Questions: why do some heart related... - British Heart Fou...

British Heart Foundation

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Freya11 profile image
35 Replies

why do some heart related questions get taken down?

is this not censorship and anti freedom of speech? Something that people have lost their lives for? Should we accept not being able to ask questions and being shut down without a reason?

I am not anti CVC but it scares me that people can’t ask questions and share experiences about unexplained heart failure.

Does this concern other people?

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Freya11 profile image
Freya11
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35 Replies
MummaSoap profile image
MummaSoap

Hi Freya, I’ve had a look on your profile and noticed your input from others post. The reason people might not be able to see it is because you’ve mentioned the virus that must not be named. Some people phrase it this way instead or refer to it as Voldemort 😂 Your previous post hasn’t been taken down, if you click on your profile and go to your posts then you should be able to go in and edit the post to remove the specific wording about Voldemort and replace it with whatever you choose to refer to it as instead then you should be good to go 🙂

I believe it was to do with the height of the pandemic when there wasn’t a great deal of information or evidence and a lot of speculation and scaremongering.

There are certain rules about what we can and can’t discuss pinned on the homepage I believe, but usually they might get taken down because another member has reported the post or the post doesn’t Aline to those “house rules”.

Hope this helps.

Best wishes

Soap 🧼

Captain_Birdseye profile image
Captain_Birdseye in reply to MummaSoap

Well put!

Captain_Birdseye profile image
Captain_Birdseye

To answer your question, You're not the first person to voice concern about this topic - however the moderators aren't budging on this one, and it's pretty much to prevent arguments as some people have very strong opinions.

Essentially, moderating the forum becomes difficult. That's the reason. My grandparents have a "no politics at the dinner table" rule for a similar reason. Some restaurants and bars don't allow football colours. House rules are House rules.

As for censorship and freedom of speech, we have a workaround - as mummasoap explained, so we can still discuss it - so if you can rephrase and post again, it'll get through no worries 🙂

Silvertail profile image
Silvertail

In your first post, you mentioned the virus that can't be named. It's a no no in this forum. I don't know why.

Kristin1812 profile image
Kristin1812Heart Star in reply to Silvertail

I assumed it was because the subject caused a lot of very strong reactions, and disagreements, expressed in ways that breached the rules and focussed more on the virus than the heart.

1234_6 profile image
1234_6

I think it's to do with the fact that cardiac issues in the general population appear to have increased & appear to still be increasing, since the arrival of that which shall not be named; and that due to in todays very litigious society they don't want to be seen to be taking any sides at all, or appearing to be endorsing any opinions and / or conspiracies before Governments have decided to investigate more fully.

MikeBB profile image
MikeBB in reply to 1234_6

And this is exactly the reason that the topic is banned. Fake news and incorrect information. Reported!

Yogi1950s profile image
Yogi1950s

Regarding the "Anti freedom of speech" comment: Freedom of speech also brings with it a massive responsibility to moderate what is said. I ,as you, have the right to say anything I wish, but responsibility says I shouldn't say anything which I know or aught to know will cause hurt or harm to anyone else. Equally I should not say anything which I know or aught to know would be untrue or spread disinformation.

Sadly too many (and I am not suggesting that you are one of them) seem to be incapable of adhering to these seemingly simple rules, and therefore the site as the vast majority of sites it moderated to try to ensure that what is out there to be read truly conforms.

Milkfairy profile image
MilkfairyHeart Star in reply to Yogi1950s

Thank you for saying this.I also raised the important issue of freedom of speech coming with responsibilities.

It wasn't well received by some individuals.

Freedom of speech doesn't give anyone the right to be offensive, rude, insulting, dishonest, or cause harm to others.

archiebun profile image
archiebun

Thats not how freedom of speech works. You have the right to say whatever you like in your own house. You dont have the right to say whatever you like in someone elses house. So the site owners can have their rules and you have the freedom to set up your own site. You dont have a right to be heard.

BridBoy profile image
BridBoy in reply to archiebun

Well said, this isn't a freedom of speech site, it's a site with rules. If you don't like them post elsewhere.

gilreid1 profile image
gilreid1

follow the rules and don’t cause arguments with of the topic comments (heart related )and you won’t have any problems

Wingnutty profile image
Wingnutty

"I think you will find the reason for the increase in Heart disease is due to Obesity, T2 diabetes and lifestyle/lack of exercise, not that which cannot be named." These things do cause heart disease Runinthepark, but let's not throw out the baby with the bath water. It's not like we were a very healthy country before 2020 and there has been a substantial increase in many ailments since that time.

1234_6 profile image
1234_6 in reply to Wingnutty

I completely agree that obesity and lifestyle are major factors for heart issues, both of which can cause Type 2 diabetes also, but I'm not sure we can assume the non-mentionable isn't playing a part alongside of these. I was told by a nurse in Cardilogy that pre the thing that can't be named that they were seeing referrals from A&E (even those triaged as low risk) within 3 weeks for the initial review, but now its taking 7 to 9months.

sam-sam32 profile image
sam-sam32

Yes it does Freya - it does concern me. My initial self-introduction and question about Bisoprolol and bed blocks was taken down because I mentioned Voldemort. It's about time such rules were updated! I dislike tech. anyway so am somewhat discouraged.

Sam-Sam 32

TheBoys profile image
TheBoys

well said!

gilreid1 profile image
gilreid1

? Answering a question bullying. Can I ask how you arrived at that conclusion. Not directed at anyone but only stating rules of our forum

BridBoy profile image
BridBoy

😂😂😂😂😂😂That gets the award of the most pathetic complaint of the week

😂😂😂😂😂😂

I've reported you for posting a pathetic retort.

😂😂😂😂😂😂

What a bloody idiot you are.

gilreid1 profile image
gilreid1

don’t think we are on the same language page so let’s just leave it there and not cause you any offence

1234_6 profile image
1234_6

Well I'm very sorry to read about your mate's wife passing away & his children losing their mum. I do hope that you will be able to give him some support at this sad time.

Lezzers profile image
Lezzers

I too am very sorry to hear about your mates wife, so very very sad. So very young, heartbreaking for your friend and his children

TheBoys profile image
TheBoys in reply to Lezzers

it really shook me and set me off. Horrible day.

Lezzers profile image
Lezzers in reply to TheBoys

I lost my sister when she was 31, her son turned 10 the week after she passed away. It's very hard, I really get your anger.

TheBoys profile image
TheBoys in reply to Lezzers

I didn’t mean to take it out on the forum tbh - I just started being a keyboard warrior. Then I end up with rapid pulse etc. Life is very hard - it always seems to be tough on those who least deserve it.

Lezzers profile image
Lezzers in reply to TheBoys

You're just reacting to what's been an incredibly bad day, I think most people will understand where you're coming from, if they don't well 🤷 I hope your HR has settled now

TheBoys profile image
TheBoys in reply to Lezzers

just about - been laying down for an hour or so. Had a shower .

Thanks so much for your help

Lezzers profile image
Lezzers in reply to TheBoys

You're very welcome. It's very hot & humid tonight, I hope you manage to get some sleep.

TheBoys profile image
TheBoys

I got really fed up today . Life is so hard and I end up getting wound up.

1234_6 profile image
1234_6 in reply to TheBoys

Hi TheBoys

Just wanted you know that you, your mate and his kids are being thought about. (And are in 🙏's too, which i hope won't offend either of you).

I forgot to mention yesterday that i'd recommend if you can to get a short storey book by Doris Stickney called "Waterbugs and Dragonflies: Explaining Death to Young Children", for your mate to read with / to his young kids. (It's avaliable on Amazon).

It's a lovely little book with a story about waterbugs leaving their mates behind them in their watery home, and turning into dragonflys in the sky, but then finding they cant return into the water to their mates; and it helps children to understand that someone can't come back again after dying, but that they are in a better place.

I wish you, & especially your mate, peace of mind, and the strength and courage to cope with all that needs to be done, and to get through one day at a time.

TheBoys profile image
TheBoys in reply to 1234_6

hi

Thank you so much for that - it’s very kind and incredibly thoughtful.

It means so much

Thanks

Paul

Tos92 profile image
Tos92

I’m very sorry to hear about your friend’s wife passing and those beautiful children who are also having to go through this tragedy. I’m glad they have their father and I’m glad he has you. I hope you can both support one another through this difficult time.

TheBoys profile image
TheBoys in reply to Tos92

thanks for those kind words - really do appreciate them. Thanks .

Freya11 profile image
Freya11

Apologies if this post caused upset, I know it can be distressing when you’re suffering. I know that first hand. As I have been diagnosed suddenly with heart failure with no explanation, with plenty of opinions and the odd conspiracy theories.

Even if the thing that cannot he mentioned caused my heart failure, I may be one of a tiny minority and it may have benefited the majority and society as a whole.

My concern is the governments own statistics show excess deaths rising and we don’t hear it being discussed or reported or what we have learned going forward. This cannot benefit society, because if we learn to stay silent and not ask questions and blindly accept every advancement, what could come next?

I would like to see the British Heart Foundation championing our concerns snd providing regular updates please? May help alleviate individual exchanges.

Bless you all and Thankyou for support and community.

Freya11 profile image
Freya11 in reply to Freya11

I also believe people with different voices should be heard, to bring balance to discussions and not shut down because they’re in the minority or it’s unpopular.

Milkfairy profile image
MilkfairyHeart Star in reply to Freya11

I am sorry to hear about your diagnosis.Living with uncertainty and not knowing why we develop our heart conditions can be challenging

I live with a rare, difficult to diagnose and poorly understood heart condition. Nobody can tell me why.

The BHF is championing our cause regarding the pandemic. So are the heart failure support groups and other organisations. You may find the information you need in these groups.

Pumping Marvellous, Cardiomyopathy UK or the British Society for Heart Failure.

bhf.org.uk/what-we-do/news-...

pumpingmarvellous.org/?s=Co...

cardiomyopathy.org/

bsh.org.uk/

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