Saddened by the nature of some of these messages

I used to use this message board a great deal but stopped about a year ago as there were many users who lied about their asthma and much worse. I am sure many of you will know what I am referring to. I have just come back on to read some of the posts and I am so sad to see that many people still seem to be competing with each other about their symptoms. This is part of the reason that I stayed away from the board last time. I know that the majority of you are not like this but it seems to affect a number of threads on here. I wish we could all support each other without people coming on with the ""Mine's worse than yours"" syndrome. I also agree with moderators posts about people wanting emergency advice from these boards. Definitely not safe and is upsetting for those who know exactly what the consequences of severe asthma can be.

36 Replies

  • Hey Karly, having recently become a member in the last couple of months I am unimpressed by the board. An asthma diagnosis isn’t great for surfing at the best of times and when I initially signed up I was hoping to find some friendship and support.

    Instead I find a board of medical condition oneupmanship, where symptoms are a competition and attention seeking is prevalent. Members posting up drama queen-esque comments, becoming spiteful when replies aren’t immediate. Life is stressful enough without dealing with the complexes of some melodramatic flamers!

    I want to remain a member and post my weird questions for many wheezy years to come, and I know from the friendly replies I’ve had that the majority are welcoming and helpful.

  • some people on this board are very ill and anyone that pretends to or makes out to be worse than they are needs to take a reality check and see how scary and dangerous asthma is for some people.

    it makes me feel sick to think that someone would lower them self to pretend to be,

    most people on this site are genuine and caring people with alot to give even tho there bad there self,

    there is plenty of good advice off this site but at the end of the day that it is only advice,

    for anyone that has said they are worse than they really are i think they should see what it can really be like and not so keen to fight for attention,

    hugs to all the genuine people

    mel xxxxxxxxxxxxxxxxxxxxxxxxx

  • I only joined this forum after having my first asthma attack a few weeks ago (had it since i was 13 years old) now 34 years old. So haven't done too bad!

    Why would anybody want to lie about their illness!! I find that quite shocking. Asthma isn't something you can play with. My asthma was flared up by a bad virus/bacterial infection. I was really scared.

    When i was younger i can remember a lady who lived in my village collapsing & dying from having an asthma attack at the bottom of her stairs. Its a life threatening condition if not treated properly.

    I have found asthma very hard to come to terms with these past few weeks! Or as my GP said last week 'very angry with it'.

    I will continue to use this forum as i have learnt alot from it. Thankyou to the people who have given me advice, it has been very much appreciated :)

    Thanks again

    Julie X

  • There does appear to be a lot of symptom competition - the board does seem to be a bit of a club too. I'm not sure if new members really are welcome as is claimed. I'll probably be banned now !

  • I personally dont understand why people want to lie about having asthma,for those who dont understand what asthma is,its a life threatning illness that manages to kill people each year and i know what its like to suffer with uncontrolable asthma and being asked by other students in my school do i like having asthma and find it ""cool"" the answer is no to anyone out there who is faking to have asthma or make it seem worst than it is.

    This board and threads is here for other asthmatics to share there personal experiences and for people to talk to who understand what its like to have this illness for you who dont have it grow up because your making yourself seem like a low life and you need to realise that this illness is serious and not something you can lie about so if you really do want to be apart of a forum at least be honest with us all and not lie or go to a forum that welcomes everyone for example a chat room or go to google and put in the search box forums that you have personal intrests in and not what you want to make people feel sorry for you if you havent really got asthma becuase those who live with it day in day out know what its like and its not a great confidence builder for us, so do us a favour and you by not logging on to this forum,or by being honest and if you do want to be apart of the forum have a reason you dont have to be an asthmatic but if you are going to be on this forum and you dont have asthma be honest and also tell us if your here for support because a loved one or someone close to you has the illness

    sorry to everyone if this seems rude but i have never understood why people would want to lie about such a thing especially this

    toria x

  • Woodentop, I don't know where you get the idea from that you'll be banned for expressing an opinion; I'm also worried that you don't feel new members are welcome. We have new members joining daily, all you have to do is start posting and join in.

    ""Camping"" is a thread where a lot of asthmatics (severe and otherwise) share their experiences, but it's the only thread on the board of this nature and new contributers are welcome.

    As mods we are always interested to hear of problems so please do let us know.




  • *sigh*

    Fact of the matter is, I agree completely with all of these posts (with the exception of the post by Woodentop - see Cathy's excellent response).

    I started moderating for Asthma UK (along with CathBear) about 2 years ago when a number of fraudulent board users threatened the very existence of the boards. Cathy and myself, with the help of many other members (most of whom are still members here today) spent hours sifting through the topics and threads and weeding out the fabrication from the fact. And then, for two years, the board ran smoothly.

    Now it's starting again. Now that Christmas is over, are there a lot of bored people out there with nothing better to do?

    I'm gutted by the state of the board at present. I despair at the amount of rubbish that I see posted. Genuine newcomers get put off by the air of competition; the genuine, established members are overshadowed by the many ""users"" that are here purely to seek attention and brag about how ill they are. And though we moderators are trying gamely to keep on top of everything, there's only so much we can do. And then, looking at the state of the board at present, I wonder why we bother.

    So the best I can do for the time being is give a heartfelt plea:

    Please, please don't be put off from posting and joining in on this board. The genuine users (and you'll find a load of them in ""camping"") are the nicest - and probably the most knowledgeable - group of people you're ever likely to meet. The ""cliques"" that come and go are almost always the result of fraudulent posters; and to make matters worse, the many different ""users"" in these groups are sometimes all created by the same person. How to get rid of them? Starve them of the oxygen of reply; ignore them and they go away.

    To those of you - and yes, we know you're out there - who are determined to undermine the genuine members, the moderators and the work of Asthma UK as a whole by posting a collection of hysterical nonsense and downright untruths here, I have only this to say: we are stronger than you, THIS BOARD is stronger than you, and we will not be ruined by your petty, childish games.

    Thank you all for your messages of support. Hopefully we will soon return to how we were.

    Best wishes to all,



  • It is sad to see the amount of competitiveness, medical one-upmanship, aggressive behaviour and what I can only assume to be straightforward deception that has appeared on the board in the last few weeks, and it is even sadder to see that old and new members are being put off using the forum. I don't think, though, that we should allow that to distract us from the very real sources of information and support that can be found on the board.

    Before I joined the forum back in March 2006 I felt incredibly isolated, as if I was the only person with brittle/severe asthma in the world. Through AUK I've come to realise that I'm not alone with it and I've found the forum to be an amazing source of information, support and friendship. I personally am very grateful to all the regulars here, and most of all to the moderators; it's been a very hard few months and this board has helped me to get through it.

    If we let some of the more destructive posters spoil that sense of support that we have on the board we undermine everything that the genuine posters, and most of all Steve and Cathy, are trying to achieve. Let's all please do what Steve says and ignore the trolls, and carry on posting.

    To Cathy and Steve, I would like to say a very big thank you for all your hard work. It must be soul-destroying to see all your hard work being thrown in your faces by those people who seek to damage the board, but know that there are many people who really do appreciate your efforts!

    Em H

  • I feel like I might've missed a big upset somewhere - during my A level exams last year I kinda lost track of posts and neva did manage catch up properly.

  • I agree that the messageboards can be troubled by one-up-man-ship and trolls. It is sad that we are back to a similar point to that which put so many off posting - is it really 2year ago? I have taken a long time to trust the boards again like many others, and feel sad that this trust is once more being undermined.

    I would like to add my thanks to the moderators, Cathy and Steve you have been great and are so helpful when any concern is raised.

    To those who feel that the boards can be cliquey (is that how you spell it?), and unwelcoming, please do start to post, you will find you are welcomed - we were all new once, and do want to encourage new people to join in. Camping has become somewhere that many of us know each other, both online and offline, but we still welcome others - I guess those of us with more severe asthma feel that it dominates our lives more than others, which is why those with difficult disease are more likely to post, but we do value other folk reminding us that it isn't always like that.

    Please help this board to be a supportive place once more. It is a wonderful resource so lets not lose it.


  • I agree with what others have posted here...

    Many thanks to Cathy & Steve for all their hard work which they do in their own time!

    And to everyone else ... please pop into 'Camping'! We always welcome new people!


  • well i have to say that in the few weeks i didn't post i really felt alone and wonder now how i would manage sometimes without the support of those on AUK. many thanks to all that make it such a supportive website including the moderators. i feel as though i have a virtual family now for support who understand me better at the moment than i do myself.

  • Agree with all thats been said and appreciate the support I have received here, thanks again to Cathy and Steve for doing what probably seems an endless and thankless task moderating. Hopefully things will settle down again now, I havent posted much recently as ive got to much going on with Sean at mo to let myself get so irritated by trolls. Looks like trolls have started to get message as things not quite so insane here!

    J x

  • Thankfully things are settling down all we need now is to continue to support and help eachother. Anyone living with chronic illness appreciates how debilitating this disease can be let alone dealing with other health problems, families, kids, work, not being able to work etc. We all need eachother and we do welcome new people here. Just make yourself know and join in.

    The only times we get frustrated is when people who exaggerate or are trolls try to destroy the hard fought friendship and support we have been able to experience. We are in the usual position where we could feel totally isolated by our symptoms especially when Drs dont understand. But being able to ask quests here and realise we are not alone or unusual it gives us the strength to keep fighting.

    Big hugs to all!!!!!!!!!!!!!!!1

  • I agree with Katherine about the virtual family

    People who don't get asthma don't really understand the dangers of it, or how it effects your life.

    I am back to work on monday. I always worry what people think of me (to much). I'm scared of going back because, where i work its like a competition.....look i'm ill 'but i'm at work'. So because my virus has triggered my asthma off, i feel as though i have failed! I hate thinking this way. I was very angry having to be signed off another week. (my asthma nurses decision) doctor agreed. I'm glad in a way because it means i have really felt much better this week.

    I even took my dogs out for a spin, first time in 2 1/2 weeks. My partner has been taking them. I was so overwelmed watching them run around the field i could feel my eyes well up.

    MMmmmm fresh air!!! You can't beat it :) Got home and coughed up a good amount of phlegm. So it helped clear my chest. It was really warm today as well. There was a real spring feeling in the air.

    Received my first asthma magazine today. So when i got home i sat and ate my curried lentil soup & read it. Its very good!

    Hope you are all well!

    Julie X

  • I agree with what everyone has said lets hope we can continue to give each support when we need it by using the forum thanks to everyone who has helped me since i joined last year. Sharon

  • i've been away from a week, and just catching up on some of the posts, i ahve to agree with most of the messages here, was hoping that it would ahve calmed down but sadly not.Just like to say that i feel welcome here, i know not ""new"" anymore, but am a sporadic poster, but still feel welcomed here, adn for that thanks, and for newbies out tehre who are genuine - come and join in! It does help!Cal

  • Still a bit too befuddled from my ""wee splattage"" for a long post but can I say a very heartfelt thank you to Cath and Steve, who were fabulous when I was getting trollish PM's I was bearly able to cope myself at the time and they were fabulous at supporting me.


  • *blushes*

    Thanks Bex!

  • Just realised I've been reading this for ages but still not posted.

    I'd like to say a big thanks to all the friendly & helpful people here (who are definitely in the majority). My asthma's only mild, but that doesn't stop me from having questions, or from sometimes feeling scared & wanting reassurance that I'm not on my own. When I first found this forum I was a little worried that those of you who are suffering far more than me might be a bit dismissive of my worries but that's not the case at all & I've always been made to feel welcome.

  • I, too, have found te message boards really helpful. My asthma nurse recommended I joined up, after I'd been told my asthma was brittle in nature. I only knew of one type of brittle and that scared me because I thought my asthma wasn't too bad. The help and advice and support I have had over the last year has been great in helping me to understand my own asthma. Most of the time I am well controlled now but my allergic reactions are extrememly rapid and getting more severe and scary. Reading other people's messages makes me realise how fortuntae I am to only have the atopic type of brittle. thanks everyone for all the advise and support.

    Ange xx

  • Earlier in this post I wrote that I thought that the board was not welcoming to new members and was very ""clubby "" However, I was told that this was not the case and I should post a message to see how friendly and helpful people were.

    I have had concerns about my long use of Prednisilone and asked what the effects were of taking it for many years. I duly posted "" Pred problems"" and waited for a friendly reply. The response was a big fat zero. I'm sure if my username was one that was recognised there would have been lots of replies. Case proven I think.

    I will still continue to look at the board but won't post as there seems little point.

  • Earlier in this post I wrote that I felt that the board was not welcoming to new members and was a bit "" Clubby"". I was told that this wasn't the case and I should post to see how friendly eveyone was.

    I have been on Prednisilone for a few years and am very concerned about it. I posted a question called ""Pred problems""

    I then awaited the friendly replies. The response was a big fat zero. I'm sure if my user name was that of a regular user there would have been many answers.

    I rest my case.

    I will still read the board messages but won't post as it seems a waste of time for a newcomer.

    Don't be cross with me for pointing this out - I'm not out to upset anyone.

  • Woodentop - you say ""I'm not out to upset anyone."" Well, you're going a very strange way about it.

    I'm afraid that your post earlier in this very thread has probably adversely affected people's opinions of you. And this one hasn't helped either, quite frankly.

    At the moment quite a few of the long-term pred users who use these boards are in hospital. Did you consider that might be the case before virtually demanding a reply?

    We are, as has been said over again in this thread, very welcoming to newcomers. But it's a two-way thing, and posts like yours perhaps show that you reap what you sow...

  • Woodentop, there will be many reasons why people habent replied, as steve said many people are acutely unwell at the moment either in costa or struggling at home. There is a general decline in posting on the whole board at the mo not just your thread. I personally am not posting as much as I got fed up with trolls/attention seekers taking over every thread competing with symptoms and am also really struggling to get to grips with my sons deterioating health. I have left a reply for you on the pred prob thread. Anyway im not going to ramble on as my bp is high enough without keep getting annoyed with posts on here!

  • Hi Woodentop

    sorry to hear you haven't had much response - I read your post but I am on and off pred like a yoyo rather than stuck on it, so didn't think I could help. Like steve says, a lot of the constantly-on-pred people are in hospital at the mo, so replies might be a bitty slow. Hope you haven't been put off- do join us on camping if you would like to get to know us better


  • Hooray ! Some replies now ! Thanks

  • So is that the reason behind your messages? It sounds like you were simply posting to generate a reaction.

    It may have escaped your notice but flaming is against the rules and conditions of the board.

  • Well maybe next time you wont have to throw toys out of cot and stamp feet to get response :-) Messages dont get ignored on purpose but neither is there someone on call 24/7 to answer.

  • Working for Satans legal team here,I know someone else who posted a query and received no replies-now I fully accept that no-one has a ""right"" to automatically receive a reply ,but I can see why people may feel ""outside"" the circle so to speak.

    I have received good advice myself (take a bow Alison!) and enjoy the verbal banter in off-topic and Ive had my Everton FC stuff tolerated so thanks,but as a newbie I can see where some of the negative stuff comes from,there is a tendency for a persons enquiry to get ""lost"" in a general chit-chat between more established members-its the internet equivalent of turning your back on someone.

    Having said that ,there are a lot more plus points to the site than negative ones-thanks for your patience,


  • As it has been said before there maybe reasons for people not replying, I really disagrree with you translating that into people turning backs on people. For example I have not replied to two posts on parents recently, the posts were queiries people prob presume I would have thoughts on as my son is severely asthmatic but I havent answered as I accept my sons not your average asthmatic and my comments would probably scare the living daylights out of a parent with newly diagnosed child.

    Maybe I wander round this site with my eyes closed as i dont see this clicky group thats being talked about. It takes a long time to build friendships and trust on the internet as people arent always what they originally seem. At the end of the day everybody who uses this site has one thing in common, we are all affected by asthma in some capacity whether its ourselves or family. Surely its not to much to ask that people just give each other support when they can but also accept some days people just need to be quiet and deal with things in their own way.

    Anyway thats all ive got to say on this thread, we all have choice... accept the support and friendship offered with all the attached quirks or use another forum that suits your needs.


  • Hi everyone

    I just wanted to say that although I'm not a frequent user of these message boards I have really appreciated the advice I've been given when I have posted. I often feel very selfish that I ask for advice from others but am not knowledgable enough to give others advice. My daughters asthma was horrendous last year and it was a comfort to talk it over with others and get reassurance from them. I didn't feel there was a competetiveness with others with symptoms, I just felt reassured that we weren't alone and theat there were other parents in the same situation as me.

    I don't think I'd have been able to manage without the support I got in here especially with people pm'ing me and taking time out for me.

    so thanks everyone



  • Julie has a point. Many of don't post a lot cos their experiences are at the very very extreme end of things. I have a friend who was recently diagnosed with asthma she wanted to know the time scale till her asthma got like mine. She assumed that it was just a gradual slide and that everyone ended up getting nasty attacks at the drop of the hat.

    There is also another very serious reason that some are extremely careful. When I first arrived here I was open and willing to discuss what I was going through with anyone. But some kept asking via PM how it felt in ITU, what was it like to go off suddenly, what treatment did I get in resus, how did I communicate what I needed, what my peak flow chart looked like, what dosages of medication I was on. It took a while for me to realise there are some people out there who used this information to gain attention. Now I am very very wary.

    So we do pull back sometimes, and if we seem cliquey its cos when you do meet in real life someone who has been somewhere close to where you are there is bond and one that is (thankfully) one that you share with very few people.


  • Without wanting to push the stick in the wasps nest again,I think the main drift of my post was trying to identify why some people feel this way about the site-Im almost certain I did praise the site from a personal point of view



  • Bluejam I'll try and answer your question.

    I’ve been on the boards for nearly two years now and have worn some colourful wigs during this time, and of course welcomed many, many newbies to the boards.

    The boards occasionally go through a “bad” cycle, when the trolls try to create an unwanted presence. I don’t know about others, but I wasn’t aware that the forum was under attack by trolls recently until of course the mods brought this to everyone’s attention. However, I was well aware of the tone used in many of these questionable posts was most certainly not in keeping with what one would expect on such a highly respected forum regularly visited by people from all over the world.

    You see, just as the mods recommend, I (and other regulars) try to be vigilant and ignore these questionable posts and tend to avoid reading threads that, in my opinion, are discussions that I personally would not want to get drawn into. Unfortunately this type of “troll filtering” has a downside in that occasionally legitimate posts from newbies can be overlooked in the numerous murky posts left by the trolls.

    I would stress that newbies are NEVER deliberately overlooked, but during a troll attack the chances of overlooking a post from a new member must (in hindsight) unfortunately have increased.

    Sometimes, I come on the boards to specifically reply to a thread or PM someone and therefore will log on and straight off again, not reading any other thread/post. This, in reflection, may give the impression that I may have ignored a newbie who has just recently left their first post. But in truth, there are times I simply just don’t have the time to read new posts. I would apologise if this practice causes offence, this is never my intention.

    AUK is a wonderful forum rich with information, support and warm friendship. I am afraid I can’t see the forum in any other light. And who do we thank for this – no, not the moderators (who do a fantastic job by the way), but everyone who contributes positively to the forum.


  • I think this board is great, with any messageboard it always appears there is a clique. because people who have been posting for sometime know each other and of course have discussions and refer to things that new people may not know about them just like when you meet a group of people that already know each other in real life. I understand exactly what Bex means, people who you have met in real life who have been through similar things as you, you immediately have some sort of bond especially when you also have other things in common. When I meet my friends who have the same eye condition as me I feel like this, there are some things we don't have to say to each other as we just know.

    I think everyone on this board has been really welcoming and people were so helpful to me when I was struggling last year. I've posted a few times and not got replies but thats the way of these things, if people don't have anything useful to then there is no point in them wasting their time. People are also quite ill and it can be difficult to catch up with messages especially when there are lots so it may take some time. If you don't get a response here ring up the lovely advice line, they have also been fantastic when I've phoned them about stuff. I feel a lot more reassured being able to post here, as well as using the other services Asthma UK has to offer. Its helped me be assertive and ask for the right things at the doctors and I'm sure I wouldn't be as well as I have been over the past few months if it wasn't for that.


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