Disappointed

I had hoped the contributions to the BLF sight would be much more health related in terms of sharing good research information and advice about the range and nature of lung conditions. Seems people want a social networking sight, something I suppose which BLF have little or no control over. For me at this point in time the site is not even close to hitting the research, advice and exchange of knowledge I had hope for, so back to the American sites.

37 Replies

oldestnewest
  • That's a shame, Bigyogi.

    I know there's a lot of banter and friendliness but mixed in with the bonhomie is quite a large pool of knowledge being shared.

    I do a lot of investigating various health matters for myself, as well as gleaning all sorts of useful information from this site, and would love to know what the USA sites cover that this site doesn't? (I have a vast thirst for knowledge!)

    qbjb

  • Hi

    Sorry you are disappointed , some times people with an incureable condition , need a distraction, a bit of humour goes a long way when you are having a bad day.

    Idle chat can take away the feeling on loneliness that lots of people suffer with.

    As regards you main point , if you have information from other sources can you not share?

    The number of improvements, over past few years can be counted on one hand .

    Drug trials, various type of valves for lung reduction.

    Ther as been lengthily discussions on breathing techniques, different drugs, exercise, oxygen theraphy .

    It is community of help and support, with all aspects of how the various lung conditions are affecting our daily life's .

    Rather than leave take a rest , and pop in now and again, anytime you are feeling down or are unable to cope.

    You will then see the value the site as to offer.

  • Well said Flibberti.Nothing wrong with being friendly!!!

  • Thank you Flibberti, there is a lot to be said for social chat when people have just been informed they have an incurable disease. And that is what we offer too isnt it?

  • Well said flibberti ! This site and the members have been a lifesaver for me both with practical help re ambulatory oxygen and love and support when I was at my lowest. Sheila X

  • I do agree with the other replies, this site has a vast array of knowledge, dramas, humour and everything else in between. It is for everyone. I am not bothered by the jokes and choose not to read most of them but everything else is great. Good luck to you bigyogi and I truly hope you find what you are looking for. Take care and stay as well as you can. xxxx

  • Strange because people visit us from the US. I do feel that this site is very important for all people worried about lung problems. It is good that they can come and voice their thoughts to receive advice and friendship. I fully endorse all that has been said. Humour is a necessary part of life and it can help when You are depressed.

    My advice to you, if you feel happier elsewhere, go and join the site if this one doesn't suit you. We wont change

  • Bye.

  • Hi Bigyogi

    Sorry you feel the need to go, especially as you have only been a member for such a short time, perhaps not long enough to notice some of the excellent articles and advice so generously offered by members. I have had lung disease all my life and believe me I am still learning and have gained some wonderfully helpful info and notification of research, not to mention support from members here so generous of spirit.

    One site cannot be all things to all men and we are all looking for different things and everyone can pick and choose. The members decide what they wish to post and we should all respect what is important to each and every person, be that serious or lighthearted. I appreciate your post too is how you feel but it is not helpful to criticise a whole group of folks input, folks who are struggling just as you are.

    I wonder if the American sites are so excellent why you felt the need to try this one. Perhaps you would be kind enough to pass on to us all the helpful information and research which they seem to offer which you feel is missing from here.

    I do hope you have a rethink but whatever you decide I hope you stay as well as can be.

    cx

  • I think the main purpose of this site is support for all those of us who have lung problems. This support takes many shapes including helping each other not to feel alone with our illnesses. Humour helps some people, sharing stories others, seeking advice and help from each other etc. etc. If you want a purely research site then this isn't the place for you though there is plenty of information here.

    I put a question in recently about diagnosis of COPD - whether it should be broken down into emphysema and chronic bronchitis and whether this is important. I got lots of valuable feedback and to me this is an integral part of the purpose of this site.

  • Hi Bigyogi223,

    I completely endorse everything everyone has said, and I too wonder why you come searching the UK if the American sites are so wonderful and give you what you want. How dare you come on this site and criticise it in such a fashion, when clearly you have little knowledge of it. The others have all explained carefully the value of the site. If it doesn't suit you, then goodbye and good luck, but please do not come again unless you have a change of attitude. Honestly, what a flaming cheek!

    I am not feeling tactful today, so that is why I am being so blunt, and I am very protective about this site.

    Huggs

  • sorry you're disappointed MrYogi with our site. Really it IS a social media site made up patients with all levels and types of lung disease, not only COPD.

    Everyone is welcome. The BLF is a charity, I for one am extremely grateful for it and it's members from whom I've learnt a great deal. You may or may not know that our UK health system, the NHS - National Health Service, is on it's knees financially and some people dont get the care they should. It's entirely dependent on where you live. Not all GP's/hospitals/nurses could be called excellent. Some are dreadful.

    Only a very small minority have private health care so far fewer bucks for research over here. We're a tiny island after all.

    Here we can safely share experiences, knowledge, discoveries, highs, lows, joy, sadness, our medical histories & journeys, recommendations. Some get a giggle from the occasional joke. We can take or leave members just as we can in the outside world, it's our choice.

    We are most welcoming to new people, very supportive to those recently diagnosed and I like to think, non-judgemental especially across cultures.

    There are a few boffins here, being scientists though they aren't interested in the chitchat but do give us very useful links.

    You probably wont bother reading this. Never mind, I enjoyed writing it and heartily agree with the comments above - particularly; if you find anything interesting please post it for us. P

  • I love all the wonderful comments everyone has made to bigyogi, and agree with them all too, but I can't help but wonder if he/she will ever read them. x

  • never mind, we did ;)

  • Having just read your profile, it seems its not only this site you hate but also the medicines you were prescribed, and have given up and also the Doctors who have tried to help you. Personally with out these Doctors I and most of the members here would not be still alive, or without the meds. I am incredibly grateful for the doctors meds and site. I am sorry neither suit you, but just think yourself lucky you don't live in a country such as America without the NHS. If you dislike the site so much why don't you just leave quietly why the need to make a post and moan about it.

  • I am disappointed in you Yogi. You joined last month and this month are being very critical. Have you read posts from months or even years ago? They can contain much useful information. This is a forum for all not just Yogi. It is run to accommodate all. I joined an American site before I joined BLF it was reasonably informative but lacked warmth compassion and friendliness all things that help to make our life more bearable. A lot of the time it was moans about having to buy their medication and where it was cheaper. Looking at your posts Stone answered one of your questions admirably as do many here. Good luck in your search.

  • Agree with other posters .

    Suzy 6 above makes a very valid point about older posts. When I first joined and before I had the confidence to post myself , I spent about 2/3 months reading older posts and gained a wealth of information. eg ....PR , flu and pneumonia jabs, rescue antibiotics. ( very little information had been offered by doctors and nurses ) Also gained lots of inspiration from posts about quitting smoking .

    I still sometimes read old posts to learn about things that don't concern me now but may do in the future .

    I am also at a loss to appreciate American sites .......have had a look at quite a few .......and am wary of much of the information because of commercial interests .

    It did cross my mind that the original poster just wanted to stir a bit of trouble...but maybe I'm just too sceptical.

    Anyway the actual effect seems to be that everyone is united in praise of our site . ( can almost feel " hug's indignation " steaming "off the page )

    Cheers Coastal.

  • @Bigyogi223.

    There is a list of topics you so you can choose what you wish to view or not. If you don't like humour or general chat then avoid it.

    As for " exchange of knowledge ", there's tons of it .

    All things British Lung Foundation (261)

    Breathing worries (281)

    COPD (937)

    Different lungs (59)

    Financial issues (77)

    General Chat (933)

    Humour (472)

    Lung Cancer (21)

    New/different (123)

    Oxygen (114)

    Pulmonary Fibrosis (161)

  • Most US sites are sponsored by big Pharma and seldom what they seem. Personally I wouldn't give them the time of day, but that's just my view.

  • Well

    You have been on just over a month and the 3 posts you have 2 have been answered I think in a plain speaking and honest way. you have kindly responded with positive words and it was all from like minded people, that know what you are going though from a personal point not a medical fact? or a medical thesis.

    I have RLD and have found only a few fellow suffers and it seems that there is not a lot that can be done for the condition so it is best to Just live with it. I do loads of research myself and have a broad knowledge of a lot of my problems.

    This site as well as the BLF Helpline are ideal for my needs. Which is to be understood and not judged. I have not had an easy path to get many of my conditions acknowledged by my GP but from our community of BLF HU I have moved forward. I have not been given the news I would of wanted but I am fully aware now.

    I look forward to your replies to the many posts on this thread.

    Be Well

  • I hope you have the time in your busy schedule to read and at least acknowledge the offence you have caused to the very good people of this excellent site.However grace does not seem to be one of your strong points,I shan't hold my breath lol.D. :D

  • Oh dear you do seem to have created a stir. The thing is that some people need this social interaction and you just have to ignore the posts that you don't want to listen to. Personally I wish the site was divided so those people who wanted the sentimental, false bonhomie and joke telling could have it and others who wanted health information and new ideas could also have it. I just filter through those posts I don't wish to read which I must admit sometimes are most of them.

  • Hi Eve3066,

    I would like to take issue with you regarding your remark about the " false bonhomie " people on this site. You weren't calling us false 7 or 8 months ago when you posted 'ALONE' and received 25 sympathetic, encouraging and friendly replies. Bonhomie means good natured, pleasant, friendly and general good heartedness. Are you really calling all these 25 people false? That is highly insulting and offensive, and the people who responded to you, if they have read your above post, must now wonder what kind of person you are.

    Your post 'ALONE' was about how living alone is difficult with your health conditions, and you were obviously at a low point, which we all have from time to time. There are many of us who live alone and have no family or anyone to make us a snack or do something around the house which we cannot do. No one judged you, or was negative to you in reply to your post, so why the need for accusing them of falseness now?

    I understand that some aspects of the site are not for everyone, but the point is that the members make the site, post and answer questions, so there is something for everyone.

    I have received nothing but encouragement and support from the members here, and seriously object to you calling them false. As I say, that's not what you said before, and I have no clue what has happened to change your tune. If you don't want the humour and friendliness that comes through an instinctive understanding of what each of us is going through, then don't bother reading them. We are all entitled to have a moan when things get a bit too much, just like you did, so before making scurrilous accusations just remember who helped pick you up, when you were down.

    I am not being false when I say that I hope you are well, and if you need help again, it will not be denied you.

    Take care,

    Huggs

  • Just look at the number of replies. Everyone here does want to help you. Research may be interesting but does not help the here and now. You get genuine true life experiences, not what the drug companies are trying to sell which might not be right for you.

  • As an American I enjoy this site very much. Personal experience of others with similar health problems is useful no matter how it comes packaged. The principal requirement is that the discussion is active as far as I am concerned. I haven't found any active American online communities for lung issues - are there such?. I follow the site Smart Patient's, which has considerable input from admimistrators, but they deal mainly with cancer. Their lung cancer "community" is not very active so I look at what the kidney cancer community is doing and I have learned much from just this. Best to all (I'm an anglophile I confess.)

  • Bigyogi, if you want to find a post about something in particular, why not click in the green band on the right. A search will come up and you can put your key word in there.

    Also, if you need help with research why not phone the helpline or email them to fins out where you can have the information. Here's the contact: 03000 030 555 or email us - enquiries@blf-uk.org

    Hope it helps toward your quest.

    If you cannot find what you want try to find the scholarly discussions on google or any browser. there's information for patients by doctors on patient.co.uk where you can certainly find detailed information about any condition.

    I hope this helps a bit. I'd thought you'd do the same kind of browsing in the US, don't you? We are a forum for patients, we don't claim to be professionals and a little humour is what cheers life in Britain! Best wishes!

  • Strangely enough Mick I think that bigyogi is actually British , but for some reason seems to prefer American sites. If you look at his profile and previous posts he seems to be unhappy with many aspects of his care!

  • Hi Coastal,

    He is British, but I think he was just stirring, and has his own agenda. He is obviously a Victor Meldrew type of character but unfunny. His remarks are deeply offensive to every member of this site, and is obviously lacking in filling in his time constructively. If he didn't like the site, he should have just left quietly and with no criticism. He is not a genuine person and this site does not need the negativity of this type of individual. We all have enough negatives going on in our lives, without the likes of him adding to it.

    Take care,

    Huggs xx

  • Huggs, I quite agree with you. I think that people who only see black and white and aren't satisfied with it, have a problem they need to sort out differently than through a forum of non-expert in the field of mental problems.

    Are you alright, Huggs. been silent for a bit. Hugs to Huggs!

  • Saw American sites before finding this one, if I had carried on with those I would probably have hung myself by now, they were so negative. Totally opposite to here.

  • I simply do not know where this guy is coming from and I for one am not clamouring for his company.

    I myself come here because I like the camaraderie and for those living alone it is a cosy corner to find company, friendship and a place to be understood and wanted.

    May it always remain so.

  • Right, well that's that then, sorted!!

    Flea in ear and fled without word, so far!

    A rousing chorus of "Goodby-ee" and on we jolly well go lol :D :D tra-la-la :P

  • Ah but they are still a member. Me thinks they still pop in.

  • Hi Suzy,

    Good if he does pop in! Then he can read what we think of his post. Or do you mean he has another name as well. His yogi user name shows he is still a member.

    Hope you are well,

    hugs, and xxx

    Huggs.

    Eve3066 is just as bad though, calling everyone false!

  • Hello Huggs yes he is still a member I bet they both keep peeking.

    Not a good week, I'm fine but problems with breakdowns and a worry time with a cat who has just been diagnosed with thyroid problems and she isn't happy. We are seeing if it can be controlled but so far no improvement.

    How are you?

    xx

  • Hi Suzy,

    Its been a bit of a week of it, I am afraid, and it would take too long to go into just now, so I will pm you tomorrow, if that is ok? The doctor gave me morphine patches and I put the first one on nearly 3 hours ago and feeling slightly strange. I am tired out as well.

    I am sorry, about your cat. What a shame. I knew someone who had a cat with thyroid trouble and it took a bit of time to get the balance right, but they did get there and the cat led a normal life.

    Take care, and I'll be in touch.

    love and hugs,

    Huggs xxxx

  • Yes do please PM me. Take real care. Try and have a good nights sleep. Thinking of you xx

You may also like...