Download PDF Instruction Guides:
- How to subscribe to IWMF-Talk
- How to use the IWMF-Talk Archives
- How to manage your IWMF-Talk Subscription
- Rules and Guidelines to Follow When Posting Messages to IWMF-TALK
IWMF-Talk is an e-mail discussion list where all matters regarding Waldenstrom’s macroglobulinemia (WM) are discussed among patients and caregivers. Discussion focuses specifically on diagnosis, distinction, treatments, research, prognosis, side effects and related conditions specific to WM. In addition, important information is conveyed about patient advocacy, outreach to doctors, concerns of the newly diagnosed, the Foundation and its research programs, forums, and educational activities. If you would like to join the discussion list, please follow the instructions in QUICK LINKS #1 above or send an e-mail to our IWMF-Talk manager, Peter DeNardis at .
Members post their message or question to IWMF-Talk, and that message is then automatically distributed to all participants via e-mail within minutes or, when the systems are busy, within hours. Members can reply to the e-mail originator or to the entire list. There are typically 20-30 messages per day, all on topics directly related to WM.
People are often reluctant to join Internet talk groups because of exposure to computer viruses and worms and because they do not want their e-mail addresses used by spammers, slammers, and other nefarious marketers. We very closely monitor and control our lists, prevent contamination by not allowing attachments, and never, ever, allow any person or organization access to our lists of e-mail addresses.
Because of this protection policy, you must become a subscriber in order to receive or write to IWMF-Talk. You may use any e-mail address you wish, and you may communicate with any name, real or fictitious, but you must use your real name to subscribe. Your real name is protected and not revealed by us. However, this community is so sharing and caring, and there have been so few concerns, that most of us use our real names. It’s your choice.
Discussion list contents reflect the views of individual participants only. Information provided on this discussion list cannot be used for the purpose of diagnosis, providing medical treatment, making medical decisions, or as a substitute for professional medical advice. The IWMF recommends that all medical care and treatment decisions be discussed with a patient’s physician or health care professional that is familiar with the patient’s specific health conditions. The IWMF bears no responsibility for accuracy of participant comments and will bear no legal liability for discussion results. Under no circumstances will the IWMF be liable to a discussion list participant or anyone else for any decision made or action taken based on the information provided on the discussion list.
Rules and guidelines:
- YOUR POSTINGS REFLECT UPON YOU AND MAY BE THE ONLY WAY SOME PEOPLE KNOW YOU. Most people will only know you by what you say to the group and how well you say it. Take some time to make sure each posting won't embarrass you now or later. Your posting will remain in the message archives and could continue to haunt you in the future. Minimize your spelling errors and make sure that the message is easy to read and to understand..
- BE MINDFUL OF KEEPING TO THE FOCUS OF IWMF-TALK. (no political or religions discussions) Keep messages related to WM, diagnosis, treatment, results, or tests. This also means NO politics, NO religion, etc. Abuse of this rule will result in your subscription being put on reivew and removal if it becomenecessary. However, this does not mean that one cannot offer to pray on another member's behalf. Usually, such a message is more of a private message meant for just that person; but, in situations where it is part of a much larger message to be shared with everyone, then mentioning prayer is appropriate. Praying for someone is not discussing religion - it is an offering of support. Just remember, discussing things like religion and politics inevitably leads to rancorous communications and flame wars and simply cannot be allowed.
- BE BRIEF.
Say what you have to say succinctly and it will have a greater impact. Remember that the longer you make your message, the less likely it is that people will bother to read it.
- USE DESCRIPTIVE SUBJECT LINES.
The subject line of an message enables people to decide whether or not to read your message. Tell people what the message is about before they read it. Don't expect people to read your message to find out what it's about, many won't bother. Some e-mail programs limit the length of the subject line that is visible, so keep your subjects short and to the point.
- WHEN CHANGING THE SUBJECT, CHANGE THE SUBJECT LINE.
Often, people will begin a post by selecting a prior message from the group and clicking the reply button on their e-mail program. This results in a new message to the group, but the subject line from the prior message (and often the text of the prior message) is carried into the new message. If your intent instead was to change the subject, this is confusing to the message recipients and also interferes with the proper threading of the message in the message archive. Please make sure your subject line accurately reflects the content of the message.
- BE CAREFUL WITH HUMOR AND SARCASM.
Without the benefit of voice inflection and body language, it is easy for remarks meant to be funny to be misinterpreted. Subtle humor can easily get lost and the intended meaning of the message can be perceived to be something offensive through misinterpretation. Also, remember that the members of the list are all very busy. If the only point of a reply is to be humorous, refrain from posting it in the interest of not wasting the collective time of the group members.
- WHEN REPLYING TO A MESSAGE, SUMMARIZE WHAT YOU ARE REPLYING TO.
When you reply to someone's message, summarize the parts of the message to which you are responding. This allows readers to quickly place your comments in context and eliminates the need for them to try to find the original message or remember what the original message said. The easiest way to summarize is to including the text of the original message, which most e-mail programs will allow you to do automatically. However, if you are replying to a long message with multiple points, don't include the entire message. Take the time to edit the text of the original to retain the salient points to which you are responding and also keep your own email short. If you receive IWMF-TALK messages in a digest format, please DO NOT hit reply to respond to a particular message in your digest - this will automatically place the subject heading of IWMF-TALK Digest (which is not of much use to anyone) and will include the entire digest in your email! Be sure to create a new email, address it to , and include only the lines that are pertinent to your response.
- DON'T REPEAT WHAT HAS ALREADY BEEN SAID IN POSTED REPLY MESSAGES.
Before you submit a reply to a message, read the rest of the messages posted to the group to see whether someone has already said what you want to say. If someone has, don't repeat it. This saves everyone's time. Also, unless a message is polling the group on some question, avoid posting replies simply stating "I agree" or "Me too." These responses do not advance the discussion and require each group member to review the message. Again, please refrain from such postings in the interest of not wasting the collective time of the group members.
- WHEN APPROPRIATE, REPLY USING DIRECT E-MAIL INSTEAD OF POSTING A REPLY TO THE GROUP.
If your response to a post is only relevant to the poster, respond by direct e-mail to the poster rather than by replying to the group. This reduces the amount of e-mail group members have to sort through.
- WHEN APPROPRIATE, POST A REPLY TO THE ENTIRE GROUP.
Sometimes a fellow list member will ask for information or experiences others have had with a particular treatment regimen, WM symptom, etc. Your response to such a request will be a judgment call on your part. If you feel that your response is personal in nature, or you do not wish to publicize your experiences to everyone, then just respond directly to the poster. However, if the information you provide could be of benefit to everyone - post your reply to the entire group. For example, from past discussion list experience, it has become evident that everyone in the group would like to read about experiences with different types of treatment regimens.
- BE COURTEOUS AND PROFESSIONAL IN YOUR PARTICIPATION IN THE DISCUSSION GROUP.
Don't forget that you are interacting with people, not a computer. Because your interaction with the group is through a computer, it is easy to forget that there are people on the other side of the messages and replies that you post. Don't attack people. Conduct a calm and reasoned discussion based on relevant facts. Cursing and abusive language is inappropriate. Such conduct causes a discussion to deteriorate and makes people less willing to help you when you need it. Repeated incidents of abusive conduct may also get you involuntarily removed from the group. Inappropriate personal attacks also reflect poorly on you and will remain in the message archives to haunt you. If you are upset at something or someone, wait until you have had a chance to calm down and think about it. Hasty, knee-jerk responses only serve to fan the flames. Take the time to formulate a well-reasoned response that places the discussion back on track.
- COMPLEMENTARY AND ALTERNATIVE TREATMENT DISCUSSIONS POLICY.
Regarding IWMF-TALK discussions about complementary and alternative treatments - it has long been the policy of IWMF-TALK (thanks to Eddy Anders and others) that, while we can bring forth questions about complementary and alternative medicinal (CAM) treatments to our fellow TALKers to inquire whether anyone else has heard of such things or uses them - when there is a lack of "scientifically trialed" journal articles about a particular course of treatment, the discussion is not appropriate on this list. Please be aware that references to opinion articles do not qualify as scientific proof of the veracity of a treatment/cure claim - just saying it's a good thing is not enough - it has to be thoroughly tested and verified. Also, anyone trying to advocate for or sell particular products on this list will be removed from IWMF-TALK. This is not intended as a slight to your opinion or to the fact that the treatment may actually be working for you and several others. Nor is the intent to steer folks solely to the "established" medical way of treating our disease. But, rather, it is intended to protect the larger number of our members as best we can against spurious claims (swamp water, bat dung, mushrooms, etc) that cannot be proven. If you do want a more detailed discussion of such items, you are more than welcome to join the IWMF-CAM discussion group, which was actually spearheaded by the late Jerry Berman (we miss you Jerry!). The group is a Yahoo group called WMCaM. For instructions on how to join this group, send an email to either Karen Fick () or Pete DeNardis ().')
- SIGNATURE/SIGN-OFF TAG GUIDELINES:
This is entirely optional (as some folks may not wish to share such information), but it would be of great help if, with each message we send, we append a signoff/signature that is something like what is presented below. For many, it is of great assistance in assessing the state of a fellow member's condition and comparing our own condition with those of others.
Here's a template you may wish to utilize for your signature:
Year of Birth; diagnosis date (Month, Year)
Treatments: cycles, drugs, dates
IgM at diagnosis, highest IgM and date, lowest IgM and date, current IgM and date
For an example, see my signature tag below...
Peter L. DeNardis (USA - Pittsburgh, PA) -IWMF-TALK Manager
born 1960, dx: Oct 2003
tx#1: x2 Cladribine Jan-Feb 2004
tx#2: (IgM: 5940 mg/dL) x6 Fludara, Cytoxan Dec 2004-Jul 2005, x4 Rituxan Dec 2004, x6 Rituxan Jan-Jul 2005
tx#3: (IgM: 1600 mg/dL) - with LPL tumor and symptoms); Cytoxan/Rituxan Oct-Nov 2010 and radiation (for tumors)
IgM at diagnosis: ???; highest 6570 mg/dL 01/2004; lowest and current: 75 mg/dl 05/2010
Please feel free to contact us with questions about IWMF-Talk or if you experience any problems. Our IWMF-Talk contact is Pete DeNardis at .
Tips to help handle the avalanche of messages that can clog your inbox:
- Set up a folder to automatically collect all messages from IWMF-Talk. This can be done within your e-mail software system. Check your "Help" file for instructions.
- Another option is to subscribe to the Digest form of the list. This will collect all messages from the list and send you one long collection every day. The downside of this approach is that you only get messages every 24 hours, at midnight. For instructions on Digest subscriptions, see the Quick Links above, or contact Pete DeNardis at .