The valuable AF forum has become off topic. Controversy over Covid is stirred for the sake of it, as a platform for mistrust.
Misinformation is given under the “just my opinion” umbrella. When this predictably upsets others, and discussion becomes negative, the posts escalate, are not moderated and the mistrustful fearful cannot understand how they upset others. I know some of you enjoy what you seen as the free floating discussion, exchanges of opinion, but which to some of us is no different than allowing climate deniers airspace on the BBC. It feels impossible to walk on by.
I have a background in research and in the NHS and I can’t stand this misuse of a valuable AF space. So I am leaving (once I have figured out how!).
So thanks for all the highs and lows, the useful facts about ablation and anti coagulation and vagal manoeuvres and midnight terrors when the heart rate is over 200. Thanks for swapping notes about rhythm control and rate control, alcohol intake, eating too much, sleeping too little and exercising or not. Thank you for being there for the last few years as I came to terms with another health glitch, arriving out of the blue. I will miss some of your wisdom very much, and hope you all thrive - even the mischief makers.
I hope we can hang on to the NHS, to all it offers, and to the hearh communities which sustain us.
Goodbye and thanks for all the fish. And the answer is definitely 42.
And sorry for the inconvenience if we are still with Douglas. I have felt like that many times in the last 15 years but keep bashing on trying to keep (most) people happy.
I saw the post but decided to ignore it and move on. I’ve not been on here very long but have found the info invaluable. I do belong to another site on HU which had had its fair share of ups and downs and is often off topic but many enjoy that as it takes their minds off chronic disease.
You could always stay and enjoy the site for what it is, a wonderful source of information, inspiration and chat…….or not. Over to you FaberM.
I'm sorry to hear that you want to leave the forum FaberM. I find it sad that because people don't all agree with your views, you have decided to go, but of course it is your choice and we must respect that. To be honest having been a member of this forum for a long time I find it quite refreshing when we have the occasional off topic post, they are quite rare. We're like one big family here, but as with most families we can occasionally bicker and fall out, but it is soon forgotten.
It's very easy to leave, you just look to the top right of this page and will see a blue box with a Write in it, to the left of that is a tick sign, click on the tick and that's it done.
Why don't you leave doing it for now and see how you feel in a few days time.
Jean
Climate deniers, antivaxers,... Why do I recognize this vocabulary...? Many will recognize it.
Off you go then. that's fine. In my almost (now) 13 years - that's at least 11 years longer than you have been on here - which includes this forums previous incarnation hosted by Yahoo - I have found it more than adequate, it's (mostly) a blend of friendly, informal, factual (where discussion points are supported by reference to national and international research documents). Its had its blend of human interest posts too. Its also had its balance of trolls too. Fortunately it's all been balanced by off topic remarks too.
In my early years on this forum I found a wealth of information which became the building blocks upon which I was able to address my paroxysmal AF and which I still find it a great resource.
I’m happy to agree to disagree with folk and and glad you got some support from this wonderful (on the whole) bunch of people, many of whom I consider friends. Sad to see people leave because of disagreements and trolling.
In my early days I learned more in one day than in 6 years of asking doctors and stay to support those newly diagnosed but also to engage in reasoned discussion. Sad that now seems to be impossible without splitting and name calling.
I’m not a COVID denier or anti-vaxxer by the way, though some how I seem to have been lumped into that category by some who seem to suffer categorical errors of thinking.
CDreamer you demonstrate admirably how to hold an alternative point of view, state your case and then stand back. You do not feel the need to convince others to hold the same view. You also have the grace to quietly stand your ground if someone insults you, without retaliating in kind. Admirable!
I’m so sorry to see you go. I hadn’t logged into the forum for a few days so was quite surprised today to see what has been going on. I hope perhaps one day you might chance coming back as I’ve always found this a very helpful and supportive group and it is still quite rare for some posts to be of the nature they have been, during the past couple of days or so.
All the very best to you in your AF journey and stay well.
like BobD I have been around since AFAs inception and like Bob and Jean have felt the same way at times. I don’t post often but read everything that is posted. Some posts have upset me, angered me or made me cry. Others have encouraged me, educated me and made me laugh. If posts causes friction or gets hijacked then I either skim through or just bide my time. Eventually things calm down. It’s sad when someone feels they have to leave but that is their choice. Maybe loiter in the background for a while, which many do, or take a break until say the New Year and come back refreshed. I wish you well in whatever you chose to do.
It's HOW the argument is conducted John, not the topic. These threads complaining about the threads themselves got really bl##dy over the weekend and people were just putting the boot in. It was honestly quite shameful. And it was several members, not one. So, yes it's upsetting. Not enough to make me leave unless it happens on a daily basis. Not saying btw that you instigated this with your OP about dosage since you're not in control of how others respond.
this site has really helped me cope with my AF. Just feeling part of this community helped me feel better. I was so happy whenever anyone responded to a question I had and I am so grateful to everyone who took time to reply to me. I will be staying!
It's about human behaviour is how I see it - not the topic itself. Also the motivation, not the topic itself. Some topics have started to carry a charge because historically thee have been heated arguments and upsets over them. As humans we tend to look for 'danger' and for some people, digging into any arguing about the hot topic is one way they address it. I believe its a form of fear that drives some to insist that their point of view be accepted. This leads to aggressive behaviour. Others then respond to that aggressive behaviour. Pretty soon the main point of the topic is lost and a free for all f exchanging insults ensues. That's what we saw across the weekend. It's sad, but it happens in all areas of life.
I have noticed that if the post has a negative flavour or the instigator seems to want to pick over a point or 'make a point' as opposed to sharing information for genuine discussion - these are the posts that quickly become unpleasant. But we just have to notice that and either scroll on by or put in a more reasoned point to hopefully add some balance.
Youre right Singwell. I will now not get involved with comments which have no advice or questions on afib and will ignore them. I am on this forum to get help if possible and give advice if it's of some use.
Spot on. The post from Hidden yesterday, I actually agreed with, in part, but then the point got lost when the person started a series of vitriolic responses to other members, which wasn't called for. That didn't put them in a good light and, as I say, the main crux (as I could see) of their post just wafted away as all the focus was then on their behaviour.
Thanks for your post. I feel exactly the same way. It’s not for me. However this forum has been so useful, I’ll try to ignore deliberately incendiary posts (as I believe they are) and focus on the sensible, genuine ones. But I think that misinformation is dangerous and can do much harm.
Is this post, in itself, not off topic? So, I’ll ignore it and move on. If it isn’t about AF I won’t be considering it’s content. Can’t be having people who have fun, nor those who bring a little levity into our sometimes worrying, anxious lives. 🤣
Dosen't take much to confuse me, but the main topic tonight was way off topic, that's cool, What confuses me is perhaps who puts up an" off topic " if it's accepted or not.
”Misinformation is given under the “just my opinion” umbrella.”
Surely, if someone states that something is just their opinion, then *by definition* they cannot be giving out misinformation, since they are not claiming factual status for what they are saying. If I say, “it’s my opinion that the Covid vaccination caused my hiccups” then I am not making a factual claim about the vaccine and am not providing information or misinformation (other than, indirectly, the fact that I have/had hiccups which is not, presumably, controversial).
“I know some of you enjoy what you seen as the free floating discussion, exchanges of opinion, but which to some of us is no different than allowing climate deniers airspace on the BBC.”
I would argue that the two things are quite distinct. Climate deniers make *factual* claims which are not supported by current science; however; those expressing opinions about AF, whilst these may not have much/any scientific support, are not making factual claims (as defined above). It makes all the difference whether one says “it’s my opinion that the Covid vaccine causes hiccups” (which is an acceptable expression of an opinion not a factual claim) or “the Covid vaccine causes hiccups” (which is a factual claim).
If someone makes a factual claim which you think is incorrect, the response should be: “What is the source for that claim?”; “Which peer-reviewed medical journal supports your claim?” etc. . This places the burden of proof on the one making the claim.
Pretty much what you said. Hearsay, innuendo, opinions, and "have it on good authority" are futile when trying to make point, or make others aware of "facts" . I always err on the side of checkable, peer reviewed scientific or medical data. If one feels the data is skewed or incorrect, then one must propose a correction or alternative that is also peer reviewed and scientifically valid.
But having said all that, I have 4 grandkids and 2 labrador retrievers, so science and reasoning are off the table..."do NOT put that fork in the outlet!" ..."stop licking those stitches or i'll bring out the *cone of shame* again!" "he ate what??"
Yes I agree, the term misinformation is often MISused.
I would put forth that a certain former President who shall not be named, would often say that "many people" are saying something, as example. He would not usually directly claim anything as fact or opinion, but he would put forth, in a position of authority, that he heard drinking something or this drug or that drug might have an effect on a Covid infection as many people are saying it will, and people tried those things and some were injured by this.
Regardless of being in a position of authority, I think when you are stating something, whether you verbally claim it to be an opinion or fact, in practice it does not matter when the context is that you are using qualifiers, as beach bum stated, "have it on good authority" - or "many people are saying" for example, as proof of some conclusion.
If someone states: I heard x had a bad reaction to the Covid vaccine. Many people are saying that they had this reaction . This person in some position of authority has said that they have seen many people have this reaction. Therefore I refuse to get the vaccine as they often cause this bad reaction. This is my decision/opinion.
They are creating propositions to give credence and to support the conclusion. This is of course in actuality an invalid argument, however, we have to accept that it can have a misinforming effect on the reader as the propositions will most certainly be taken as valid by some portion of them, and (mis)lead them to the same conclusion.
Certainly I am not saying people can't make these arguments, they are free to do so - and they often do. If only it were the case that all of us needed to take a required logic course in school, then maybe we could completely disregard someone making such illogical arguments, as we would know they are unlikely to cause any harm. However in reality, it does have some misinforming effect on some readers.
It is also worth noting the difference between the definitions of misinformation and disinformation. Misinformation is incorrect or misleading information, whereas disinformation is created to be deliberately deceptive.
surely if you wanted to leave would you not just leave? It’s a bit like constantly telling everyone you don’t like Poundland so you shall not be shopping there. Also you can choose to not be vaccinated without being anti vax and you can care about the planet but not believe there’s a ‘crisis’ (a word that’s way overused now) without being a climate denier. As they say, not an airport, no need to announce departures.
I was upset on another help site after I asked a question about herbal remedy’s for afib, my email was full and overflowing every single day with people telling me how silly I was but I was only asking a question.. so I left. I didn’t post I was going, I just left.
excellent post. Likewise I have found great advice, companionship and comfort here. I have also been told that I have "caused my own afib" and "undone my EP's work" by opinionated and rude posters . I know now who has an axe to grind and who is a stirrer and therefore who to ignore! (None of the three EPs I saw at Papworth agreed with said posts and told me they were talking rubbish)
I can recommend the Facebook atrial fibrillation association pages as being much kinder places to hang out . On the plus side I have made two lovely 'forum friends' who have been a source of great support to me, thank you JoBristol and CTblood.
Who decides what is disinformation? I don't agree with your views on climate change, i think its somewhat overhyped,but i usually keep my views to myself. That said what's wrong with off topic conversation, it would be boring if it was about AF and nothing else. Go,,, your negativity won't be missed,but you will be hard pressed to find another site as good and friendly as this one. No forum is perfect but this one if brilliant
I"m a fairly newbie on here ( coming up 3 years) I've found the support and information on here invaluable. TBH when posts start getting their knickers in a twist I scroll on by. I only tend to comment when I can offer some support or information to help others in a similar situation. I don't really understand why the original poster has singled out a particular subject to be offended about when they could just ignore it if it's not to their liking.
I wouldn't leave just yet Faber. Why not have a couple of weeks 'off' and see how you feel then. I think there is to much valuable information here to just walk out of the door. Just scroll past threads that are not of interest and read those that are.
I wish you would stay and just skip by the nonsense. I too got such valuable advice from fellow AFib sufferers and particularly appreciated the wry level headed mostly British way of liking at life’s difficulties. We must let “ bad money drives out good!”
The subject of "misinformation" is a tricky one . Who decides what is misinformation? . As far as medical science is concerned the consensus has continually been overthrown. If that were not the case we would still be bleeding sick people ,further weakening them and treating people with arsenic and mercury.Doctors would still be delivering babies with unwashed hands after cutting up dead bodies, leading to mothers dying. On a more recent note heart attack patients would be condemned to ( damaging) strict bed rest for 6 weeks and ulcers would not be treated with antibiotics for h. pylori. In the last three instances the " mavericks" who suggested a radical change in approach were badly treated by their consensus clinging colleagues who tried to censor the innovations they were suggesting. Poor Semmelweiss was confined to an asylum where he was beaten to death by a warder. The cardiologist ( Levine) who in the 50s suggested that MI patients should sit in a chair for 1-2 hours a day was greeted on one ward round by colleagues and students with a Nazi salute! And the Australian doctor (Marshall) who discovered that stomach ulcers were caused by h.pylori and could be cured with antibiotics was treated as a charlatan by the gastroenterologists backed up by Pharma who were making over a billion a year on treatments like Zantac. It took years to get this antibiotic treatment accepted during which time patients died of stomach cancer as h.pylori infection can lead to this too. There have been drugs that have been withdrawn from the market when post marketing surveillance has shown that the risk/ benefit profile is too negative despite being hailed as blockbusters. Science of any kind only progresses in an atmosphere of open discussion . Censorship has no place. Personally I believe that climate change is real and that it is probably partly caused by our actions over the last 100 years. But I would not ban people who argue otherwise from the BBC or any other forum. Let them present their views and whatever evidence they have to back them up. As for posts being off topic I personally welcome them as it makes a change from Bisoprolol dosing and whether or not to have an ablation. The vast majority of the posts here ARE about afib , it's treatment and what a pain in the bum it is.
As usual, your points are brilliant. When people try to control the flow of information in a free society, I worry about motives. After years of witnessing this in people, I've come to the conclusion that those who do this are motivated by fear. To venture away from the "party line" can be frightening for some, and understandably so. My instinct is to comfort such people and reassure them that being open to new ideas will not threaten them in any way, except maybe to expand their thinking. As far as this forum going "off topic", EVERYTHING has the possibility of impacting AFIB- emotions, food, weather, weight, exercise, heat, cold, politics, ethics, and on and on- so it seems prudent to look at everything, and perhaps learn from it. Again, I have a lot of compassion for those afraid to venture out into the wilderness of ideas, and I hope they understand that some of us are going to forge ahead, nonetheless. I just hope the forum admin will be generous and allow civil discussion to continue.
Forums go through cycles just like clubs and other organisations do so we must expect occasional glitches and issues while people get used to the way we like to do things here.
People go through cycles too and can get quite emotional about things for a while but it all eventually comes full circle and the one who seemed to be at the centre of the problem becomes the one defending others.
We have to:-
1. Learn to agree to disagree - without being disagreeable.
2. Learn how to make our point - without stabbing someone with it.
3. Learn how to attack the problem - not the person.
I understand. The same thing is happening over at Twitter (I’m not on there)—they say people are leaving because they don’t want to read certain opinions now that Elon Musk is opening it back up. Personally, this forum has been more helpful than not. It’s obvious it is not supposed to be a medical advice forum, but in spite of off-topic rants here and there, it still mainly functions as a friendly support in the dark of night. I think we all need to develop patience muscles, and just skim over and ignore various replies we don’t like, ie., Just don’t fan the flames. I don’t really care if occasionally someone is off-topic… the discussions flow on by and another, more pertinent topic takes its place. Mainly, we are supported in our AF struggles, and that’s been the purpose all along. Best wishes for good health.
Considering that what has been said to be occurring from reviewing tweets since Musk has taken over, is that trolls and the like are en masse writing tens of thousands of antisemitic, racist, transphobic, homophobic, you name it, tweets - I think it unlikely people are leaving simply because he has opened it up to certain opinions. It sounds like a hate filled nightmare to me.
Chas, You’ll be happy to hear that The Verge reports that that burst of vicious tweets originated from a group of “inauthentic accounts”, likely bots, which Twitter is working to delete. None of the comments came from real people with actual accounts. Whoever was behind it was trying to prove that Elon Musk was changing content standards, which he has not. Yes, some are shouting loudly that they’re leaving Twitter because they don’t want to hear certain opinions… they seem to be TV types who want some fanfare to accompany them on their exit. Twitter isn’t going to suddenly become any more hate-filled than it ever was. It’ll continue to be the same goofy mix of people who just want to be heard. I don’t go there for AF news so it won’t matter to me.
Hello John, for me off topic is the best part of the forum, I believe anything can be talked about, with in reason I guess. My main gripe is the ones who won't listen to any talk about the covid vaccines that have caused problems in some individuals, often severe. For me I like to know the good, bad and ugly, all knowledge is good. I don't like the anti vaxxers comment getting thrown around either, in most cases that would not be true. I certainly agree with what you are saying.
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