I have learned so much here, about myself, about AF, about health and wellbeing generally. I have laughed and cried with many of you and eaten a meal or two with some of you and all because we all have AF. Isn’t that amazing?
I arrived in 2013 ignorant, convinced I would be ‘cured’ and wanting AF well gone from my life so that I can ‘get on with my life’ and in return AF has given me the gift friendship, knowledge, sharing experience and a collective knowledge that would be impossible anywhere else. I would never have heard of ablations or Mini Maze, or the affects of drugs or the benefits of VitD - if I hadn’t read all those wonderful posts and discussed the merits, risks and benefits of them all with you.
I understand that not everyone wants to hear others’ opinions - then why ask? To others who may not want to read other opinions - passing over is also an option.
However, when you report and have other members posts deleted you take away that freedom of choice for everyone who may want to engage in debate and hear others’ views and experiences. If the OP wants to delete a post I think it would be reasonable to post that they don’t want anymore opinions rather than delete without comment. If a member is abusive or contravenes other Forum guidelines, for sure a post should be deleted.
I personally always try to make it very clear that whatever anyone else says or has experience of, including my own, is no predictor of what may be your experience - but people want certainty and with AF - there is no certainty, no predictable outcome, no ‘right’ or ‘wrong’ answer or way of being.
What we do have here is each other to help pick our way through. I have always believed in the group being more than the sum of the parts.
It greatly disturbs me when challenging and asking questions becomes ‘not allowed’. When we only want to hear the views of people who think and behave as ourselves - that is a root cause of division and war.
In my view the internet is perfect for encouraging this which is why I get SO upset when views and experiences different from yours or mine are not heard and considered on this forum which I always have considered to be a temperate and supportive corner of the internet which actually supports and encourages debate of the merits and downfalls of various strategies, or so I thought.
Obviously I was wrong as many people do not want to do that or have the chat in between so for that reason - having spoken my truth - I will now take a break from commenting further.
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CDreamer
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This is so sad and not right at all. I have personally found your posts to always be well measured and both thoughtful and helpful. Please re consider and perhaps the powers that be will re consider their deletion policy as well ? X
I’m only taking a break to look after myself and stopping commenting further on moderation as I don’t think it’s helping now. I’ve said my bit. Thanks for the kind words. Take care.
Well said, CDreamer and I wholeheartedly agree with you. There seems to have been a change on the forum in recent times and sadly, it isn’t for the better. Like you, I’ve learned so much since being on this forum and have read posts from those who may not follow the mainstream approach with interest. A great deal will be lost, I think if this trend of intolerance and closing down of posts that don’t fit the “narrative “ continues.
I understand why you might want to take a break but do hope you will return and continue giving the community the benefit of your thoughtful and considered replies. TC
Very well said CD. I do hope that your absence will be just a short one . You are such a font of knowledge and wisdom that the forum will not be the same without you .
CDreamer, please don’t go! I’m a relative newcomer on here, but I’ve really valued your posts and replies, and your reflective way of looking at things. The more that thoughtful people are put off posting, the worse for the forum. I agree with you so strongly on this - I want to hear all sorts of views, not just those that tally with my own. Those that don’t resonate with me, I can ignore. As a newbie, it’s so important to have people like yourself here, who dare to challenge. Please rethink.
Well said CD, I agree with every word you have written. In fact I may well join you in taking a break, because I too feel annoyed about the pomposity of some on this forum who believe that what they think is right and are not interested in considering and debating the opinions of others. I love to hear what others have discovered on their AF journeys, no matter how strange it may sound.
To me you are the most common sensed and informative person on this site. I have always valued your opinions and you will be greatly missed while you take your break.
JeanJeanie - Your posts and those of CDreamer are extremely useful and often comforting. Please, both reconsider. Don’t let a tiny minority affect the reassurance and experience you both offer to so many on this forum.
When you are suspended from posting without any warning and it takes 2 days before you get a response as to why you can't log in, then you're told you're suspended but they won't tell you why just add the "Guidelines" to their email, you know that fairness and equity have gone. I still have no idea why! I continued here because I value the advice from those with experience and because I want to help when I can, and there isn't another forum quite like these but I was not happy to treated in such an insensitive and judgemental way. Enjoy your time out, you are a valued asset ❤️
A lovely, thoughtful post CD. Whilst I fully understand the reasons behind your decision to take a break, you will be sorely missed with your much-needed input to the world of AF.
Is there, please, a tea, or something else natural, that might help me resolve the addiction of tis forum. I have tried to leave several times, mainly because of the censorship, but always come back and spend hours a day reading other's posts.
There is one thing I have to admit - I have learned A LOT here and am very thankful to anybody that has contributed in any way!
you have helped me so much over the past few years…
question: are you 100% sure that the post was removed by management….?
Do you know that errors do happen because it is easy to hit report on a post unknowingly… I have almost done it before myself when on my phone… is it possible that it was reported by mistake?
…I have missed a lot of this I’m just getting caught up… And miss some details… Do you think it was for Content reasons that they removed it? Can you tell me what it was that you think you wrote that made them remove it (or will they remove your reply? ….
Moderatos need to pay attention…
Without us, their contributors.. they wouldnt have much of a Website…. !
I think we can now safely say and assure all it was not removed by moderators. Question was asked on previous thread and Tracey confirmed it wasn’t taken down by Admin.
Don't stay away too long ! Your posts and replies are always very interesting. Like you when I joined I knew almost zero about my condition and thanks to this forum found out about ablations - something my cardiologist kept under his hat preferring to keep me on meds and telling me there were no other options . This forum stopped me googling for answers and worrying by myself. It was so reassuring to exchange with people who knew what I was talking about and could help me.
On the bright side if it was the OP that took down the the post then it's in a way better than censorship from the moderators but disappointing all the same.
Totally agree, but I would add that those who report are responsible because it forces the hand of those who have control of a group to act or react. There is far too much of this going on today , our once valued freedom of speech in the UK has gone and most are frightened to say what they really think for fear of retribution in one form or another, however there has to be 'rules' in place for groups to successfully operate and they should be a safe space for all, free from any kind of intimidation and all that this entails so group 'facilitators' have to have guidelines to follow BUT these have to be reasonable and easy to have in place. I actually run a dog group on Facebook with over 4,000 members and I wrote the guidelines with fellow admins and all members are asked to agree to these guidelines when they join. Rule of thumb, if someone writes a post and you don't like or agree with it, move on etc., and if there is any over reaction that member is politely removed from the group.
In conclusion, this group is a wonderful and well run group in the main, a great source of valuable information with some excellent contributors, such a help for people who are struggling with diagnosis and well being and long may it continue. If posts are to be removed maybe a discussion as to why it is thought inappropriate could take place between Admin and postee in that way they would then know rather than be left guessing as to why their post was taken down.
On a personal note, thank you CDreamer for your time, given freely and always of tremendous value, don't stay away for too long but yes, take time for yourself huggggs
I agree, it would be helpful to know what you done, especially if you have made several posts! This is what I received "Unfortunately, your account has been reported as some of your contributions have been perceived as inappropriate by your fellow community members. Therefore, we thought it would be a good idea to remind you about our Terms of use - Acceptable Use section, ..." Unhelpful and how do you avoid doing it again? Freedom of speech is very much under threat and everyday another freedom is eroded, curtailed or just removed! Could they not have added "this is what we considered to be against forum guidelines ..." Also the use of "several posts" suggests I've somehow run amok on here! Anyway, I must forever watch my Ps and Qs, there are enemies everywhere 😎.
Hello CDreamer. When these recent issues of posts being deleted arose, I was in the midst of having an ablation and all the preparations and healing time that goes with this. In other words I was very focused on myself out of necessity. But there wasn’t a day went past when I didn’t tap in to the forum - it’s my lifeline. I was aware of some trouble but not able to offer support or begin to understand what it was all about. so I just want to say that I agree with absolutely everything you’ve had to say here and to let you know that “CDreamer” is one of those names that shines out for me in my daily connections with the forum. As a relative newcomer you are one of the wise ones.
There is a lot that I don’t discuss on this forum in relation to recovery and healing. For instance practices such as “talking to my heart” and “coming back home” to my breathing and to my body could be read in the wrong way. I have learned over the years that people can feel threatened simply by being met with different approaches. And there are those people who find ambiguity and things that don’t fit their own system almost intolerable to bear. I’m so sorry if I didn’t catch on to what was going on here. When similar issues of censorship arose on the British Heart Foundation forum I waded in with my support, but got worried about the abuse being thrown at moderators as I think they try to do their best in an imperfect system and it was so unhelpful. It was really sad because people were turning on one another and a whole group of valued members eventually left the forum.
I’m therefore relieved to hear that you’re just taking a break from comment and not leaving us! This AF forum is family to me and my first go-to every morning. I have learned so much in this past year from yourself and everyone else on the forum including those whom I disagree with.
Please take good care of yourself, enjoy your break and do some nice treaty things and be back here soon! 😊
I am so sorry. Have not been on here for a bit because I have a lot going on at the moment so am not at all sure what it is all about BUT as far as I am concerned too many people nowadays are frightened of speaking out and being cancelled for what used to be mainstream opinion. Where is the tolerance of yesteryear? For instance I am a woman, a mother, a wife, and def female. What other people identify as is not my business but as far as I am concerned there are certain spaces, i.e. hospital wards which should be female only. Obviously ‘hate speech’ i.e. urging others to hate or violence is wrong.
Readers have the option to move on or not to continue reading don’t they?
Algorithms now seem to concentrate opinion and sometimes people don’t read a balanced viewpoint.
When I do have time and am in need of a bit of comfort etc I find this forum a very great help.
Completely agree CDreamer. You put it so well. I have felt gagged since this happened. I'm still not sure what has happened or what I have done wrong personally. I read the rules sent.... And they are long. Are we not allowed to say anything outside set concepts?
Forums always have differing opinions but that is the nature of a forum..... Such differing views can be and often are enlightening. They can lead to a great discussion.... Helpful to all. I feel this has now been lost
I too have been feeling I should withdraw. I feel like I've done something wrong but don't what that is? I'm confused by it all tbh..... And shocked. Recovering from my op which hasn't been straightforward I don't need the additional stress or anxiety.....
Hi CDreamer, I can see why you’re upset with this and agree with all you’ve said totally. You’ve always been a voice of sense and we’re one of the first to answer me when I arrived in the forum like a frightened rabbit with the afib diagnosis . Thru folk like you, Bob, Jean, flapjack, I learned pretty quick the afib wasn’t as scared as I thought…this forum needs you .
I don’t understand this censorship …..the Oxford dictionary states a forum is where people can exchange opinions and ideas on a particular issue……and this is a forum!!!
Thank you for your well researched and thoughtful replies. I have learned a lot about AF from them. Please don't stay away too long. My best wishes to you.
I have always found your posts informative and so helpful to others. You are an absolute asset to this forum because of all your knowledge and experience. I am sure you are held in high esteem on here more than you realise. Thank you for all your help and hope you don’t take too long a break because you will be very much missed, not to mention needed. Take care.
I too will miss your helpful comments so don't stay away too long.However I am struggling to understand who removed your posts. If it wasn't Admin what do you mean by Original Poster. Do you mean you replied to someone's post, they didn't like your reply so they deleted it. I wouldn't know how to delete someone's post.
I think CDreamer was talking generally as well as about a post that had some interesting comments but the OP deleted. Quite a few were asking about this a couple of days ago. CDreamer explains this further up/down in this thread
Since finding this helpful site around five years ago, when AF was initially diagnosed for me, my first task every day is to read all of the new posts. I have learned so much from the wise and experienced posters, especially those, like you CD, that take the trouble to respond regularly. I have sent a few other AFers in this direction too, because, frankly, most of the medical fraternity are ignorant about the condition and follow 'guidelines' slavishly. I am fortunate to be in permanent AF now and have slowly weaned myself off most of the meds, except the anticoagulant, and try to eat well, exercise, and live a very normal life again now. But that is thanks to the knowledge that I have picked up through this forum, and the remarkably helpful tone of most of the discussions. The odd topic can provoke heated views, but, to me, these are interesting and perhaps challenging - is there a different way to consider a specific issue? CD you are an important contributor with sensible advice and a grounded sense of your value. Don't stay away too long, please
I haven’t been in this forum for such a long time but see that voices such as yours are so valuable to everyone’s healing journey. Wether they choose to follow the things that have worked for you or carve out their own experiences and in the process learn about what their bodies are trying to communicate.
I’m thankful for people such as yourself, that give so much to others to help them on their journey when so many are confused and in some cases petrified when they are first diagnosed.
As we know how damaging the impact of stress is, any voice or understanding can calm our systems.
I’d really appreciate some feedback as to your journey.. and the things you’ve tried, but uncensored, are we able to connect outside of this forum?
I would really appreciate any words of wisdom. Thank you
Please don't stay away too long. I sincerely hope that those here who have been reporting and getting posts deleted because they did not like their contents or the responses to them realise that they are risking the withdrawal ( possibly permanent) of members who do the most good like yourself and Jean - especially in reassuring newbies.
We'll all look forward to the time you feel ready to join in again , but I'm sure we all understand that you feel you need a break.I quite often take a break from social media , and have regularly done so on forums when certain phases of activity are happening that aren't very positive and are winding me up.
Let's face it. We come here for the good of our health not to make us feel worse . With AF if we find taking part is building up our heart rate or becoming stressful it is better to step back for a little while.
Agree with what you say. This forum is a brilliant one and everyone’s comments are important unless, as you say, they are abusive or conversation turns a bit nasty
I actually missed quite a bit as to what is going on as I have been in hospital having a pacemaker (which for such a common procedure these days took a while to sort itself out) so I was disappointed to just read that you and possibly Jean may take a break. Bob has been a bit quiet lately too I think and I’m sure none of us want this forum to go “belly up”
I think (I’ve missed the threads) that you are responding to what might be seen as a kind of pedantry and officiousness of one, maybe two, members? I’ve had the same from one individual and it all-but put me off using the forum right at the start of my troubles. But I pressed on. As I hope you will so soon.
We don’t always see eye to eye on health matters thanks to my overly rational outlook, I suppose, but I’ll add my voice to others here and say that I value your experience, knowledge and patience a great deal.
Agree with you completely and to add remember we all have heart conditions so CHILL we don’t all have to agree on everything and hearing different opinions is what makes this forum worth being on and I have no idea what there seems to be a need for censoring any opinions + please don’t stop commenting CDreamer !!
I have learnt everything about my condition from this forum and very little from the doctors and experts. You, CDreamer and Jean have been particularly helpful. In fact if it wasn't for you and all the lovely people on here, l don't think l could have kept going.
Thank you CDreamer for this thoughtful post. Posts like this that are able to express concerns without any 'hook' for criticism and judgement are not easy to frame. It's always tricky when an OP deletes their post when others have been engaging and the conversation might be useful to members. In some FB dicussion groups this is not allowed. But I agree that in a forum like this, individuals must have that option.
I hope your thoughtful post will encourage all of us to communicsate well here. We're living in a time when despite so called advancement in communication possibilities, we're in danger of forgetting the skill of true, non polarised, non judgemental exchange.
May you get the mental quiet you need just now. I appreciate your posts and many many others od our regulars.
This forum has been very helpful and meaningful to me in affording me the opportunity to learn from others and offer insight to others by sharing my own experiences.
I believe that as long as we are truthful, above-board and forthright about our personal experiences with Afib, in relating ideas, concerns and conjectures about causes, medications and treatments and other individual responses to it, there should be no reason for censorship.
It is important to be able to compare notes among the standard medically established approaches to treatment of Afib and the real-life successes, problems and issues experienced by patients.
All who read the forum understand that we are simply sharing our stories candidly and contributing to a body of anecdotal, personalized responses to life with Afib, and that we are not purporting to be medically trained doctors offering professional advice.
I have read very little in the way of abusive responses and over-bearing or subversive assertions on this forum. We are all adults and can tolerate differences of opinion and styles of discourse as long as fundamental decency and respect are present.
Well stated. I continue to read Afib related posts on this site, however, I too have taken a break from responding and will continue to do that. I was hoping I would be able to help others but unfortunately it disturbs me that any views of people who think and behave differently from the norm, media or medical community when challenging and asking questions becomes ‘not allowed’ or "censured."
I hope some people are helped from this site and chose to "think outside the box." Remember, each person is an individual. One treatment may be good for some and not for others. Thank you to those that posted over the years and good luck to those still affected by Afib.
Although I rarely post, I do check in about once a week - the contributors to this forum have been a great source of information to me and have helped me navigate my way through AF, especially during lock down days. So I’m very sad to learn of the direction of travel which stifles debate. I’m with you CDreamer, and concur wholeheartedly with Three Cats, Jean Jeannie and others who have expressed support for you. Enjoy your break. Thank you 😊
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