Not sure if ok to post this. I have dipped my toe in the water of a facebook AF group and am quite surprised by the problems people are experiencing which don't seem to be a feature here.On example is people with widely fluctuating heart rate when recorded on devices, 48 to 140 being an example.
Many people feeling constantly unwell or not coping with meds. Many asking re when should they have a pacemaker .
Is it just a different maybe younger, demographic or a parallel universe?
Hi Bagrat.
I hope you are well. I joined a few of the Facebook groups with little luck. I found much of the information misleading and not always correct.
However, there are members here who have had success with them. It's worth a try to see if it suits you and you can always leave the group.
Paul
I am only familiar with the US afib Facebook group.
They do seem to have a younger demographic than here and therefore not as much discussion about pacemakers as here, which seems the opposite of what you have encountered.
As to fluctuating heart rates on devices, like here, some have issues and some don't.
As to feeling unwell and not coping with the afib drugs, I find those are common themes on all afib forums, although perhaps on a forum with older demographics many have eventually made peace with their situation and therefore complain less.
For better or worse, the major difference in the US forum is a bias toward quicker ablations. That's partly due to recent research, partly to how easy it is to get an ablation in the US (often 1-3 months) and partly due to moderator bias, who often lead and influence the group discussions.
And while in general I'm an advocate of ablation, I think the US Facebook group pushes it too much snd too soon for many.
Jim
I'm not a facebook user but wonder if you could paste links to AFA information that we benefit from, and of course the collective wisdom of this forum ... if there's no medical authority (such as AFA information) associated with these facebook groups I can imagine they might go round in circles.
So glad I found this forum ...!
Cat
I agree 108cat. AFA manage the forum to ensure that only medically approved advice is given and sign post members to valuable AFA literature and advice which means it is probably (I hope) more supportive than other forums. HUL do not tolerate nonsense to further control things.
It amazes me how many still look at instantaneous HR measurements while in AF, I know we’ve discussed this before but just to reiterate to others, the instantaneous HR readings on devices are pretty much useless while in AF and it’s the average that matters over 30 seconds on an ECG device or by counting your beats in a full 60 mins.
I’ve never been advised this by anyone officially so maybe there lies the problem with patients not understanding.
Instantaneous readings of 48 to 140 seem quite normal in my experience while in AF and the average can still be in the controlled range below 100.
I don’t do Facebook
Best wishes
I believe the Q's and answers on this Forum are improved by a handful of regular high quality contributors, who influence the rest of us to raise our game thus filtering out some of the 'noise' which may be occurring on Facebook.
Facebook is a minefield of incorrect and inaccurate information being fed by anxiety troubled people young and old! I rejoined Facebook only about 19 months ago and originally joined a number of cardiac groups. I’ve deleted them all. The worst are the PVC/PAC and AF related groups.
I only belong to 3 groups now, all run by professionals and all of whom have people with expertise supporting them so the inaccurate stuff is not encouraged.
The issue of fluctuating HR readings when in AF comes up constantly in this forum and I'm forever reminding people that the majority of devices rely on an algorithm which requires several regular beats in a row to produce a figure. Since AF is irregular, the machine is 'confused' and simply throws up a series of random and meaningless numbers.
I’ve had a lot of experience with running community Facebook groups and pages and after 8 or so years can confirm that it is indeed a parallel universe! There’ll always be a percentage of people who are perfectly ordinary with universal experiences - maybe 80-90% of users but the off the scale experiences, exaggerations, failure to understand, attention seeking people are only a small minority and they are the ones that comment and lead the “debate”. I’m very disillusioned with social media. This forum is grounded and sensible, I don’t need any more.
I believe there is a tendency for sufferers to seek instant answers to try and quell anxieties so Facebook may fit the bill although I'm very sceptical about its use, especially with those who like winding people up, pedants, truth twisters and the like that lurk in its world. The use of AI to harvest and target individuals with what may not necessarily be the correct advice would also be a concern for me.
I very much value people's experiences and advice on here, more so than I ever would on Facebook.
This is the only AFib forum I have joined. I have found the people on here, to be very helpful and the advice sheets are very good. I certainly got the information and advice I needed, when making a decision as to whether or not to have an ablation. ( I did have an ablation in the end, a year ago.)
Me too. There is so much rubbish on all subjects on Facebook, I would never trust one on as as important a subject as this. These days you find yourself made a member of the most ridiculous things. I was made a member of 'The Corrugated Iron Appreciation Society' !!!
The older I get, the fewer sources I trust, present company excepted of course!!!
Oh I love the sound of rain thundering down on corrugated iron as I take shelter below. One of the joys of my childhood. I expect my membership went missing in the post. 🤔
I could arrange a referral🤣
Facebook can be a dangerous “animal”. Anyone taking the advice from Facebook and believing it to be truly helpful really should speak with a therapist about “mind manipulation” and the and the ramifications it may be causing. The very best help is always a visit with either your EP or cardiologist and in the worst of times a visit to your local ER where there is generally a cardiologist on duty…..allbeit they are still “practicing physicians” but it’s 100% better than taking the advice from someone who actually knows very little, other than what happens within their own orbit.
That's trouble with the internet - anyone can post any rubbish. Many of the facebook groups just seem to have members arguing and insulting each other all day. Get a life springs to mind!
Paul
Well this post took a turn I was not expecting my remark which was answered at first was regarding the variation in symptoms reported compared with here. I agree the variation may be a difference in age, also constant references to various gizmos telling the owner dire things, which in the main won't be significant.
"Permanent AF"
Asymptotic AF
AF / tachycardia 
AF
