New categories and forum features: Coping and Connecting


Hi guys,

I’m pleased to announce, in an attempt to expand patient support networks, the addition of a top level category and a subcategory with a unique feature to enable patients to easily locate and connect with one another.

New category: Coping

Posts or topics with a focus on pharmaceutical or supplemental therapeutic attempts or member theories regarding etiology will be moved or removed from this category.

This category is intended to expand the support focus of the website and provide a place for people to discuss coping strategies and talk informally about things that they like away from the context of specific discussions around symptoms, therapeutic attempts or member theories. I know some of you might not think this is useful or relevant, but people seek support here for different reasons and many are not interested in these discussions. It has been a disappointment to some, including myself, that currently the forum can appear to neglect this and give the impression at first glance of an alternative health forum. While a lot of the (often recurring) topics are in regard to therapeutic attempts, this is a patient support forum.

Users have expressed interest in a more friendly board focused on connections and support, so I am pleased to announce this part of the forum for members to discuss the things they like, interests, andthe little things they do to try and manage day to day. As per the community guidelines covering use of the site and forum, we ask users to be inclusive, non-judgemental and understand that members are in very differing conditions in terms of affected physiological sites and severity. With that said, whatever your situation, if there is something that brings you a bit of peace that is not to do with therapeutic efforts towards treating your symptoms or your personal theories, please feel free to talk about it here. It is our hope that this will allow supportive friendship to be better fostered.

New subcategory with map feature: Connecting

In keeping with support, we want to improve the options patients have for connecting and making friends. I am therefore pleased to introduce a feature for those who wish to connect with sufferers locally. After discussion with awor and the PFS foundation, this is intended to augment the patient connection service they offer through their mailing list. It will help patients make connections more directly, with greater control over with whom any personally identifiable information is shared.

When users make a topic in this category describing yourself, situation and what you are looking for, you are able to share your city/area. This will be viewable on an integrated map. Others viewing the topic may then choose to reach out via private message to establish contact. This new subcategory is solely for this purpose, and will feature a global map of places sufferers wishing to share their location and reach out are located, so members can easily locate existing patients near them. This map can be viewed from within the category or from the top drop down menu at any time.

I hope you see this as a positive step.

Thank you and best



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