Isn't it time that stupid algorithm that deletes any post with the C word, was removed from the forum? In my news feed today 4 posts were deleted, ie 4 people didn't get the help they needed because they just happened to mention you know what as a side comment.
Time to get back to normal? - British Heart Fou...
Time to get back to normal?
Written by
Qualipop
To view profiles and participate in discussions please or .
73 Replies
•
MilkfairyHeart Star
I suggest you contact the BHF administrator directly.
Hidden
I haven't a clue what word you are talking about?
It's a bit like any rumour-- if it isn't named out, then it grows legs.
My mind is absolutely full of possibilities!!
Name it to shame it!!😝😎
Sars-cov 2
Thank you. I've just spent half-hour looking back through posts for last 4 days and couldn't find any thing!
The funny thing is that I am here purely because I was feeling constantly fatigued and finally went to doctor because I thought it was related to the vaccinations I'd had.
But it appeared that I had high BP., And possible prediabetic, which utterly shocked me as I wouldn't consider myself in any way a candidate.
So I'm very thankful to Covid for providing the impetus to go to the doctor.
I really feel I've dodged a bullet!!🥵
Can't name it or the post would be deleted but it starts with C and ends with D and we've suffered it for two years. Posts naming it get automatically deleted even if people just happen to mention it and are not asking about it. BHF got inundated with questions they couldn't possible answer at the start so they blocked anything that mentioned it.
The BHF didn't block discussions because they couldn't answer questions. Discussions were blocked because of the sheer number of 'agenda' comments and the escalating abusive & very personal comments, a lot of of the most offensive abuse came from posters who had been members of HU for years but these comments were the first input they'd ever had on the BHF forum! additionally those same posters were causing the same chaos across a number of HU forums which have now also banned any discussions around the subject.
The moderators have a duty to safeguard vulnerable members, if the only way they can do that is by blocking any discussions in the first place then that is the price the forum has had to pay sadly. Removing the offending members from HU doesn't work either, a few members that were removed appear to have returned using different user names.
Well then why not put up a simple message explaining rather than leaving people who are now seeking help, wondering why on earth their posts have been deleted?
Dear Qualipop
What news feed do you get ? Because mine doesn’t show up any, we know that you really want to talk about this matter, but why here? Because { again as far as I can see } the BHF has put out up to date information already on this.
Normal? I am sorry to say that after a triple heart bypass and now a CRT-d fitted my life will never be normal again
Qualipop in reply to
I have absolutely no interest in talking about it but there are now people just happening to mention it in a side remark who have genuine worries about heir heart whose posts get deleted and they have no idea why. There was one today who had blood clots and no follow up from the hospital and 3 others. I get a news feed that shows the first few lines of each post but when you try to open the post it just says" Oops that post is not available"
in reply to Qualipop
Thank you for that, sorry I now understand and I do get that feed, I thought { for some reason } that yours showed the full original post.
Qualipop in reply to
NO, same as you. SOmetimes the unmentionable gets mentioned in the first bit, other times not but obvious that's why it was deleted. The cause of people's problems is now irrelevant but they still need treatment and help.
HeartyJames in reply to
The thing is, we know that the C can effect the heart, so people are asking qustions based on that with long c and are very legitimate heart related issues from it.
in reply to HeartyJames
Not everyone knows this sadly I firmly believe that the az caused my ha , this was confirmed by the medication nurse to me . This should be talked about on this forum because it did happen and is still happening. It’s been proven time and time again
HeartyJames in reply to
same here..
in reply to HeartyJames
It’s ridiculous isn’t it , very frustrating that the one forum you should get support and help from shuts down any discussion about it
HeartyJames in reply to
Yes just message you
LMD1986 in reply to
…and me 🙁
Hello 
I can hear your frustration and concern and I do understand where you are coming from but this is such a tricky one and there are two sides to it both valid
As you know when the C word was allowed there was mayhem literally , members falling out , false information posted all of which became dangerous to allow to continue why Admin decided and must have something that flags up if the C word gets mentioned to delete it to prevent what I have just said
However I totally get your concerns and when you are a newcomer especially you are not going to be aware that you should not mention the C word and it must be quite confusing and upsetting when they see their post has been taken down and not even been given an explanation as to why
I suppose we think why are Admin not reading the posts and making decisions some need help and are acceptable others are not appropriate but those that are acceptable would then turn into a free for all as people would join in and no doubt the post that was harmless would end up going of track
I was an Admin on another site some years ago and it was no fun in the park as we say
You get so many complaints , reports and so on it becomes a full time job which you do voluntary and BHF who kindly have given us the use of this platform at the same time it is not their full time job and they just would not have the resources or time to check all the comments to ensure we are all safe and no doubt the reason they have had to resort to doing this
However maybe there would be something they could do like a banner or something that comes up saying if the C word is mentioned in a post it will be taken down blah blah blah etc something that you would not be able to miss when logging on so at least you know why your post has done a vanishing act
Maybe also they could add some signposting where to get support or share your concerns I know the BHF site has info on there
It really is like I said a difficult one from both points of view and I think Milkfairy has the best suggestion to message BHF Admins and put your concerns to them
If you do let us know how you get on x
Qualipop in reply to
I well remember the start of it all, the worry, the arguments and quite a bit of nastiness and admins just couldn't keep up which is presumably why the random algorithm was set up but I have suggested previously that there ought to be a message somewhere that no one can miss explaining that NO ONE can answer questions about C because quite simply no one has the answers. Obviously some people will be getting after effects now and may have been left with heart problems, whether caused by or connected t o C or not. Regardless of the cause, those people are still worried and need help. At the very least they need an explanation as to why their post has been deleted.
in reply to Qualipop
Hello
I think pushing for that notice to be put up so you cannot miss it would be the only way to go
I would certainly message them again and ask if they could possibly do it and fingers crossed they might x
Hello
Press on this link
healthunlocked.com/user/HU_...
It will take you to their profile and you will see "Message " just like you see when you go on a members profile
Just press on that and send your message x
Hi, I quite appreciate the problems that were had at the beginning but we are grown up people and mostly on this site people are reasonable and this a form of censorship of free speech. This is not the only site this happens on, I am on another site and every time the forbidden word is needed a picture of a carrot is substituted.🥕
I agree, surely we are all adults here. The deletion of posts with that word illustrate the uncertainty surroundng the subject. The science is most certainly not settled.
Thanks, let’s hear it for🥕 🥕
Hi devonian. We might be all adults, but some of the arguments on here about it got incredibly vicious and personal. Not pleasant at all 
the vicious and personal posts should get removed, not the original legitimate questions.. It is authoritarian to do so and should not be the way this country goes.
in reply to HeartyJames
Hello
I agree with you in one way but I think when you are a member and you can come on as we do when and if we want to been an Admin is so much work and going through reports which they get so many of we just do not realise how many they get and how much time it takes
This becomes a full time job for someone and I know because I have done Admin years ago on another Community and you never stop
BHF just don't have the time for this it might not be the post that is not acceptable but the replies it can encourage which takes forever to go through all of them
I have to say been a member is so much easier than been Admin which unless you give it a go you cannot appreciate what they do
We can say they should do this and that because we don't have to do it so it seems simple but trust me it isn't
There are other sites though that are online that do allow these topics which if we are dissatisfied with this Community we can always join and have what some think is needed Freedom of speech
It might only be a handful that cause chaos on the C posts but that is all it takes
Please remember that while some are complaining BHF are giving their own time free to moderate this Community which they don't have to they could even decide it is to much hard work and take the Community down , I think that would affect a lot more members
I for one am grateful for all the hard work they do and if one subject is banned I think we should be grown up enough to accept it knowing sometimes in life we may not agree but things are put in place for a reason and we have to accept them and like I said we are free to look at other options that allow these subjects if we wish to
Seriously have a go at been Admin and see what hard work it is , see what it feels like when people are moaning knowing the hard work and time you have been putting in for free and then come back and complain , I think it would really open so many peoples eyes if they did experience what is involved x
MikeBB in reply to
I’ll echo all of that.
HeartyJames in reply to
I used to be the manager and run/own a Bulletin board system from 1986 to 1993 and was the largest in the UK at the time, very pioneering and then moderated my own IRC groups and forums. I would only remove offensive posts, swearing or deflamatory and such like, or promoting any illegal activity. Quite simple really.
in reply to HeartyJames
But that was your choice to do so as the manager which would have been respected and this is BHF choice which also should be respected
This is not the same set up as your company was but you could always ask HU to start a Community where you could make the decisions and allow these topics to be discussed that could be a quite simple idea and solution
BHF will have had messages from members saying how they feel it is up to BHF now they are the Managers on here debating it will not change it
Anyway this is silly keep going on about something we cannot change so we might as well accept it and move on
Had a quick look round for you and others that wish to discuss the C word and came upon this Community which just having a quick look seems the C word is accepted
You and anyone else that wants their freedom of speech to talk about C may want to take a look at it and see if it will be more helpful I will put the link on
Wishing you a lovely day x
Thanks, I wasn't on the site when these attacks happened but there are legitimate areas of concern which need adult discussion as the science is nowhere near as settled as was previously claimed
We could try and find a picture of a long 🥕. 😂😂 As my long 🥕was the only risk factor doctors could find for my heart event, which was caused by a blood clot. Cholesterol was okay. As this subject is banned I’m nervous about posting anything about it.
But as we all know, cholesterol can be perfectly normal, one can be as fit as a fiddle, and still have a heart attack.
I feel exactly the same. Seems there is fear about the debate ... Mine was ten days after..
Yep, it's called using a sledgehammer to crack a nut! Princess Nut Nuts at the helm 😂
I wrote to them recently asking for an explanation for the censorship... There are some valid discussions about the linkages between the C word, the V word and clotting. If victims of that can't discuss it here then that is not fair, some of us are looking for answers... Posts that are abusive can be reported via normal means.They have not yet responded to me.
Well said. I've written too, please let us know if you get any reply.
in reply to hunterandcrew
Well said 👏🏻
Completely agree, after a cardiac event last November, I contracted that which must not be named and did need to go back to hospital, electrolytes went haywire. It would have been nice to check in here, if only to know if anyone else experienced the same thing. However the blanket ban blocked the comment
I guess it's to prevent mission creep, after all this site is supposed to be about helping people with heart issues.
I realise there will be overlapping issues but where do you draw the line?
I think the problem was, is that a handful of people had a view which was wrong but they pushed so hard to get their own way, that it ended up being banned.
in reply to HeartyJames
Pretty sure their views weren’t wrong as you say , it’s just a different view from yours .
You could replace the SA*E group previously advising us with people every bit as knowledgeable as them but with an opposite view. Proper research is showing serious causes for concern at the direction we took and largely still take. We don't want half baked conspiracy theorists but there are plenty of clever people with alternative views
I message some of the OPs to let them know that their post has been deleted and why, but I don't catch all the deleted posts...
For me it’s incredibly frustrating, my heart issues are a direct result of C and I still have fatigue from Long C so I want to support other people impacting by C but every time I go to *puff* gone. It feels like people are coming for help from people more experienced and just can’t get it. At some point the BHF are going to have to accept that C has impacted on some peoples hearts and their reason for needing support is valid.
Absolutely. I left the forum twice over the deletions... Really annoying and pathetic
Why? I’m genuinely intrigued as to why folks feel they can use this forum to discuss whatever they like?
Because it is heart related and effects many people seriously, It is on topic. We seek help, advice and support. It's different if people come on here just to be anti v and they should be banned as just trolling but not when legitimate issues many had and are still suffering to do with the heart.
I can see reasons not to get into the global argument, but surely discussing something in relation to its affect on your heart condition is what we're here for?
It is called freedom of speech even when it is not hate talk, not false and not off topic. There are sometimes that posts should be removed if they are any of those.
The good thing is first to smile, realise your alive and made it and that life will look different from now on, we survived and thanks to NHS whom I can talk highly enough about, Your home after the stent. Now the next step begins, as said in other replies the Rehab is a must, its great nit just for the activities you you do and feeling alive but the other people who have been through similar, its a real boost. I am now 3 years 3 months past a HA like you that I didn't know I was having and had one stent fitted, I think that's the most frightening as when you back home the fact that you were not quite sure what was happening and it wasn't that typical chest pain, you worry about every twinge. That's normal, I went back to A&E three times with what I thought was an issue but all just anxiety, it takes time.
if you are an active person, get out and walk after the first week, asap, build it up and as time goes by do more and more, nothing better than feeling your heart beating fast and having no pain, makes you understand you are ok(trusting that's the case if course) best verbal advise is question yourself when you get the anxiety attack, ask:- what can I really feel, ask, why am I getting worried about, is this actually real or just in my head, my cardiologist said one simple think as advise that stuck with me and that was, you will know if its a real problem, other wise, stop worrying and ignore the anxiety. Took me about 6 months for first stage to think that way, then it's just confidence over time, eventually (although always at the back of your mind for our own safety) we can deal with the thoughts that you may be having another HA. Good luck. I'm 55 now, run 5K every week now with a stent, walk about 15000 steps almost every day, cycle weekly, run up and down stairs, eat healthier, drink little and we can still get our lives back for those that are and can be active. Way to go doctors and nurses, you are saints!!
As you have already demonstrated, there are many ways to refer to that which must not be mentioned. It does make the sites that do this sort of thing look rather silly.
MilkfairyHeart Star
I agree, a way needs to be found to be able to discuss the issues involved. However alot of incorrect unsubstantiated views were posted.
The forum would require a much greater level of moderation. I am not sure there are enough moderators available to carry out this task.
Last time the forum was infiltrated by individuals who had a single agenda to undermine people's confidence in the 💉 programme.
The forum became like the wild west.
Many individuals were subjected to personal and offensive comments.
These offensive posts are not removed quickly enough.
Freedom of speech comes with responsibility.
Amnesty International says this:
"Freedom of speech and the right to freedom of expression applies to ideas of all kinds including those that may be deeply offensive. But it comes with responsibilities and we believe it can be legitimately restricted."
amnesty.org.uk/free-speech-...
Excellent! I was just about to post the AI advice! And I’m in complete agreement with the rest of your summary.
On a facetious note, if there was any conceivable way to link the political nonsense going on in merica right now to heart issues, I expect someone would be pushing their political agenda here. It’s just the way of the digital world.
I expect this thread - and the other similar ones - will disappear soon. We are all intelligent adults so surely we must know why. So why keep on about it? If / when BHF decide they want to allow C@vid related discussion then I expect they will.
They don’t at the moment. Their call I guess.
Absolutely spot on Milkfairy. Unfortunately some members did have an 'agenda' and were causing the same chaos across a number of the forums on HU and as a result you cannot mention the C word on those forums either. Sadly the abuse was horrendous, personal & escalated quickly, what was astonishing was that the most abusive comments came from people who had been members of HU for years and yet these 'anti' &/or abusive comments were the first time they'd had any input on the BHf forum!!! Additionally the abuse usually started in the evening when the moderators were not available!!
Moderators have a responsibility to keep vulnerable group members safe, but that was proving impossible due to the sheer volume of posts/comments, therefore the safest way is to completely stop any discussions outright as there is no guarantee the same wouldn't happen again. A number of members that were removed appear to have re-joined under different user names ....why would they do that???
Yep.
The only Cxxxd word I can think of is "Covid".
Qualipop you raise a very important and valid point. And Notdead and HeartyJames, absolutely. There is enough information on the Government yellow card reporting scheme and elsewhere to indicate potential heart issues with the V word. The forum needs to provide support and recognise problems so that solutions and relief can be provided.
Yes surely at least a message saying that health conditions will be discussed but perhaps not the causes of them like C or the shots for it. I can see from posts here that some people still have very strong feelings that could be likely to get out of hand. HOwever they should be able to discuss the health problem and possible treatments for it without getting into arguments about what caused it. I do understand that people will be worried about what caused a problem but the cause should be irrelevant. The treatment isn't.
I noticed again today that someone tried to warn everyone that there's a scam going round saying you need to buy tests because you've been near a contact but obviously even that got deleted.
Possibly, but I know I got a lot of abuse just by saying it's forum rules and to take it up with admin!! I never responded to any of the abuse that followed but that didn't stop 'members' from adding to the abuse, a great many of those members crossed over from another group & had never had any input on the BHF forum until then. Unfortunately there are a lot of people, not just in this group, who probably dont really care one iota about discussions, they just want to be offensive. The internet is a very powerful tool!
I rarely comment on posts or visit this group anymore because of the abuse & I know that of a couple of very knowledgeable members who left the group for the same reasons
I agree!!! It's really annoying! 😡But even the government ( that bunch of useless ****** I can't swear 'cos it might not get displayed here!🤪) is very silent on the topic of that unmentionable and also on Brexit! 🤔😡
Not what you're looking for?
You may also like...
When can I get back to my normal level of exercising?
am just walking 4 or 5k a day.
Does anyone have any suggestions as to how much I can safely do. I...
getting back to running
whether I should do this and what kind of exercise programme would help to get me back. Can anybody...
After my hiccup, Now BP issues 🙄 ♥ Will I ever get back to normal 😔
rate is now lower than post surgery (before surgery resting pulse 55-60) post surgery high 90 at...
Getting back up again, sometimes it’s an effort
feels such an effort after years of knock backs. I know my fitness has probably saved me as it’s...
Feel Like I’m getting back.
heart rate going off the scale. For the first time in a while I felt really alive. Can’t...
Getting My Driving Licence Back!
Scared to go back to normal - recent diagnoses. Please advise 
Higher heart rate after AVR, is it going to go back to normal?
Echo normal. What next? 
Normal echocardiogram and blood test?
