I thought this forum was here to inform and help people with the many forms and problems of A F. It now seems to be a about anything ,but that can we get back to what it was and stop all the other stuff
Health : I thought this forum was here... - Atrial Fibrillati...
Health
Written by
Jennyquilt0
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55 Replies
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BobDVolunteer
Couldn't agree more.
I think many other concerns re. health/not afib. are creeping in at this time. But I think this will diminsh when Covid passes.Should we not try and be a little understanding as some posters may be alone and have nobody else to turn to?
Sure but any concerns about, covid, vaccines and AF should be referred to the official AFA video explaining it all so there are no mistakes in advice. Remember the prime directive is that this forum does not replace your doctor or medical team and we MUST NOT advise regarding taking any drugs. .
Thanks BobD and to all helping here. Although I haven't seen the trigger posts that seem to have set this and other conversations off I think the change is due to fear and uncertainty in these times. We're human and we're manifesting that fear in our communications. Hopefully it will pass as the UK situation stabilises. A lot of unrest in the world in general at present. That's how I see it. In the words of the wonderful Sandi Toskvig, let's be kind.
I am so busy I think I have missed something earth shattering here.😕
CDreamer in reply to
I don’t think you did John, it was described as a storm in a teacup by one contributor.
In the last 4 days 30 posts were asking questions purely about AF, 3 were similar to this post which attracted a LOT of difference of opinion. I think you were one of the 147+ contributors on one such post.
Unfortunately poor Bob is getting it in the neck from HU/AFA Admin because there were a number of complaints - who knows from whom or why? And many people are becoming anxious because of a threat from HU that they would close the forum down. Hence the pleas for sanity to return.
in reply to CDreamer
Thanks CD,I'm still a little at sea but then I am continuously working at the moment and by the time I get home in the evening I've better things to do than get on my computer. So as and when during the day when working I rely on my smartphone .... not the best device to scroll through posts and read everything carefully.
That said, I still cannot recall seeing any threat from HU or AFA threatening to bin the forum. Nor have I seen anything that reminds participants of whatever code has been subject of a complaint. Not that it is the best forum either, certainly back in the day in a galaxy far away I thought the old AFA/Yahoo forum was better than this .... still, it is what it is. Maybe HU and AFA moderators should become more proactive in policing the various codes that apply if they are becoming so utterly responsive to complaints. Then an innocent party ( like BobD) could be bypassed. Surely their IT systems are advanced enough that they can relate a user name to an email and deal with the participant more directly.
John
CDreamer in reply to
Personally I wouldn’t favour a moderated forum simply because IMHO Moderators start to become dictators. I don’t think it’s about the technology it seems to me that some people have a clear idea of what they want from a forum such as this and when they don’t get what they want - the whole community suffer the fallout.
Simple answer is people stop complaining and reporting UNLESS there is a serious breach of Forum Rules.
For @John6
healthunlocked.com/afassoci...
Totally agree. I can't say I have ever seen anything here that I would dream of complaining about. If I disagree with something I might post a reply or I might not! But complain - no.
Jalia in reply to
Fings just aren't what they used to be John ! 🙄
Everyone likes a chat and happy to engage with anyone, and offer any reassurance, help or advice if pertinent, I fully agree with you it needs to keep its direction.
Hope your all good pal
Not so bad mate how's tricks, nightmare with all stuff going on again eh.
Yeah mate, but used to it now i just stick to a routine now which keeps me busy for the day, but how's thing's with you is the heart behaving? mine been better but played up yesterday i think it's just one of those things i just got to accept now that it will play up here and there
All good mate thanks, keeping the walking going and the odd bit on the bike, but it's baltic at the moment, living by the sea is nice but bits nearly fall off when out in this weather 🤣.Still get occasional little flutter, but don't take any notice of it, don't think all the stress of late helps with the country situation as it is for anyone. Think a lot of people are feeling on edge and tetchy, roll on summer.
Had your ectopics settled a bit more,hows the weight loss going, I've dropped another 5lb now, more like a small village than a town now.
Fantastic News about the weight loss pal, keep it up......ahhhhh mate you must be freezing off your nuts living by the sea hahhhahha, yeah my ectopics are better thanks for asking mate been taking these 3D Vitimins called Nourished that seem to help and still trying to lose weight and eat clean, but as i said i was just sitting down yesterday on my laptop and my heart decided to go for a little run, i just can't get my head round why it does that, how much you weigh now pal?
Down to just under 18stone now Pad , not bad for my gigantor 6ft 3in frame, "gorilla on a penny farthing" as the lads call me 🤣. Maybe a bit of flutter mate I get that the odd time, it's probably vagal triggered by position or movement, it's what I put mine down to. I just immediately move and tense and it goes off most times.Been taking Vit D3 and zinc gen quite a while and must say it definitely has upped my immune system and I feel more energetic.
When am out walking by sea I look a big wookie with my Canada Goose parka on haha, revenge of the seive 😉
HAHAHHAHHAHHA brilliant, i think you hit the nail on the head mate, i think these runs we have are 100% vagel related that's motivated by posture movement 100%
18 stone brilliant pal, you must be well happy with that
Another stone Pad and il be happy , just steadily coming off and getting fitter so happy enough with that.
you totally off the beta blockers now?
I am Pad, take nothing at all now, am sure the bisoprolol was causing some of the weirdness going on with my heart, it's been much more settled and I feel more energetic and happier since I got off them in April last year.
Do you guys not have each other's email for your private conversations?
in reply to WallMatt
They don't need to .... there is a facility already for private messaging. Maybe they can't find it and/or don't know how to use it if they are not 'IT familiar'. As I have already said I prefer the old Forum. the general format of this one is and/or could be somewhat convoluted. It can also be a bit " browser vulnerable". This is something that has cropped up over a long time where posts do not appear on any one participants computers. Not often but it has occurred and I for one have found a number of issues with HU depending on which " browser" I use. Not best impressed !John
To be honest I didn't realise how much Bisoprolol affected me being on a small dose, until I tried coming off. I was only on 2.5mg and it was a nightmare withdrawal period, cold turkey just didn't work for me and was hard enough titrating over a few months, just glad to off them.
How long where you on them for?
About three years I think mate, when I had last fast tachy episode they put me on 7.5 first, was like wading through mud.
There is a bit of mission creep in this forum, perhaps we need to create different sections for social/supportive, and purely medical.
At least it is generally polite thank goodness.
I’m not clear as to what you mean about ‘a bit of a mission creeping in’?
Maybe it would be useful to poll members as to what they want from this forum because with 21K people, it is going to be inevitable people will seek different things.
Having sections is not a bad idea - I know the Healthy Eating have sections - can’t work out how it works though 😕.
There is a plethora of facts and education on the AFA site but for me, the value of this forum is just being in contact with others who have similar. I’ve received a huge amount of support from people here and I would hate that part of the forum to be sidelined.
Maybe we could prefix headings on our posts eg:- Information wanted; Support Please; Question: Discussion ????
This isn't a bad idea. On a FB social learning group that I run we have Units. Personally I think it would be important to have once called Help Please! But it does require work on part of moderators to collate posts in units and it also restricts somewhat the flow of conversation which allows for interesting subtopics to develop.
Maybe we could have tick box headings and the opportunity to filter posts.
I am now uncertain about this site discussing related issues such as circulation in lower legs etc which I have been taking part in, I thought it is related to our heart problems.I don’t feel comfortable engaging with others with similar problems if it offends some members, I will discontinue.
Up until now a wonderful a forum, feeling rather down now.
Does anyone else feel this way that only AF related problems can be discussed, as to me some seem to stem from the original heart problem.
Indeed some drugs taken for AF such as beta blockers can cause or exacerbate peripheral circulation problems and the idea that if you have a range of cardiovascular problems and you have to think which ones you are allowed to mention is hardly taking a holistic view of health
I also talk about other things and believe that everything is connected to everything else and we are far more than just our AF so I would be delighted if you could feel you were able to continue.
Appreciate your openness and honesty.
I've had nothing but support and constructive advice on this forum. TBH if someone posts something that has little or no impact or relevance to me I just pass on. Different people react differently. One way or another many issues outside our control are impacting our lives. So what if some people seem to be 'off topic' they have a concern and if you can help or inform do it, if not ignore. I would hate anyone to feel that their worries or concerns whatever they stem from are irrelevant and that they shouldn't post.
To your 1st question - who knows? I certainly don’t because many of the posts are oblique and I am not clear what or whom they refer to. I’m a Northerner, used to speaking my mind, don’t mind that other’s don’t agree with me and well able to stand my ground but it seems not everyone else is made that way.
To your 2nd point - my theory was that refusal to engage comes from a place of fear, which we are all susceptible to in these time - along with a year ago, so little was known. Also, all the forums seem to be sponsored by Charities and I suspect that may also have been an issue. I do believe there is a place for such a space to discuss these issues, but maybe not on here if not linked to AF.
I was very taken with the Indie_Sage video - was it you who posted it?
Anyway, thank you to who did as I am now following them on Twitter & YouTube and website independentsage.org as it seems to be the only source of unfiltered information and discussion, albeit there is no facility to comment or participate.
I would suggest that the moderators reiterate/clarify guidelines for posting. As others have remarked, it is perhaps unremarkable that at a time of great national (and international) tension people discuss topics which are not obviously relevant to the topic of the list more than is usual. I would think that this is likely to be a fairly short- term phenomenon. Of course, topics like politics and Covid (mentioned here) *do* relate directly to AF whether anyone likes it or not, and so *some* discussion of the interface between the two is not reasonable.
One practical measure , which is quite effective, is for people who are posting on topics not of interest to some others, is to indicate this in the header. For example: “AF and the government [POLITICS].” Anyone who doesn’t wish to read about politics could then avoid that thread. As I said above, I would expect this to be a fairly short -term problem.
I think maybe because of the times we are living in and people may have more time on their hands it's easy to get dragged into other discussions but if we don't click on the stuff we don't want to be dragged into we can carry on with what concerns us most
I totally agree with you. Soon we will be giving instruction on how to fix your automobile.Frankly I now delete most of the new incoming editions.
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