Please could everyone take a few moments to read the forum rules : healthunlocked.com/afassoci...
There have been several posts recently containing links to articles and videos that have not had prior approval from the Admin Team.
Please remember to send a message to me or TracyAdmin so that we may review the link before posting on the forum.
Thank you.
Katrina.
This is new and I guess we haven’t got used to it yet. I posted a link to a BHF report, did I need to have that reviewed?
I agree, personally I think Admin is using a sledge hammer to break a nut. I expect the reason is to prevent some from folk from posting promotional/adverting links which is laudable, but doesn’t happen very often. Not only that, there are enough “eagle eyed” members who can smell a scam and report it. Rules are rules but perhaps this one needs a rethink. I’m biased because I posted a perfectly acceptable link to a video which would have been helpful to virtually everyone but I was asked to delete it purely because someone felt the need to take advantage of this rule. At a time when it is almost impossible for newly diagnosed AF patients to see a GP, let alone a Specialist, this is bad news……
I agree with you fully in what you say, FJ and I think the rule makes unnecessary work for posters and Admin staff alike. As usual, it's the tiny minority posting dubious links which cause the problem and I would like to see exception reporting of these links to Admin, rather than a blanket need for approval for all.
Although it’s probably unenforceable, those of us who prefer to play by the rules can kiss goodbye to videos from Dr Sanjay Gupta etc. Hopefully enough has been said to make Admin realise that this a mistake and we should give them the space to rethink their strategy…..
We’ll said everyone !
Fore It was simpler to just remove spammers and those causing other users issues.. but now it like car insurances.. penalise everyone for the very small number who break the rules.. welcome to clown world.
Yes, you would need "approval" before any link or article title is posted in a Reply.
But are Admin playing favourites in implementing this new "rule"? The censorship does seem to be selectively applied at the moment.
As for the "rule" itself, it is madness, and completely corrupts the natural flow of communication that occurs in honest Replies on the Forum. If I have to ask for "approval (which can take 24-48 hours) prior to mentioning (giving a link to) any peer reviewed relevant scientific/medical research in a Reply, the moment is lost, along with the interested attention of other members re that Post. A castration of creative communication. Or is this the intention of the new rule being introduced? 🤔
As another has said, this rule is a sledge hammer to crack a peanut (or something smaller perhaps).
Yes Ozzie Bob, there does seem to be a problem with this statement in the rules:
"Your purpose in joining or posting should not be to promote, advertise, or otherwise call attention to your or another website, blog, product, or business. This includes ALL external links to reports/videos/websites without prior permission from the Admin Team. "
The first sentence makes sense except for "or another website" since this prohibits not just inappropriate postings but something that might be of outstanding significance or usefulness, described by a well qualified expert on A Fib, on another website. The second sentence seems to confirm the idea that no matter how relevant and/or valuable some information may be, it must not be accessible to forum members unless permission is granted.
The danger here is that a qualified practitioner discussing something controversial might be barred by the Editing Team for that reason alone. For this kind of censoring to be justifiable, that Team would need to have medical qualifications at least equivalent to those of the barred writer, and even then, would need to support such censorship in a scientifically rigorous manner. I daresay that many readers, like myself, post seldom but read frequently because of the insights and ideas appearing in the forum, without which, it would be much impoverished.
The majority of readers are mature enough to spot a poster intent on peddling falsehoods or being troublesome but to impose rules aimed at totally preventing any link to websites because they may contain inappropriate material will deprive readers of the information, anxiety relief ,and hope, that characterises the vast majority of postings.
May I suggest removal of the underlined words, and other changes as follows:
"Your purpose in joining or posting should not be to promote, advertise, or otherwise call attention to your or another website, blog, product, or business. This includes ALL External links to reports/videos/websites must be restricted to material of direct relevance to patients diagnosed with Atrial Fibrillation. If in any doubt, please seek prior permission from the Admin Team. "
Brlund
Hi Barry,
Good to see you springing into life again mate, even though the current HU controversy is a sad development.
A resolution along the lines you suggest is acceptable to my less logical mind, but is anyone in a position of power in HU actually listening? It seems not sadly.
I despair if Admin do not change their approach.
bob
PS. Don't be a stranger, and I hope your health has improved.
TBH, I fell asleep reading it all. Actually, I started to read it and was making sound progress .......... then it got silly and boring and then I fell asleep. It is a forum which is becoming so bureaucratic that it makes a HMRC dictate look interesting. It was never like this back in the good old days when Yahoo hosted this forum ... so I can only assume someone is kowtowing to HU. That being the case I'm outta here.
WELL SAID IN YOUR POST FLAPJACK.
But still and all I'd rather go back to the Yahoo days.
By the way I am on here to learn through an exchange of experiences and views. Is it not possible to find another host other than HU ? There is always something to learn from somebody even if it doesn't fit your own personal experience. But I'm not prepared to spend 95% of my spare sick leave time reading through rules and regulations.
Despite my age I am reasonably intelligent and am perfectly capable of sorting out the wheat from the chaff as are most on here !
John
Well YouTube is heavily helicoptered.. misinformation applies to anything not on the script.. by one of the few gatekeepers … its spreading to every platform now.. soon you will not even own your own thoughts.
I am someone who needs to have a reason for a rule. What is the reason for the change?
I agree with FJ, there are plenty of eagle eyed members who will always flag a suspicious link. If a video by Prof Schilling doesn’t get through censorship - I think I’m finally done contributing.
I also would like to have seen the recent thread on thinners before it was deleted.
But for those of you who think that we have some sort of helicopter monitoring here by administration -- I suggest you check out some of the other health forums and see what helicopter monitoring really is 
Definitely not perfect -- what is-- but all in all, I think the admin here strikes a very good balance between a free exchange of ideas and keeping the forum safe and on track.
Jim
Whilst I have no idea what “helicopter monitoring” is, I would respectfully disagree with you there, Jim. Apart from the Professor Schilling video being inexplicably deleted, as Flapjack mentioned, a very interesting video by Dr Sanjay Gupta on the dangers of over aggressive blood pressure control in the elderly was also swiftly deleted a while back. I also very much doubt TopBiscuit’s post will ever see the light of day again, either,
There does seem to be a theme developing on the forum and it’s not a healthy one, I fear. The “free exchange of ideas” you mention now only seems to be permitted if they fall within the accepted mainstream dogma. Any questioning of that dogma, or desire to discuss the reasoning behind the information put out is swiftly shut down. I agree with Flapjack that there are enough eagle-eyed members out there to render this new rule completely unnecessary. As others have said, we are all old enough to decide for ourselves what is worthy of our attention and what is not.
Threecats: ... I have no idea what “helicopter monitoring” is
Maybe it's an American phrase ... but it basically means hovering over. Like a helicopter parent is always hovering over their children, giving them no room to breathe and be themselves.
Jim
Jim,
I think your USA helicopter has definitely landed in UK, and is currently circling above us all.
I was asked by Admin not long ago to remove the link I gave you re research on the Japanese alternative for flecainide. Completely harmless informative peer reviewed research, which you acknowledged positively.
Unless the rules change, "we are all doomed" as Corporal Jones would say. (with apologies for my UK reference to the TV Series "Dad's Army")
bob
OzzieBob: I was asked by Admin not long ago to remove the link I gave you re research on the Japanese alternative for flecainide. Completely harmless informative peer reviewed research, which you acknowledged positively.
Yes. An interesting study. Someone must've reported it, but I'm not sure why.
Jim
This is the problem, finding out what type of Forum member feels the need to report such honest spontaneous helpful communication. There's no natural justice at play here at all. Tell me who is objecting to a link of mine so I can discuss it and understand.
And the only solution Admin have is to ban ALL such links and article titles, and "castrate" everyone. Just pathetic!
Thanks for the explanation Jim, that’s two new terms I’ve learned today😊 As ozziebob says, that helicopter has definitely arrived and is hovering nicely over the AF forum now!
Threecats: As ozziebob says, that helicopter has definitely arrived and is hovering nicely over the AF forum now!
You should check out some of the other health forums to see what helicopter monitoring really is. The link issue aside, at least they have no agenda, like the moderators at many other forms, and allow free discussion with varying point of view.
Jim
The thing is Jim, I’m not interested in what goes on with other health forums, this forum is the one that is of concern to me and I’m afraid I must profoundly disagree with your assertion that the moderators here have no agenda. Recent actions by admin have proved the opposite as far as I am concerned and so I believe there very much is an agenda now. From other comments in reply to this post, it seems I’m not alone in that view but each to their own and you’re just as entitled to hold the opposite view, of course.
All the best to you. TC
Well said!
There is one small caveat that many overlook but I think it’s worthy of consideration, particularly with a health related forum. I’m a great believer in the 80/20 rule. I think you are right, 80% of forum members have probably been round the block a few times. They understand how forums operate, they understand about how AF affects them and the treatment options available and are fairly comfortable with the knowledge that they are in control of their own destiny. However, often what they don’t think about is what the other 20% might be going through. All I will say is each week, around 60 people join this forum each week. You don’t need me to tell you the turmoil they must be going through, particularly if they have just been diagnosed with a heart condition they know nothing about. Sometimes we can easily forget that their needs regarding the delivery of information are probably very different to those in the 80% group……
I do appreciate what you are saying Flapjack and agree it is important to keep in mind how some folk coming across this forum for the first time may well be feeling on being diagnosed with a heart condition. However, I still consider the imposition of this new rule is far too draconian.
Regarding new members, as you commented earlier, if it now means videos from the likes of the York Cardiologist, Sanjay Gupta, will require “vetting” by admin first, we may well “kiss goodbye to them” as you say. This has already happened with the removal of one of his latest videos from the forum. I would venture to suggest that new members will be poorly served by this development alone, as I, for one, found his videos very helpful and reassuring in the early days of diagnosis. I would probably have not come across them had I not first seen one on this forum. Let’s hope admin will have a change of heart given the strength of feeling the post has generated.
I think we are both in total agreement with that……
New members are often directed to read the AFA info sheets and to avoid Dr Google. I agree that a list of approved sites would be helpful - AFA, BHF, York Cardiology etc….
I was not aware that this platform was unsafe. Unfortunate use of the word track since a track takes the user in a predetermined direction. I think that most of us use the platform to promote our health through the free exchange of ideas and the disclosure of personal experience. Some members at times post a link to literature which supports their ideas. Indeed you yourself do this occasionally Jim and I find this to be helpful.Regards
Katrina, what's the main problem? Politics or advertising?? If you don't tell us we'll never know.Someone here commented that we may lose news of Dr Sanjay Gupta's videos, you surely don't mean such 'on topic' stuff as that?
Here's what I was quoted by Admin re a peer reviewed article link yesterday ... from new Rules Sept 2023 ...
"Advertising/soliciting/self-promotion
Your purpose in joining or posting should not be to promote, advertise, or otherwise call attention to your or another website, blog, product, or business. This includes ALL external links to reports/videos/websites without prior permission from the Admin Team."
ALL external links, regardless of intention!
You have ALL been warned!
Wow that is very unhelpful. Peer reviewed research reports are incredibly helpful fact based information when people are trying to make decisions. As is sharing contacts of people we have used that others may wish to.
I do get the need for selling, promotion, spam not being allowed.
It would be great if the rule could be made more specific to allow for sharing of the useful things in the moment
Exactly ... see my other Replies to this Post. And most members are calling for Admin to produce a better solution.
Of course I don't know who is pulling the strings of these new self- appointed "content reviewers", but perhaps I should be better informed about HU.
As you say, the current new rules just castrate all natural human communication.
The more rules, restrictions, guidelines and censorship there are, the more people will understand that something IS WRONG in the society and will fight against it. Just look at what's happening in Germany these days, and it's only the beginning.
Personally, I don't mind that they are "brain washing" us, but I do mind that they are obviously adding the softener, lol!
Hi Katrina, following on a post above the rules categorically do not say that all links need to be approved by admin. The rules only call out self-promotion or advertising, but that is all. If you want to stop all embedded links then please be clearer and/or change the rules. Best regards
I think you need to re-read the rules. Not only does it say ALL links, All is in caps!!
Hi, not so, at best it's unclear, but the part about links is very clearly under self promotion or advertising, it's not a general point. If the intention is that it should be then it needs to be in a section on its own.I do hope that Hidden doesn't go quiet on us having kicked this off.
To avoid confusion I have copied the rule below. The temptation would be to say “ which part of ALL don’t you understand”, but I won’t 😉 It has been confirmed to me that ALL means ALL!
Advertising/soliciting/self-promotion
Your purpose in joining or posting should not be to promote, advertise, or otherwise call attention to your or another website, blog, product, or business. This includes ALL external links to reports/videos/websites without prior permission from the Admin Team. Forum posts should be free of ads and promotions that benefit the poster or other. Legitimate recommendations and requests for help are permitted, but in ambiguous circumstances users without a previous forum track record will not be given the benefit of the doubt.
Thank you all for your comments so far. The Admin Team are reading and noting comments and will continue to do so.
Katrina.
Thank you to everyone who has taken time to read and take on-board the Forum rules. I understand that this has bought about many disgruntled messages.
The rules of the Forum have been developed over time, this is to protect any misleading or inaccurate content being shared with the wider audience.
Please ensure any external links to articles/videos are shared with the Admin team for validity. This is because we strive to ensure the Forum is a safe environment for all members, therefore we ask that the links have been approved on behalf of the AF Association.
Please note, if links are posted without Admin consent, they will be removed. If you have any questions or would like to contact one of the Admin team, please feel free to contact: info@afa.org.uk
Thanks AFA (staff/admins) for your work/support.
Just to be clear, an hour ago you said that you were noting the points of concern raised by responsible members of this forum and an hour ago you have decided to ignore them …….
Wouldn’t it have been so much more constructive to say that you have listened to all the concerns and that you have decided to compile a library of links to information which members could find beneficial and we invite contributors from all members by sending your preferred links…..in that way you would control and we would have the ability to offer help to those who need it.
Sadly too late now……
Hi Tracy.
HNY to you. I think self promotion etc is unacceptable. However, taking down a video from Dr Sanjay Gupta is going a little to far.
Just my two pence worth. The regulars here will report any self promotion or anything 'spammy'. I've put links here in the past that I thought would benifit members. Some were for products to help deal with afib. I don't have any business connection with these compnies - they are just connentions
Have a lovely day.
Paul
" misleading or inaccurate content"ie content that we don't like.
As many of us (particularly newbies) are not aware what the ‘official line’ is without committing AFA info to heart it is difficult to predict what will be considered ‘misleading or inaccurate’ by admins. My experience is that those who post controversial views are challenged quickly by other members if not jumped on from a great height!
Exactly so.
"Just to be clear, an hour ago you (Katrina) said that you were noting the points of concern raised by responsible members of this forum and an hour ago you (Tracy) have decided to ignore them"
As written by Hidden but with my added italics. And I agree. Your recent conflicting Forum communications have only added to the confusion felt by honest Forum members re this matter.
Please reconsider and return with a better way forward.
I often reply to posts relating to fainting with a link to the very helpful “Stop Fainting” website, as their website states “Stop fainting is produced by a committed, experienced and passionate, core group of clinicians that prove the syncope at Imperial College Healthcare NHS Trust in London”
Do you really expect me to ask your permission to post a link to such a site each time a worried poster asks about the subject?
I appreciate your aim of keeping the site free of advertising and promotions. However you should rethink such an infantile and overbearing imposition on a group of adults.
As you will see from my history, this is the first time I have complained about the moderation of the site, I know it is a difficult balance, but on this rule you definitely need to think again!
Many on here are very sensitive to pharmaceutical drugs and are sharing what alternate approach they are using also couple with the statement, not everything is for everybody. Professional health care is at its lowest point ever and many can’t get more than a 5 minutes appointment to discuss serious issues. If we all can’t agree to disagree what is good for us personally than it might be time to leave this forum. I have learned a lot from some of the suggestions and links to books and articles, etc. We have a saying, “be your own advocate”. That is what we are, those on this platform. If that is going to be throttled and only approved by those that are less than open minded than it not going to work for long. I want to thank everyone for all the help and good advice in my short time on this forum. Suggestions on books and dr. Gupta. It has been a banquette of information and as they say, take what you need and leave the rest.
I would like to know who will decide what is ‘permitted’ and the criteria that needs to be met- with examples?
This for me this completely defeats the object of being a member of this forum. I have learned SO much over the 10 years I’ve been a member & I hope I have contributed to others’ learning. The majority of that learning has come from members, not doctors, not even the AFA - members. Links have been an important element and how all social media now works.
I do not understand how not posting links is helping ‘to keep members safe’. How?
I’ve no reason now to hang around. Maybe that is the ultimate aim?
My thoughts too CD - whilst awaiting an arbitary decision to post, continuity and helpfulness are lost. I don't know how I would have managed over the last 10 years without the members on this forum sharing their experiences - with links to things like videos made by cardiologist Sanjay Gupta.
Dogma and I don't get on too well.
Another point, I just replied to Etheral on a technical issue and copied from a web-site the info. Now wasn’t it not so long ago we were asked not to do that? To just post a short description and the link?
Will posts now be taken down when we post long essays on what we could have done with one link?
Will links to AFA info + videos also need to go through Admin?
The intent of the internet was to allow free discussion and exchange of ideas, whatever happened to that ethos?
And what about identifying references to article titles and/or links to those articles that you give in PMs? Do they need "approval" as well?
Good point. It seems that ‘internal’ links are not being taken down so if we have a link on a saved post, we could repost that link - that seems to be acceptable. 🤷
I was referring to the external links in PMs. 🤔
Good question, can Admin access our PMs 🧐?
I think what we are forgetting is the AI element and the use of algorithms to identify external links and key words? An opportunity and a threat.
No that is not the issue here.. over zealous scrutiny of everything because one or two precious people got “offended” by written words.. soon we will not have the freedom to write because speech freedom has already been addressed using this concept.
How can people be offended by posting a link?
Good question .. the world seems full of people who get offended so easily.. by words spoken and written.. off any media… advertisement or platform.. it’s beyond my control so why question me?
It is more probably that links come from various sites that may be regarded as misinformation… disinformation.. or malformation.. the information highway.. is now censored.
I'm afraid I have a more negative interpretation of the motives for HU trying to remove all articles/links that express ideas outside the "accepted dogma".
Look what's also happening in the research worlds as "novel" ideas in science and medicine are finding peer review and journal publication increasingly blocked.
This ominous development is now ubiquitous, and also reveals itself in those Forum members who report others who are making honest contributions in their Replies, and in Admin staff who are implementing this censorship.
It's a very disturbing environment for our Forum at the moment. 🤔
Entirely agree.. trying to share this knowledge on a platform poised to cancel anything that reveals things MSM already hide is your first clue….data wiping.. post removing … banning any person that wanders off the rules design to censor things further…stopping links to peer reviewed papers.. each publication has to pass scrutiny by at least 20 qualified doctors yet that is deemed dangerous by people with little medical expertise.. If only these people knew how many people need to hear truth now.. hiding it to further the aims of a few is unforgivable..
One thing I have noticed… 300 new members on average on this forum every month… most Afibbers…which is remarkable.. something is causing an uptick in thus condition in the UK…this reply could get me cancelled.
What do they say ... "follow the money"🤔
But it isn't HU getting rid of all external links!
You must know more than me on who is "pulling the strings" of our Admin staff. This is the only social Forum I contribute to.
I am interested to know more.🤔
No idea.
My admin friend is unaware of anything changing from the direction of HU. And that forum manages without external interference.
I checked the HU terms & conditions and they have a disclaimer that they are not responsible for the accuracy of any 3rd party hyperlinks - it’s not HU.
None of the other forums of which I am a member have any screening of Hyperlinks prior to posting.
BHF - who are very strict on what you can or not post eg - jokes are not allowed. Myasthenia gravis, Bone Health & Cholesterol forum.
I also like CDreamer think that we need examples of what is acceptable and what is not acceptable and why. Otherwise it looks like censorship which I am sure is not your intention.
I understand that a simple blanket rule is easier to manage but you need to read the room. If people start voting with their feet moderation will be simplified altogether as it won’t be needed if people don’t post.
I would like to read a Reply from Volunteer BobD on this matter. As he is usually the first in line with a Reply to all new Posts, is the absence of any contribution on this occasion significant? Or am I just being naive.
Come on Bob, what do you think? I'm sure it's not just me who is interested.
Sorry but my computer has been having a spring clean courtesy of my local IT man but stangely I never had notifications of most of the above posts. Not that I am into conspiracy theories. lol 😁
I must admit to complete puzzlement regarding what has happened. The original post which I suspect prompted this I did not agree with entirely as my response may have indicated but it was not abusive and well presented so I did not report it . Just becasue I did not agree did not make it threatening to me.
The question of links is in my opinion very odd. It used to be a rule that links were not merely posted but that a synopsis was included to guide members. How or why this new interpretation has come about I am not privy to despite my long associaation with AFA. I think most people know that when I use the term "we" I am talking about AFA of which I have been a member and volunteer since 2007 when we first started.
For many years this forum has bumbled along happily with the occasional troll popping up. I know that admin have had great difficulty with this situation in the past from time to time. Healthunlocked do put pressure on AFA to control things to avoid reports being made. On balance I feel that until recently things have been OK so not sure what has now occurred. Maybe somebody at HO will make contact and advise me?
What is unacceptable I feel is if valued members feel bound to leave as appears to have happened.
I do feel very sad that so many members are so upset but for now I will keep a watching brief rather than following others example.
At last, the sound of reason. I too am confused because as those who follow me will know, around 9.30 this morning I sent my last post and very reluctantly, clicked on the “leave the forum” button. Within a few minutes I received a message from Admin saying they had deleted my post and for some strange reason which I do not understand, I still appear to be able to reply to Bob. Like I, and so many others have said is that Admin have to decide if, for any reason, they are on a mission to censor this forum or if they just want to ensure that iffy links from iffy sources are moderated appropriately.
If it’s the former, it could be the death knell for this forum, but having said that, the forum seems to still function OK. If it’s the latter, then what’s wrong with the status quo. According to my missus, I’m on this forum more often than most and although I can’t be bothered to read links about trials on the basis I’ll soon find out if anything is likely to change, the last video I thought was iffy was the one where two doctors were telling themselves and their audience how wonderful they both were. I didn’t bother to report that either so I really cannot understand what has prompted this course of action to be taken. I could have chosen to contact the AFA CEO but decided not to, but let’s hope that Admin take on board what’s been said by so many and have got the message but we have to give them the time to work out what’s best for the forum and its members within the constraints which may be imposed upon them by HUL.
Like everyone here, I have health problems and I’m a lot closer to 80 than I would like so assuming I’m not banned anyway, you won’t be hearing from me for a while…….
Sad it’s come to this FJ, unfortunately it’s the 20% who will miss out on the support and encouragement you and other stalwarts of the forum.
I keep threatening to leave, instead I just find myself not bothering to reply much and if I can’t post links - it will be less and less.
I missed your earlier post this morning but I’m genuinely sorry to hear of your decision Flapjack, although I understand where you’re coming from. As CDreamer says , new members will miss out on your support and advice but you have to do what’s right for you. I, too , am considering my future on the forum but obviously, as an infrequent contributor, my absence will not have anything like the impact yours will have.
Anyway, I wish you and Mrs FJ well , TC
Thanks CD &TC’s (sounds like a double act!) for your kind words. Let’s hope a bit of common sense soon prevails so that we can all get back to what really matters.
As an aside from today's serious matter, I seem to have experienced some strange events during the short time when you left the community.
And unusual as it might be, I'm sure you actually "liked" a couple of my Replies earlier today (or was it yesterday?), but these alerts have now been credited in my history to "hidden", even though you are thankfully still inside the Forum.
If I'm wrong in thinking those "likes" were from you, you can blame it on the added confusion that yesterday's Post has inculcated in my brain and so many others in the Forum, as well as in the HU computer system it seems.
bob.
From what I can see, I “liked” a post you made yesterday which included a specific reference to me. Not sure when I did it. As far as my situation with this forum, I’m as confused as anyone. For reasons which will be clear to everyone, this morning I posted my “Last Post” and almost immediately I clicked on the “leave” button. Within minutes I received a message from Admin to say they had deleted my post and they explained the reasons why. Very soon after, BobD replied to this post and to my absolute surprise, I was able to send a reply. I am also receiving messages, of which there have been a few and as you can see, I can still contribute but I have no idea how or why. No doubt at some stage Admin will pull the plug but that’s entirely up to them.
Although they may have their reasons, they really have made a rod for their on back on this issue and I just hope common sense will prevail. Whether or not that answers your question I don’t know but I think everyone knows where I stand on this issue. I’m off to bed now, who knows if I’ll be back tomorrow!!
Hey FJ. Don't you dare leave! Your support here is second to none. Let's all accept that rules are rules (eBay or Face Book anyone). It would be a massive shame if the 'regulars' up and left.
Let's carry on doing what we do best - helping newbies to understand afib.
Paul
Sadly not as simple as that Paul. Other social media platforms are available for general chit chat whereas platforms such as this are designed to provide specific help for folk with AF. Quite rightly, because we are not medically trained, we are limited in what we can say to help them to overcome their fears after diagnosis. Up until now, within an instant, we can provide them with expert advice from medical experts that will have an immediate impact on their ability to come to terms with their condition and Admin seems unable or unwilling to recognise this simple fact. Surely this is even more critical when members find it almost impossible to seek face to face medical assistance from a doctor, any doctor let alone a specialist.
Outside the open forum, I have suggested they consider providing a blanket approval for links which everyone knows will hit the spot but they say NO, every time any one wants to use a link for whatever reason they have to submit a request for Admin to consider. People like you and me already spend enough of our time here and I’m damned if I am going to let them get away with this bureaucratic nonsense just to satisfy a whim. We all know what will happen, it will be a golden opportunity for wannabe doctors who already want to overstep the mark when providing medical help or guidance. This is change for the sake of change and I’m happy to explain why I say this in a separate reply to Admin……
Regardless, thank you for your kind comments Paul, they are very much appreciated…..
Hi FJ.
I have suggested they consider providing a blanket approval for links which everyone knows will hit the spot but they say NO, every time any one wants to use a link for whatever reason they have to submit a request for Admin to consider.
Great idea IMO. I have a few links I would normally just share. I know the information would help other members and it's not pointing towards a product or trying to sell anything.
Enjoy your day my friend and have a lovely weekend.
Paul
FlapJack,
Thanks for your clarification, which does help. I have since found one "like" from you, which seems to be the one you just referred to.
So I remain in ignorance of the member, now "hidden", who offered those two "likes" in quick succession, and has now left the Forum because of the recent Admin "rules".
The HU Forum is the loser when honest members are leaving.
There does seem to be a problem with this statement in the rules:
"Your purpose in joining or posting should not be to promote, advertise, or otherwise call attention to your or another website, blog, product, or business. This includes ALL external links to reports/videos/websites without prior permission from the Admin Team. "
The first sentence makes sense except for "or another website" since this prohibits not just inappropriate postings but something that might be of outstanding significance or usefulness, described by a well qualified expert on A Fib, on another website. The second sentence seems to confirm the idea that no matter how relevant and/or valuable some information may be, it must not be accessible to forum members unless permission is granted.
The danger here is that a qualified practitioner discussing something controversial might be barred by the Editing Team for that reason alone. For this kind of censoring to be justifiable, that Team would need to have medical qualifications at least equivalent to those of the barred writer, and even then, would need to support such censorship in a scientifically rigorous manner. I daresay that many readers, like myself, post seldom but read frequently because of the insights and ideas appearing in the forum, without which, it would be much impoverished.
The majority of readers are mature enough to spot a poster intent on peddling falsehoods or being troublesome but to impose rules aimed at totally preventing any link to websites because they may contain inappropriate material will deprive readers of the information, anxiety relief ,and hope, that characterises the vast majority of postings.
May I suggest removal of the underlined words, and other changes as follows:
"Your purpose in joining or posting should not be to promote, advertise, or otherwise call attention to your website, blog, product, or business. External links to reports/videos/websites must be restricted to material of direct relevance to patients diagnosed with Atrial Fibrillation. If in any doubt, please seek prior permission from the Admin Team. "
We might all bear in mind that though some controversial ideas are worthless, some have value and lead to positive outcomes. The science of medicine has a long history of progress brought about by testing ideas, not by banning them.
Regards
brlund
Atrial Fibrillation is on the rise since 2021 … you only have to look at the average numbers now joining… some 300 new per month.
You do not have to be a doctor to join dots..
What medical intervention began in the same timeframe?
When sufficient time passes there will be another enquiry involving all those platforms who played their part to stop dots being joined.
As I understand it, one of the objectives of following forum rules are quoted below:
_______________________________________________________________________________________
“The rules of the Forum have been developed over time, this is to protect any misleading or inaccurate content being shared with the wider audience.
Please ensure any external links to articles/videos are shared with the Admin team for validity. This is because we strive to ensure the Forum is a safe environment for all members, therefore we ask that the links have been approved on behalf of the AF Association.”________________________________________________________________________________________
Most charities tend to rely very much on support from members who volunteer their time, energy and experience for the benefit of others who reach out to the charity for help and support. It is assumed that charities tend to appreciate the help provided by their members because very often, without it they would find it very difficult to fulfil their objectives in supporting their members. Of course, forums can and do provide a valuable vehicle for sharing information but sometimes they can bring additional challenges which need to be managed to ensure nothing is compromised. However, if there is no tangible benefit, adding to the workload will have a negative effect. Although your members may not be experienced in managing a charity and/or forum, it’s very likely that they possess a wealth and variety of experience which might be worthy of some consideration.
In a commercial environment, enforcing change for the sake of change is rarely a good idea. If it ain’t broke, don’t mend it is a simple, classic example of good management.
So it’s always a good idea to assess the need for change rather than enforcing it on a whim. Hope you agree on the concept.
It should be easy to determine, excluding the recent legitimate links which are now included, how many links you have had to remove in say, the last 6 month which have fallen foul of the rules relating to promoting, advertising or drawing attention to someone’s website, blog, product or business. If the answer is possibly as near to zero as makes no difference, perhaps the need for change becomes less necessary.
If there have been any genuine links removed, the next step would be to establish how you were made aware of these infringements. The options are limited to either Admin input or members reports. Of course, without the data it’s not possible to know, but from what has been said in the past, I would imagine Admin input is as close to zero as makes no difference. Therefore, if there have been any member reports, any change you impose which is clearly not essential would alienate the very people that so far have helped you to keep this forum a welcoming and safe place for members to ask questions and share information.
Is it really surprising therefore, that members who perhaps possess a better understanding of basic management than Admin might give them credit for are angry and disappointed at having change imposed which is unnecessary and will achieve no additional benefits to anyone, on the contrary, it will stop them from being helped quickly and effectively.
Of course it’s your charity, your forum and your responsibility to make it work and of course, we are not aware if there are any genuine external influences such as your relationship with HealthUnlocked. Perhaps it might be helpful if any members of this forum who have experience of using other HUL forums tell us if they are aware of any similar rules enforced by other forums.
I hope there is no suggestion that I have been disrespectful or unreasonable in my assessment of the situation………
This forum is on healthunlocked.com and all the AFA literature and information is on heartrhythmalliance.org or afa.org.uk, both of which are technically external websites to the forum so do we take the rule to the letter as has been suggested?
Genuine question.
Someone I know well is an admin on a totally different HU forum. One of the busiest on HU. That has to deal with the same issues.
I told them of the policy and got a one-word reply:
Ridiculous!
Yesterday, I posted on forum.
healthunlocked.com/afassoci...
I hadn't seen this policy so did not seek approval.
The links are to a UK official website directly concerned with drugs/medicines, side effects, safety, etc., and the very new articles linked are directly to do with the very on-topic DOACs.
If it gets taken down because I didn't seek approval, so be it. But it will be denying forum members access to an up-to-date and relevant source of information. I shall not re-post it.
Just to emphasise, the guidelines refer to Advertising/soliciting/self-promotion. I do not think anyone can find anything I have ever done here which is any of those three.
And here’s one that should be taken down (latest reply from a new account, clearly trying to advertise something)
healthunlocked.com/afassoci...
Just goes to show what admin are up against.
But banning all external links does absolutely NOTHING to prevent such posts/replies.
That will get deleted when someone who has authority sees the report(s) of it. But has not been prevented it being posted.
One possible preventative is to have some sort of pre-post moderation for at least new members. But that gets in the way of people who have urgent needs, sign up, and post almost immediately.
Another is where external links are known to be to "bad" sites. But that can be got round by inventing site after site after site...
And closing posts originally posted by members who have since left.
Such posts allow replies which will not be seen by the original poster (who has left and no longer gets alerts), and can sit unnoticed by those who might act or report for a long time.
Yes, it’s a difficult one, I don’t think I would go through the process of seeking approval for anything as the moment would be lost. I have added links to many replies to help people with Apple Watch settings etc, so that has stopped for now.
Agreed.
I saw the SPS information because I get alerts from them. And immediately saw the relevance, and posted. Super-simple, super-obvious.
But time for approval would certainly tend to reduce the impetus.
That spam just above says it was posted 1 day ago. Which suggests that approval could take at least that long as surely that was reported quite quickly?
Tracey at Admin
An open message to Irina and Yatsura...
If you have Vagal AF should you be identified when they join the forum?
Anyone out there with really positive post-ablation stories?
Diltiazem Question
