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Patients Against Lymphoma

 

Support
 
Evidence-based Support and Information

Last Updated: 10/09/2017


From this page you can engage the online community in a variety of ways:

PAL Forum (web-based) OR Lymphomation (yahoo email-based) 
You might also Follow us on Facebook OR Twitter
 See also: Policies for PAL-Moderated Support Groups 
Policy Background 
Advantages of Online Support


Note: Our forums are evidence-based and not searchable on the web
to help to protect your privacy

   

 
PAL's web-based
message board: PAL forum


Click button:  Forum

The one time registration is a two-step process:
After clicking the Message Board button above, you will click Register Now, then respond to the email that will come to verify your account.

When you log in, check the box for
[ ]
Log me in automatically on each visit
and you need not log in again.

 
PAL's email-based
message board: Lymphomation

  Click to join Lymphomation

* Click to join Lymphomation

Go to messages

See Policies and Features below

* Click to join
MALT and MZL support forum

Go to messages

You may choose one or both support groups.  We encourage you to first review our Policies for PAL-Moderated Support Groups and the Policy Background.

* In the News:  Psych Central 2014:
7 Tips for Authentic Engagement in an Online Support Community

* See also an important message on Encouragement

Twitter

 

POLICIES for PAL-Moderated Support Lists:

We encourage members to ask and respond to questions.  This is when our support groups are at their best. 

We also regularly provide post news items on lymphoma, such as about new treatments.

Our purpose is to provide timely evidence-based support and information for all types of lymphoma of all types - Hodgkin, Non-Hodgkin (b- and t-cell), and CLL.

We make use of privacy features to protect your privacy.  For example, your posts are not searchable on the web.

Our lists are moderated. For Yahoo groups, only questions and responses that are On Topic will be distributed to all subscribers – all other posts will be compiled and sent as one email in digest form as time allows.  See for background below.

On Topic:
* About lymphoma and its treatments – or related medical issues.
* Your questions and replies are of primary importance! 

Our resource for information developed with the assistance of our scientific advisors: www.lymphomation.org 

REGARDING INFORMATION ON LYMPHOMA: Be cautious about accepting online medical information - particularly testimonials. Scrutinize the study methods (size, type and number of studies). Has it been confirmed by another study group? What are other experts saying about it? Does it apply to your diagnosis and circumstance? ... check with your doctor, who has training and first-hand information.   Keeping an open mind includes being skeptical about the information we receive!

As always, PAL moderators will reject or edit posts with disrespectful language (a rare event). 

Regarding CONTROVERSIAL TOPICS, such as public policy issues of concern to patients:

We will require politically neutral language in order to keep the focus on the issue of concern – instead of on a political party or a leader - or their motives.    We ask also that you cite your sources. The sources should be direct (not hearsay, opinion column, talk show host, etc.) An example of a direct source would be citing the law that sets a health care policy, or the published study that evaluated the intervention for lymphoma.   Be wary of sources that are partisan ... or does not provide for peer review.

As always, this is a work in progress - the purpose being to provide you with timely support and evidence based information on lymphoma and it’s treatments.

All the best,

~ Karl Schwartz, President
Email Moderator if you have any questions
 

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Background on moderation policies

On the Yahoo groups based lists we sometimes get emails from subscribers who want information only and resent getting their inbox filled with patient-to-patient correspondence.

That said, others appear to like having a feeling of community - where they can talk about anything anytime ... encourage one another, and get reassured (the community approach).

So these are two equally valid and understandable desires and expectations. Trying to achieve both or please both groups is not possible. We are not just giving lip-service to the value of the community approach, because patients and caregivers can be under considerable stress and some of us need and rely on this form of communication with other patients - or will in different parts of our life. The On-topic approach does not prevent but it does inhibit this kind of community.

In general, the smaller the group the less concern there will be with the open community approach. However, larger groups can get chaotic quickly with this format ... leading to everyone's inboxes getting flooded with information (political, shopping, personal issues, congratulations to individuals, ...) that is not meant for everyone or not what everyone has signed up for.

While we see the value of both approaches, the community approach is more prone to misunderstandings (blow ups, etc.)- especially in the larger groups in an email-based system. When this happens it can reflect poorly on PAL - an organization that depends on community support and it can make everyone feel uncomfortable.

So this is the reason PAL developed the PAL forum, because participants in that venue can chat and have off-topic conversations without these messages being distributed to everyone's inbox. So far it hasn't had a lot of that kind of activity - mainly it seems because t takes a little time to learn.

So the policy and guidelines We've decided on for Lymphomation tries to meet both goals by moderating posts to make sure they are on topic and of general interest to all subscribers.

We do appreciate that compiling person-to-person messages will not be satisfying to many because it interrupts the flow of conversation - but at least for now we  feel this is the better choice given the size of the Lymphomation group and its expected growth.

I hope you will join me in encouraging people to try the PAL forum (our web-based venue) to help to better meet the social needs of our community too.

Karl
 

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Some advantages of online support

You are not on the spot to actively participate ...  you can "lurk" - read messages without replying.

You can use an alias to keep your identity private when you do post messages.

You can ask questions of hundreds of patients and caregivers

You can provide encouragement, guidance, or share experiences and resources to help others in need.  You can also learn from what others share.  See comment in green from a list member below.

- Karl Schwartz
 
 Moderator, NHL-info, NHL-follic and NHL-MALT support lists

Nancy writes: I just wanted to say thank you to everyone in this group! Since joining the group no to long ago I have become more comfortable knowing that there are others out here with malt lymphoma. For a long while I really felt quite alone.

I can't tell you how much easier it is being able to read everything from everyone and learn so much more. I am finished with the radiation treatments but still undergoing some testing, and just knowing that this group of great people are here, I realize that no matter what I can make it through all this. The support felt from this group is awesome, stay together and keep writing, I always read everything written by all of you.  ~ Nancy (NHL-MALT)

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Related Topics:

bullet
* In the News:  Psych Central 2014:
7 Tips for Authentic Engagement in an Online Support Community http://bit.ly/1ib4rl2 
bullet
Nice Related Article - Learning about Cancer the Electronic Way - bmtinfonet.org
bullet
Online Acronyms - LOL, NAN etc.  | Our Commonly Used Acronyms

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Disclaimer:  The information on Lymphomation.org is not intended to be a substitute for 
professional medical advice or to replace your relationship with a physician.
For all medical concerns,  you should always consult your doctor. 
Patients Against Lymphoma, Copyright © 2004,  All Rights Reserved.