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Lichen Sclerosus group suggestions etc

Posted , 6 users are following.

Emis_Moderator
Emis_Moderator

Hi all,

Due to ongoing discussions/messages etc lately I suggest I post a new discussion as below and I will pin it so it will be the first discussion on the LS group page here https://patient.info/forums/discuss/browse/lichen-sclerosus-1341.

For the links to useful discussions and websites - I will ask for regular contributors to suggest which are the best discussions/sites to start new users off (not too many, I was thinking 5 max). It may be worth starting new discussions x 2 as below or similar?

Lichen sclerosus - Conventional therapy

Lichen sclerosus - Alternative therapy

Note: suggestions for websites still need to meet the T&Cs, ie not commercial etc. I have just added one for now as I have been asked about it before.

I would also like to remind users here about previous communication about opinions, repeated posting of the same views and/or pushing products, web sites or names. I still have not caught up with things so if anyone knows of any discussions/threads that can actually be removed or moved to the Alt Med section let me know. I will still be scanning through the LS discussions when I have time and may start removing/editing posts as required.

Note: I do not have time nor will I get involved in any "she said this and it's wrong / I don't agree with it" type postings or reports UNLESS the posts descend into personal attacks etc. I hope you can all continue posting and help each other and hopefully the proposed new discussion below will help.

If you have any other suggestions specifically for the LS group or questions reply in this discussion (not the proposed one when it comes). This can also include questions about the possible survey/spreadsheet that was discussed before if it is still something users want.

Below is a first draft of the proposed discussion to welcome new users so please feel free to reply with suggestions or changes here. Exisiting users may want to add their potted history as I have suggested in the below once it's on site. I suggest this as it saves you having to repeat your situation in other discussions. You can just link to the discussion below once done if you do want someone to read your story/history.

Regards,

Alan

PROPOSED PINNED DISCUSSION WHICH I WILL POST

Title - New to LS - start here

Below are various resources for Lichen Sclerosus from leaflets to useful web sites and recommended discussions. You may wish to reply to this discussion as a way of introducing yourself to other forum members and giving a brief history of your situation.

There is a patient leaflet on LS here which also has related tabs with more information, support groups etc.

https://patient.info/health/lichen-sclerosus-leaflet

Below are other useful websites:

http://www.lichensclerosus.net/

and any others to be suggested

These are discussions which you may find useful to read and/or reply to as recommended by regular users of this forum:

https://patient.info/forums/discuss/dr-goldstein-lecture-271556

and any others to be suggested

2 likes, 36 replies

36 Replies

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  • Emis_Moderator
    Emis_Moderator

    Posted

    Hi all,

    Just to let you know I am aware of the replies and suggestions here. I will be in at some point to reply to each point/suggestion once I find the time. I will say for now that I will be adding several FAQs to the forums guide linked in my first post. These will be things like how to link between discussions, how to bookmark discussions, how to find other users' posts/discussions etc.

    Re my suggestion for 2 discussions, one for conventional and one for alternative - this was just a suggestion but it is up to you, the users, which would be useful and clear titles to try and avoid these confrontations. I was just trying to get new discussions going that could "start from scratch" that were succinct and factual so a clear and easy read for new users rather than haviing to "trawl" through very long discussions and try and pick out useful information between any "side discussion" or chat. The nature of these forums is that some discussions do end up being a chat type thread and a catch up between users. I realise some users aren't keen on this while others are very happy as it is ongoing general support and updates. We can cater for both which is another reason I am doing this smile. I will add another (simple) suggestion about this later.

    Alan

  • Emis_Moderator
    Emis_Moderator

    Posted

    Hi all,

    Sorry for delay in getting to this but have been busy with other work.

    I have read all of the comments and will add several replies here so please do not post here again until I have finished - I will let you know when this is - it may take some time. 

    Re stem cell, other therapies and the "dichotomy" etc:

    I have spoken to many users about this, not just in LS but throughout the forums. These are open forums so all posts are users' own opinions and I will not get involved in who is "right" or "wrong". I will also not be so proactive in moderating the forums as other work takes precedence so will rely on user using the "Report" links to bring things to my attention, more on this later.

    I refer users to http://patient.uservoice.com/knowledgebase/articles/398318-alternative-medicines-opinions-etc. The main issue with the "alternative medicines and theories" believers is the problem that they will post the same or very similar post(s) in many discussions and also take over individual discussions. This is when it becomes an issue for other users getting opinions forced on them and they then leave the discussion. I know some will say conventional users do the same but believe me from moderating it is the former that is the bigger problem. I am entirely unbiased on the differing views but this is a breach of the T&Cs so please do not do this. 

    This is also true of "campaigning" for a specific book, product or regime. These forums are not for the use of promotional activity and I will be checking into this. 

    To this end I have expanded the Alternative Medicine group name to Alternative and Complementary Medicine if users do wish to discuss these generally outwith the LS group.

    I have also created an Autoimmune Disorders group as this seems to be another area causing issues. This can be used to discuss LS along with other Autoimmune disorders, ie general discussions not specific to LS but including thyroid and others.

    All of the above is not "segregation" but is intended to give users relevant areas to discuss the differing aspects of the subjects, not just LS, don't forget there are about 1 000 different groups in these forums. What I will say about posting in the LS group is when you start a new discussion make it very clear by the title and/or intro what the subject matter is so users can decide quickly if they want to join in or not. For example if users want to discuss stem cell therapy - start a discussion called LS and Stem Cell Therapy. 

    There is no problem with posting a discussion or a point of view once (whether in LS or other groups) and referring users to it in another discussion if they do want to know more. I have added an FAQ here about this:

    http://patient.uservoice.com/knowledgebase/articles/398389-how-do-i-find-and-or-link-to-posts-by-other-users

    Regarding reporting posts - please do not use this if it is a case of you simply not agreeing wih a post. It should only be used to report "real" issues such as abuse or breaching T&Cs etc. 

    As Suzanne said  tolerating each others' differences would be a good goal. This discussion itself has turned into different debates on the various views.

    I will stop for now but I will be back to address other points in this thread and will also answer individual points as well as suggest a new version of the proposed pinned discussion for newcomers. Please be patient and as I said above do not post in here again until I have replied to all of the existing points raised.

    Thanks

    Alan

     

  • Emis_Moderator
    Emis_Moderator

    Posted

    Below is what I now propose to add as the pinned discussion. As I said in another reply - if users want links to specific discussions please start these and suggest to me. I envisage these to be "to the point" and useful to new users, not threads that have gone into "chat" mode that users have to trawl through for the "good bits". The only real individual discussions that have been suggested is stem cell, causes and the book. 

    As I also said and commented elsewhere on - it is the nature of these forums that some threads will turn into chat type and/or catch up type discussions which is fine if users want this. Just indicate in the titles if it is a chat type discussion. I can easily edit existing discussion titles if it would be useful for either linking to or indicating it is now a chat type discussion.

    I will post the discussion as below tomorrow without links to individual discussions for now. It is easy for me to add any as and when they are created or suggested. The same is true for any other websites if there are any as long as they are within the links rules.

    I hope all of this helps and everyone can carry on posting happily but let me know if you have any other suggestions or questions. I do have a few more FAQs to add but if I haven't covered anything in the Help section let me know. This is my last post in here for now so over to you (be gentle wink)

    Alan 

    Title - New to LS - start here

    Below are various resources for Lichen Sclerosus from leaflets to useful web sites and recommended discussions. You may wish to reply to this discussion as a way of introducing yourself to other forum members and giving a brief history of your situation.

    There is a guide to using the forums here:

    http://patient.uservoice.com/knowledgebase/topics/59133-discussion-forums

    There is a patient leaflet on LS here which also has related tabs with more information, support groups etc.

    https://patient.info/health/lichen-sclerosus-leaflet

    Below are other useful websites:

    http://www.lichensclerosus.net/ - Information to help manage LS

    http://www.lichensclerosustreatment.com/ - webinar from Dr Goldstein. Lichen Sclerosus The Unspoken Pain

    Other discussion groups that may have relevant discussions to LS:

    https://patient.info/forums/discuss/browse/alternative-and-complementary-medicine-3763

    https://patient.info/forums/discuss/browse/autoimmune-disorders-3827

     

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