Why was my PMR related discussion deleted?

Posted , 12 users are following.

Apparently something was said by me that was not allowed. I read over all the terms and conditions and can’t figure out what I said that was not allowed. I really like being on this forum and would really appreciate an explanation as to what I did wrong. A private email is fine but you are welcome to respond to this message.

I would really like to openly post about my PMR journey - but now I don’t know what I did that was wrong.

Thank you for enlightening me.

barb

1 like, 15 replies

15 Replies

  • Posted

    Ask the moderators. This is a website that also provides services and information for the NHS so is very tightly moderated - if you were talking about alternative medicine approaches for example there is a separate forum for that. But since I have no idea off the top of my head what was on your thread I can't make any suggestions. Was it an established thread or is the original post that was deleted? 

  • Posted

    Barb3389

    The same thing happened to me.

    I was giving useful advice to someone who was afraid of the actemra infusion.

    I was relating to something that helped me with the first infusion.

    I didn't think I was saying anything more than what I've read on our forum, but I guess I said something I should not have said because it never showed up.

     

    • Posted

      Are you sure? Links are computer monitored (normally at least) so held back. It can take a few days before it appears after being vetted. They have been quite strict though.
    • Posted

      It was not just the link, but the entire discussion including all the replys, etc.

      I will delete this discussion myself, in that it is not really relevant to everyone’s illness, and is just taking up time and space.

      THanks for listening everyone!

    • Posted

      You can't delete on this site - except by requesting it from the administrators. I can't remember the discussion - but it sounds as if it became a discussion about subjects that are simply not approved here.

  • Posted

    Did you link to another website? That may be the problem, or even one word they did not like can stop a posting. It is usually all checked by computer initially so quite easy for it to happen.
    • Posted

      Hehe - remember the thread complaining about the changes to Patient? I just found a doozy of a link on there - the lord only knows how it got through! 
    • Posted

      Yes, I did link to another website - maybe that was it? I thought I saw other discussions with links. Oh well....
    • Posted

      You do - but they have been approved by the moderators at some point. Links within the site, NHS links and a few others in the context of PMR have been allowed, some for a long time as this forum has been around for many years. But all are based on evidence based research or practice. This isn't the case for most supplements so they are left to the alternative medicine thread.

  • Posted

    Are you the one asking about supplements? May be the Moderator does not like us to talk about other way but just about prescription drugs.
    • Posted

      Yes - I was the one talking about supplements. I provided a link that I thought was very informative.

      That’s too bad if the moderator is not open to a discussion about ways that the PMR community can approach their illness. The article that I provided a link to, was the only piece of information that I had found that had another way to go about dealing with PMR in 2015 when I was diagnosed.

      I was hoping a moderator would contact me. I couldn’t find a way to contact them.

    • Posted

      It isn't the moderator who makes the rules - they enforce them. They obviously felt the link was to an alternative that couldn't be approved as representing the site in this context - there is nothing to stop you putting it in the alternative medicine forum as a post. 

    • Posted

      I'm sure things get deleted in that forum as well.  I remember that happening to someone.  I followed it for a while but because it is general alternative most of it was completely irrelevant to me.  I suspect posting on that forum would be a bit of a dead end.  

    • Posted

      You contact moderator by clicking on the "report this" button.  There's an option for feedback for moderator.  You may be able to find a way to post the information without providing the link, just directing people how they can find it.  Provided none of the key words are verboten that could work.

Report or request deletion

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