Just my thoughts !!

I like this site for support and advice we share And offer . It's unique as when it comes to asthma we all know how asthma seems to be the poor relation in respiratory disease and illness . But the security and mentality around the site concerns me ... Many people appear to take advantage of others, befriending them then using the information gained from them to present as their own illness or to magnify their disabilities caused by asthma to gain further Attention and sympathy .. I know we all have a right as a member to present or views and experience but once again the competing Arena has opened up with who has the worse asthma or the worse accident and regency experience or the largest dose of Prednisolone ... I yearn for the jovial days once again when thro laughter we gave and sought support for asthma.

18 Replies

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  • Well said

  • Well said Gussypoo! Was thinking exactly the same thing, this forum has certainly changed and not for the better.

  • I thought i stumbled onto a support site for the self confessed mentally unstable and hypochondriacs!

  • Hello! *waves*

    I don't tend to be around here very often, so when I get called upon to take a look at a thread here, I worry about what I will find.

    So, this is what I've found. Two posts here have been reported to the mods:

    I thought i stumbled onto a support site for the self confessed mentally unstable and hypochondriacs!

    That's very close to being a flame. In fact, it may be one - depending on your point-of-view. I think we would appreciate an apology.

    Stray this post was not aimed at you so I wasn't hiding ... Unfortunately your post was too long to read and didnt interest me so I politely didnt read . Regarding your mental status I'm unlikely to be blamed for that and not my fault that you have misinterpreted it due to your paranoia . As I said this in response to reading many post on not just one ...

    This one was reported due to Gussypoo's use of the phrase ""due to your paranoia"". I think this is a fair use of the phrase, since Stray described herself as ""quite paranoid"" just upthread.

    Now, no other posts anywhere on the board have been reported for anything other than them containing adverts or research requests.

    Why is this?

    If people are having problems with what is being posted here, why aren't posts being reported? Especially with regard to ""competitive"" symptoms; post such as this usually break one or more of the T&Cs of the message board.

    Here's some stuff I wrote on this very message board in May of last year:

    If you have a problem with a post on the board, click the ""Report?"" link at the bottom of that post, and we moderators will be notified and investigate as appropriate. Open forum is not the place for this.

    If you have a problem with a member, or with a moderator decision, and now that the PM system is down, you should email webeditor@asthma.org.uk with the details and the entire moderating team will discuss it. Open forum is not the place for this.

    And then I wrote this:

    There will always be ""older"" members posting less frequently and new members taking their place. Every member here has an equal right to post whatever they want to as long as it doesn't break the terms and conditions of using the board. Membership of the board is not - and never has been - dependant on you having asthma (longer-standing members may be aware that I am not asthmatic).

    The way to get back to the ""old way"" is to be welcoming to new members, to politely correct any information that we spot that is wrong, to offer the advice that our shared experiences of living with asthma has given us to help the newly-diagnosed and the struggling, and to remember that what may seem trivial to us may be a ""big deal"" to another member, and thus it doesn't mean that their problem has any less merit just because of that. A ""real history of asthma"" provides the means to help those who don't have that history; but it does not provide the right to judge them.

    The most important thing I'm trying to get across is this: every member has a right to be heard. Every member has a right to ask a question. Every member has a right to reply to a question. And every member has a right to question those replies! And so on - it is a discussion forum, after all. If we all engage in the debates, offer our own advice if it is appropriate, or just offer some friendly support, without being judgemental or dismissive, we will have a message board to be proud of.

    Now, I realise that there have been no specific allegations aimed at any specific members in this thread, but it's not exactly the most welcoming thing you've ever read, is it? ""Don't befriend people or we'll think you want to steal their symptoms"" is not a message we want to give to new members.

    In defence of Gussypoo, he is not responsible for the reactions to this thread, and his comments have been sufficiently general to stay within the T&Cs of posting here.

    Stray, I'm afraid that I don't know of anywhere on the Internet (except perhaps for fully-moderated invitation-only message boards) that could offer the security you seek.

    Our problem as moderators and admins of this message board are that we can only act if someone has proven to have broken the rules of the board. We've seen our fair share of tall tales over the past seven years that I've been here, and rest assured we keep an eye on everything that is posted that looks odd. But we can't act if we merely have a hunch that something is up. We may be wrong in our assumptions.

  • I'm sad that you (Gussypoo, Feejay, EllieW, Picadilly) find the current state of the forum not to your liking. However, I feel the need to strongly disagree.

    I know some of you are long time members and I am basically a newbie, but I'd like to share my impressions.

    Firstly, this forum has been a godsend to me as I have worked to come to terms with an asthma exacerbation that started with a cold last October (2012) and is probably the worst for me in 20+ years. It remains uncontrolled after nearly four months despite excellent care from my GP who is quite knowledgeable about asthma. My GP is very good and anything but dismissive of asthma (he himself is asthmatic), but he can't be my whole support: he doesn't have the time and besides I do best with a variety of input from different perspectives.

    I chose this forum as my place for support because I was impressed by the general intelligence and maturity of participants. That's what *I* see over and over in posts, including those by current participants.

    Emotionally and physically this is a new experience. I have been able to use this forum to learn, to vent, to get practical suggestions, and emotional support when I need it. And also a good laugh from time to time as well. So for me it has served my purposes well.

    Second, I don't feel general statements like ""I don't like the direction/tone/mentality of X"" are very helpful. In fact I think they are counter productive. Because of their vagueness, they create an air of anxiety and leave some people needlessly wondering ""is this person criticizing me?"". That can hardly result in the fun, supportive atmosphere I imagine you all desire.

    Further, they criticize without pointing to a solution. I am all for constructive criticism, but constructive means having and sharing ideas of how to make things right. If I feel something unconstructive is happening a thread and I think I can nudge things in a constructive direction, I'll add a post with my thoughts. If I can't think of something constructive but I feel someone has said something that might be hurtful to others, then I might consider reporting it to a moderator who might have ideas of how to improve the situation even if I don't. But 0therwise, if there are posts not to my liking and I have nothing to say, then I simply skip them and move on. I leave them for those that enjoy hat sort of thing. There are all sorts on this site, with different personalities and needs. I don't expect all threads to be my sort of thing.

    In the spirit of being constructive myself...

    * if you don't like current posts, perhaps you could start a thread whose tone and discussion level fits your vision of this forum? I'm sure it would be appreciated and it would allow you to lead by example rather than merely state dissatisfaction.

    * or perhaps if you see a thread turning into ""I need more pred than you"" (really a bad idea given the side effects of pred and the goal being to get --off-- pred), you could add a constructive comment or two to that thread rather than just accuse vague unnamed people of having some sort of pink pill competition?

    * or perhaps you have some suggestions of your own?

    Third, this thread comes at a time when a number of regular posters are dealing with very difficult situations. Perhaps you are confusing the fact that at this point in time a lot of regular posters just happen to be struggling with some change in spirit in the forum overall? Most forums have ebbs and flows depending on who participates regularly and what is happening in their lives.

    In any case it feels like the timing is poor. To talk about ""attention seeking"" and ""illness one-upsmanship"", ""self confessed hypocondriacts"" in a vague way given the number of people struggling at the moment seems *to me* to be callous. I'm not saying you actually were being callous - I'm not in your skin and can't read your mind. I am merely sharing *my* reaction to it.

    Personally I don't think it is my position to decide who really sick and who is playing things up for attention. First, I don't think wanting empathy is the worst thing in the world. Second, I have enough appreciation for the complexity of emotional life, well behavior, and illness behavior to be VERY wary of trying to make such judgements from afar based on scant information in posts. From my point of view it is best to err on the safe side and give compassion rather than judgement.

    Best, beth

  • i agree with beth that some specific feedback might help - or people are going to feel paranoid, i hope i havent said anything to offend anyone, however if i do, it was unintended and id prefer it wa noted at the time and then i can explain whst i meant! obvs it would probably be unfair to name names but examples maybe

    and i think talking about people being hypercondiacts is pretty harsh - especially considering the issues some people face with doctors.

    and i have never noticed anyone whowanted to be on th higest pred, im prety sure whenever your on it your goal is to get off, or to a lwest possible dose, thats certainly how i feel.

    im sorry you dont like the forums anymore, personaly id struggle to cope without!

  • Thanks for your reply Beth ... But as you can see from my opening statement I am in support of the site and what it has to offer . I thought the 1st line was a positive statement of auk. Secondly I didnt mention names or persons so i wasnt mocking people but giving my feeling and interpretation of things ... Regarding timing my post was as a result to other posts and replies I had read and was hoping what would happen in the future .

  • Plus I said concerns I didn't say dislike .... It may have been better to read my post before the hasty replies .

  • Stray - I am so sorry to hear this though I can appreciate what you are saying. I for one will miss you as I've learned a lot from your posts for my part, and have enjoyed 'talking' to you on here.

    I really, really hope that you are able to get the proper medical support you need from your new resp cons and have some better experiences next time you need urgent medical help. While I don't have the personal experience of A&E, your A&E experience sounds an absolute horror (don't think I need to have seen alternatives to say that) and I hope your complaint does have some effect.

    Hoping you can find another avenue for support if you don't feel able to be on here anymore - and really hope to see you back (though better would be you not needing the support and kicking the asthma into submission so you feel well again, of course!)

  • stray - I *very* much hope you will reconsider - I've been very grateful for what you have had to share and it has helped me a lot. I for one would be very sad to see you go. But I also understand the importance of personal safety and you need to do what is right for you.

    Perhaps you will at least lurk and see how things play out? Sometimes the test of the overall health and safety of a site is measured in how it rides out challenges like this thread. In my experience, safety is found *not* in the absence of conflict, but in how conflict is handled by members and administration.

  • Stray this post was not aimed at you so I wasn't hiding ... Unfortunately your post was too long to read and didnt interest me so I politely didnt read . Regarding your mental status I'm unlikely to be blamed for that and not my fault that you have misinterpreted it due to your paranoia . As I said this in response to reading many post on not just one ...

  • Im a relative newcomer to the forum, so dont know what its 'mood' has been like historically. Gussypoo I havent taken offence, nor do I have any particularly strong feelings about your post - I saw it as you expressing your views (nothing wrong with that since they weren't directed at specific people or unpleasant). If you are not feeling that the forum is such a supportive and safe place as it used it be, and its affecting your use of it for support, then I feel you are expressing valid concerns. You feel how you feel, just as I feel how I feel - no one can deny an individuals feelings ;)

    We are all adults and should be able to cope with differing views and opinions surely..

    Lynda

  • I completely agree Lynda.

    I had written a beautiful reply which the site sadly lost but here goes...I'll try and put most of it down again!

    Gussypoo merely made some observations of the site as it currently stands and (from his perspective as a long term member) made some comparisons with how it has been in the past.

    He made no personal accusations or comments. In the past when this type of issue has arisen people have made reference directly to individuals or individual posts and that has then been seen as inflammatory and insulting and so he has, quite rightly in my opinion, merely made some impersonal observations.

    Gussypoo is not responsible for other peoples reactions to his post.

    I also am disturbed by the content and tone of many of the current threads and posts. Sadly I find little or nothing these days on the boards which is relevant or interesting to me. This has made me an infrequent visitor. An interesting conundrum - maybe if I was more ""present"" I would be able to influence things more......not sure if I have the inclination to try anymore......this isn't the first time this issue has been raised.

  • I must be blind as a bat, I had never even noticed the 'report' link! lol

  • Like a few others on the forum, I am a relative newcomer and cannot comment on what the forum used to be like in comparison to what it is like now.

    However, and for what it is worth, I have found it to be largely an informative and supportive place to learn not only about the disease itself, but the common problems others find with the drug treatments, triggers of asthma, and emergency treatment.

    I certainly have never seen anyone 'talk' about their disease/experience/treatment in any sort of competitive way.

    It is entirely correct that all members should have the right to express their opinions/views without prejudice or judgement, and I certainly hope that I have not offended anyone or given the wrong impression in any of my posts. Please, someone let me know if I have!

    Chuk

  • Good evening all.

    There certainly has been some debate and discussion here (and some valid points made) which is a purpose of these message boards.

    We are all individuals with our own opinions and experiences.

    Yes, the forum has changed and evolved with redevelopments and as users come and go.

    Moderator post

    Our purpose is to ensure the message boards are a safe and friendly place to go for advice, information and support.

    However, some posts could be seen as close to the mark so I will take this opportunity to remind people of the relevant terms and conditions everyone has agreed to here.

    These statements may not help the forum to be a supportive and welcome place. It may be more constructive perhaps to be friendly, answer questions or issues raised and to respect others. It is far better to contact the moderators with any concerns or suspicions and with specific examples to help illustrate the point being made. For anyone that has concerns, given the lack of private messages, I will remind you all that posts can still be reported by clicking on Report? in the bottom righthand corner of each post. Otherwise the webeditor can be contacted at webeditor@asthma.org.uk or moderators off forum where in contact.

    Now to answer a point raised above: Accounts cannot be deleted.

    Edit: Crossposting whilst multitasking

  • I personally believe if people don't like what the forum has become they have a choice to no longer visit, rather than writing a negative post towards others. Have we not been here before?

    I enjoy this forum, and think there are some lovely people on here at the moment. I don't read every post but only what interests me.

  • Can I please ask where in my post does it say I dislike this site ... And i would like to draw attention to what it does actually say ... It says I like this site .... I go oin to say I have concerns ..... So before anyone else, whom post a reply please read my post first before so the facts are straight .

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