Back in 2003 and 2004 we ran a protected portion of this website as an initial experiment in sharing information privately among members of Canadian WM support groups (initially the trial project was solely with members of the Toronto Support Group). The purpose was to permit members, who might have been sitting across the table from each other during support group meetings, to check out the WM and treatment experience of their colleagues in an informal and confidential manner. This section of the website was private and password-protected so any information which members voluntarily decided to share with each other would not be accessible to the public at large. Furthermore, members concerned about privacy also had the option, if they wished, of recording their information under a pseudonym.

The purpose of this information-sharing was not scientific data-gathering but rather more personal and anecdotal — so that you could say, ‘oh yes, I see, Fred had no problem with side effects from his chlorambucil but it took a long time showing whether it was having a definite effect — but eventually it did and he’s very pleased’ — that sort of thing.

However, the response to this experimental invitation to share information was minimal and the experiment has now been discontinued. There’s no right or wrong in these matters. If members find that a combination of support group meetings and IWMF talklist exchanges adequately serves their needs, then that’s fine. Just in case this issue is ever re-considered in the future, there are provided below two illustrative links (in this case, not password-protected) of how this sort of shared information would look.

One is the information page for Rod Anderson (a patient)

The other is the information page for Merike Lugus (a care-giver, and Rod’s wife).