with the whole world, and not with people who are not members of the list. Therefore, you must not re-post messages to any other forum, such as another list, a chat group, a bulletin board, or to any web site, unless you get permission of the author. If you do re-post a ALL-KIDS message anywhere else, please state that you have obtained the appropriate permission."
Copyright addendum: sharing posts to the ALL-KIDS list with other people
You may not forward list posts to non-members or use them for any purpose without the permission of the writer. You should also get permission from the author to email or to print and share a copy of a ALL-KIDS message to anyone who is not a member of the list. Two exceptions: It's OK to share messages with others who are immediately involved with your situation, and it's also OK to share old messages with current members of the list, since any list member may search the archives and thus has access to these messages already.
Strive to keep list volume low ("Respect Bandwidth")
Lists with large email volumes are difficult for some subscribers to handle. People who subscribe to the digest, people who pay for online time by the minute, and people who are simply quite busy are especially effected. List courtesy directs that subscribers work to lessen both the number and the size of posts. Also help readers use their time wisely by keeping to topics and subjects. Below are some suggestions to help lower list volume.
- Posts of general interest go on the list, and an email that is really only of interest to one or two list members should go to these individuals off list. This is not a hard and fast rule at all in ALL-KIDS. The wonderful sense of community of ALL-KIDS comes from people disobeying this rule. If no one ever answered other people in-group, and if people only posted to give information, we would have no way to get to know each other and care for each other. However, if a message is truly only meant for one person, respond by private message. New members do not always realize that not only is it perfectly okay to respond privately, but that members are encouraged to respond by personal email whenever appropriate (and/or whenever they remember). It's amazing how much communication goes on off list.
- If you respond to an ALL-KIDS post by hitting the "reply" in your email program, the reply (usually) goes to the entire list by default. If you have a personal response, you will have to copy the sender's email address into a new message.
- Keep to the subject in the subject line. Make sure that your email discusses something relevant to the topic in the subject line. Keeping to the subject is good both for you and for others. Sometimes in a thread, by the end, the content of the emails has nothing to do with the subject. People often scan the subjects to see what they want to read. It's irritating to expect to read one thing in a post and find that the subject has changed, and people will miss reading important information if they only read posts when according to the subject and information they need is in the un-related email content.
- Only copy the pertinent part of someone else's post in your response. If you include the whole email to which you are responding in your response to the list, it bulks up the list. In digest, this is particularly noticeable. For instance, sometimes people will include the entire original message at the top and only after cursing down does the reader find a tiny little response "thinking of you". Instead, clip a few pertinent sentences from the original post and add your message beneath it.
- Keep off-topic posts to a minimum.
- Bundle many small posts into one. If you want to say "way to go and congrats" to five people, do so in one post, which we call "bundling."
A daily list threshold of 150 posts is set into the list software. This should never affect anyone, since the average heavy poster in the group averages 2-3 posts per day. If you routinely post more than 5 times per day, you are probably posting too often.
Religion and the list
Don't bring religious beliefs to this list. ACOR is non-denominational. List-members come from many different countries and religions. Some members are agnostic or atheist. What seems very right to one group regarding religious comments in posts, may be downright offensive to another group. What seems an innocuous statement of faith to you, may be extremely inappropriate to someone else. We strongly suggest, therefore, that all statements that may be taken as doctrinaire be eliminated from your posts.
General discussions of meditation and spirituality as coping mechanisms are okay; proselytizing for any religion or philosophy are not appropriate. It is appropriate to say "I am praying for you" while it is not appropriate to say "trust in God and you will be fine." Non-religious people can interpret "praying" as mediation or sending good thoughts; telling someone to trust in God when they do not believe in one is proselytizing. Please do not solicit prayers on the list, this is not a prayer group, it is a support group for parents of children with cancer.
"Freedom of expression also means freedom from expression of something that may be unwelcome to another listmember. Please take that into consideration when you post."
Religious issues are not unique to the ALL-kids list. The following is re-printed with the permission of Steve Dunn from another ACOR list:
"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 you wish to share religious experiences and information regarding cancer, you might like to join the FAITH list (to discuss how religious beliefs help them through treatment) or the CPCOS list (Christians) or the JP-NET (Jewish faith). (Information on how to join these lists.)
Be kind to one another. Most lists go through periodic convulsions, but the ALL-KIDS list has, for years, been the nicest bunch of people. Just in case things change in the future, remember that it is perfectly okay to disagree with someone, but it's important to keep the tone civil. If you begin writing an angry post to the list, stop and ask yourself if you could make your point in a calm way before you press 'send'. On the Internet, where you can't see the person's face and hear their tone of voice, you might think that someone has criticized you, but 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.
Be aware that your posts are not private. Never post your home address or phone number to the list. The above goes two ways. You should not post the email, address, or phone number of someone who is off-list to the list. If you want to transmit such information, please do it via private emails. With over 500 members and the archives available through ACOR, you just don't know who will be reading your posts. ALL-KIDS is such a friendly group, it's tempting the think that you're chatting over the back fence or in your living room, when you're really sending a message around the world.
If you attach pictures or anything else to your posts to the lists, the post and the attachment will not be sent to the list. The list software will not accept attachments. Attachments received and sent out many times overburdens the servers; attachments also can carry viruses. Therefore, the list has a 150 line limit to prevent these problems, and this limit also prevents attachments. Please note that if you send a text-only post which is over 150 lines, it too will be rejected by the list software.
Don't forward chain letters to the list. A chain letter is any message which asks you to forward it on to others. Typical examples include warnings about computer viruses, or claims that you can help a charity by going to a certain web site. Hoaxes, virus warnings, spam of any type, including sales, chain letters and donation requests, will not be tolerated on all-kids. Even in the rare case where one of these letters is actually accurate, they are off topic. If you receive something and are not sure if it is valid or not, check here:
- Break The Chain
- Computer Virus Hoax Page
- VMyths Virus Myths Page
Don't criticize others medical or other choices. We each have to find out own way.
Don't post stuff about alternative medicine unless you include citations to the scientific lit to support it.
Don't post stuff about kids and families who aren't on the list. It can get pretty overwhelming for new families to hear about kids we don't know who are not doing well.
If you want to talk about how much you hate a doctor or facility, please state your side of the story but NOT the name of the doctor or facility in your posts (you can do so via private email, though). A few reasons for this. One, the doctor/facility does not know that you are criticizing them and cannot defend themselves. Two, other people going to the same facility/doctor may read the post and be happy with their doctors, and reading your post might make them lose confidence in their doctors needlessly. Three, remember that the lists are archived, and you never know who might be reading them in the future and what might be the motives of that person.
Below is a link to follow on "netiquette" written by other people out there in cyberspace.
And here is a link to emoticons and stuff: