Please Enable Member Messaging (Open by Default)

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1

Great to see the forums back after so long. Really appreciated.

One thing that made these communities so valuable before was the ability to message each other directly. It helped connect people with similar issues or rare conditions, and was often more helpful than just replying in threads, especially since many posts are quite reactive and the original poster may never return or get notified.

Being able to reach out months or even years later to someone who shared your experience and just ask how things turned out was one of the most useful aspects of these forums. That kind of follow-up is so rare and invaluable, especially when you’re dealing with a health issue that has no clear answers.

Would love to see private messaging, ideally enabled by default, with the option to opt out. It would also be great if notifications for replies were switched on by default.

At the moment, clicking on a users just shows, “This user’s public profile is hidden.” This feels like a missed opportunity for genuine connection.

Thanks again for bringing the forum back.

1 Like
2

Hello,

Thanks for your feedback.

New users have slightly different default settings compared to accounts that have been migrated. One improvement is the updated notifications system — users will now receive alerts when someone replies to their posts, which is great news.

The new site operates on a system of trust levels. As users log back in, their accounts will become public again. We’ll also be re-enabling private messaging for those users in due course.

We hope to make many more improvements to Patient Communities and look forward to sharing the changes with you all.

3

Thanks for the quick reply. Great to see the admin team so responsive.

Glad to hear messaging will return. Will it be enabled by default once profiles are public again, or will users need to switch it on manually?

Appreciate all the work going into the relaunch.

4

Will our old messages be restored again?