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  3. Polymyalgia Rheumatica and GCA

Request for Forum User Feedback

Posted , 21 users are following.

Emis_Moderator
Emis_Moderator

Hello,

We recognise that recent changes to the forums have not worked for all users. Therefore, we are now planning an update to improve users experience of the forums. As part of this we are requesting that you please add your requests or ideas that are your highest priorities as a reply to this discussion.

Once we receive a suitable number of suggestions we will put these into a survey where users can then vote for the change(s) they would most like to see in the update. Once we have the results we will do the required changes and share these with you for any comments before we release to the site to ensure we have got it right.

There are some things we cannot do such as removal of ads as they fund the site, reinstate emails for every post and reversion to old format of the site. All other constructive suggestions to improve the forums will be considered.

While we may not be able to do everything that is suggested in this update we will take note of users input in deciding priorities.

Thank you for your time.

Regards,

Patient

1 like, 74 replies

74 Replies

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  • jean39702
    jean39702 Emis_Moderator

    Edited

    I may be too late on this having just noticed the notification, however, I've given up on this site. I've done everything I know to receive automatic notifications without any luck.

    I have the icon on my desk top and open it on occasion. When I do so there are a few notifications from days or weeks previously. I've followed this site for years and can't imagine the site if that inactive based on my past experience.

    • Anhaga
      Anhaga jean39702

      Posted

      Unfortunately it now is that inactive. Almost everyone has given up except a few of us who check in from time to time to see if a new person has posted a question which needs answering.

    • jean39702
      jean39702 Anhaga

      Edited

      Interesting that the site has become so inactive. I guess people have gravitated to the HU forum. Nice that you and others are watching out for the newbies. I've never felt competent or confident enough to offer advice in that regard. Thank goodness you and a few other special folk are able to do it so well.

      Also interesting that your post came to my inbox which hasn't happened in months.

    • nick67069
      nick67069 jean39702

      Posted

      jean, if you get direct response, then you will get email notification, but it takes about 6 hours for the notification to be generated by system.

    • EileenH
      EileenH jean39702

      Posted

      It has only become inactive because it is now so hard to use. Before I came whenever I had a notification of a new thread and then looked at all the rest - now I'm not told there is something to look at I forget to come and look. Last time I was here I had about 3 or 4 things - but one was a reply to me personally so I was notified. No-one has replied to me since - I've been busy on HU.

      It just reflects a total disinterest on the part of the site - the impression created is that decisions are taken by young trendy programmers who have never needed to use a support forum or even been sick and certainly not elderly or visually impaired and then when the experienced chief moderator asks for a disaster to be reversed they just don't. This is about the 5th such mess, every time we protested but were ignored.

      I gather this happened because during Covid people joined and then objected to having hundreds of notifications in their email - and instead of telling them to be more selective, the long standing forums are left in a mess by getting NOTHING at all.

      It is such a shame because the HU forum wouldn't exist without the original PMR and GCA forum that patient.info set up years ago. Ladies who met here started the charities and forums - just as well as it turns out.

  • ptolemy
    ptolemy Emis_Moderator

    Edited

    I am finding that each page is now taking an inordinate time to load. My speed it around 50mb.

    • Anhaga
      Anhaga ptolemy

      Posted

      This has been a major problem for me since the changes made some time ago. It has never improved although a few other issues have been dealt with. My internet connection is high speed, and I have no trouble with any other site I access.

    • ptolemy
      ptolemy Anhaga

      Edited

      Same with me. It started after the recent changes and is the only site that I have this problem.

  • nick67069
    nick67069 Emis_Moderator

    Posted

    Minor problem...

    "Mark as Read" option does not work. If you select one or more posts and then click on "Mark as Read" it only clears the checkmark and post is still "unread".

    "Mark ALL as Read" works fine.

  • alley2
    alley2 Emis_Moderator

    Posted

    hi all not been on for a while just started on Methatrix weekly had my third dose feel good. How does it affect anyone else taking it. Im on 20 pred been reducing its going well

    • Anhaga
      Anhaga alley2

      Posted

      Try website HealthUnlocked, the PMRGCAuk community, if you want any replies. You could try posting a new post here but this forum is no longer active enough.

  • Anhaga
    Anhaga Emis_Moderator

    Posted

    This forum should officially be discontinued. It is not fair to lead people on who are looking for advice and support but there's hardly anyone left to reply. I don't seem able even to private message people any more.

    • Emis_Moderator
      Emis_Moderator Anhaga

      Posted

      Hi Anhaga,

      We can't close forums just because users have moved on or left. I am aware of the situation and do feed back what is happening in the forums.

      Re the PMs - we sent an email out before disabling them. Without going in to specific details, the issue we've got is a few users were using the PMs to spam users in a serious manner so we've had to disable them while we ensure this won't happen again in the future. I do not have a timescale for when they will be back at this time.

      Alan

    • Anhaga
      Anhaga Emis_Moderator

      Posted

      I don't get any e-mails from Patient so I guess that's why I didn't know.

      I do follow a couple of other communities and they are even more dead than PMR. Also I seem to get notifications from communities I never joined, usually related to muscle disorders.

      It really is a tragedy. Before all this happened this was my preferred forum because it was so well organised and easy to navigate.

      I am sure Eileen would like me to say hello to you for her. She seems to be unable to log-in any more.

      Thank you.

      P.S. I hope you have been been keeping well during these trying times.

      Jean

    • EileenH
      EileenH Emis_Moderator

      Posted

      I haven't had an email from patient for months. About anything, never mind PMs.

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