Shut down post?: Genuine question... - British Heart Fou...

British Heart Foundation

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Shut down post?

Cymrucurious profile image
60 Replies

Genuine question ... Voicing my experience led to a down post?

I sent it to Amy to moderate and have had no reply but the post has been shut down?

What misinformation have I posted ?

Got a quite hostile reaction,

but also interest ... considering it got 27 likes in 48 hours?

So is it that there only 'authorized' subjects permitted?

Sending good vibes peeps

& Hibiscus

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Cymrucurious profile image
Cymrucurious
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60 Replies
ChoochSiesta profile image
ChoochSiesta

Without knowing any details it's difficult to know.

Instructor57 profile image
Instructor57

Having not seen the post I cant comment

Cymrucurious profile image
Cymrucurious in reply toInstructor57

healthunlocked.com/bhf/post... work??

Milkfairy profile image
MilkfairyHeart Star

Does this help?healthunlocked.com/bhf/about

Cymrucurious profile image
Cymrucurious in reply toMilkfairy

Technical genius Milkfairy 💗

HU explained why the post by Cora_bear was closed.

Unfortunately some of the replies have been reported as potentially dangerous advice and therefore the replies to this post will be turned off.

There is no indication it was your replies that caused it's demise unless you've been advised otherwise by HU.

Amy-BHF is currently on holiday, so that may explain why you had no response.

To be fair, it was always going to get closed.

Cymrucurious profile image
Cymrucurious in reply to

'Oh thats right Heedio, Call me paranoid 😬

There was no indication it was my replies that caused replies to be turned off Thank you for clarification

Hurray ... it wasn't me for once!

BeKind28- profile image
BeKind28-

Hello :-)

Yes your post is still on to view so will have been some of the replies no doubt and wanting to shut it down before taking the risk of any more escalating it if this makes sense

Beautiful flower by the way on this post is it one of yours ?

Don't worry about it sometimes this just happens :-) x

Cymrucurious profile image
Cymrucurious in reply toBeKind28-

You are lovely xYes it's aHibiscus flower.

the 1st ever on the shrub ... really beautiful to wake up to this morning

BeKind28- profile image
BeKind28- in reply toCymrucurious

Hello :-)

It is beautiful I love the garden and flowers :-) x

You did ask the question ...

What misinformation have I posted ?

So I responded as a caring member of the forum, indicating it wasn't you that caused the post to be shut down.

Cymrucurious profile image
Cymrucurious in reply to

Thank you.. I really appreciate you

Instructor57 profile image
Instructor57

It seems that the closing of replies was not due to your response

Truthseaker profile image
Truthseaker

There is a tremendous amount of censorship of the truth these days. Drs and nurses have lost their jobs for telling the truth in recent years.

I have no idea if it is possible for you to contact me or not, but if you can, I can help you to share your story on one of our NHS staff support groups on telegram.

Although these groups are primarily for NHS staff, as an admin I could allow you to post your story and see what kind of response we get.

I don't like censorship and I run a censorship free group, we all have the right to share our stories, the good, the bad and the ugly!

bee2 profile image
bee2 in reply toTruthseaker

There used to be a saying ...The truth will set you free" 😉

Gladiator1951 profile image
Gladiator1951 in reply tobee2

Yes, it was Jesus who said it.

Cymrucurious profile image
Cymrucurious in reply toTruthseaker

Thank you, I have sent you a 'private' message ... ironic now wasted

VelvetSky profile image
VelvetSky

I posted on your site, I believe in free speech which the BHF clearly do not. I would recommend watching on UTube the UK Covid Public Enquiry, module 4. In which censorship is spoken about. This is a fully legitimate Government Enquiry.

I was surprised your post lasted as long as it did.

PeterpPiper profile image
PeterpPiper

It’s a free country - provided we don’t say anything that goes against that what is decided by those that decide. Or suggest that there might be other health routes that may not always align with the route that is decided by those that decide the route. Or imply that any treatment that is decided by those that decide treatments was …. well I’m not allowed to say that :)

Bingo88 profile image
Bingo88 in reply toPeterpPiper

It's big brother again but any information which helps with our health problems that we have is always going to be beneficial to us. That's why we come here every day to educate ourselves. Because its easier and quicker than getting to see a doctor these days and they wonder why A and E is always full. Brian

Prada47 profile image
Prada47 in reply toPeterpPiper

Hello Your post is free speech you have posted what you wanted to say and it hasn't been removed. really at the end of the day if something is dangerous to others it shouldn't be allowed to stand Free Speech has to be responsible !!

Cymrucurious profile image
Cymrucurious in reply toPrada47

I was responsible!

Survivor1952 profile image
Survivor1952

censorship is alive and well, we no longer have free speech in this country …

Blearyeyed profile image
Blearyeyed in reply toSurvivor1952

We have never had free speech , just the appearance of it.

Even if the Powers That Be ask for public opinion it isn't usually because they intend to act upon what was said ; no matter how much more sensible that idea may be. Public Debate is only to give lip service to the notion that they listened before they do exactly what they planned to do in the first place.

Milkfairy profile image
MilkfairyHeart Star in reply toBlearyeyed

amnesty.org.uk/free-speech-....

From Amnesty International
Milkfairy profile image
MilkfairyHeart Star in reply toMilkfairy

amnesty.org.uk/free-speech-....

Blearyeyed profile image
Blearyeyed in reply toMilkfairy

Yes , the full article also supports my comments, so thank you for adding those links.

I like Amnesty international agree that the Government need to step in at times with laws and restrictions that prohibit the expression of hate speech and incitement to violence.

I'm sure we all do.

The article also points out that there are times that peoples freedom to speech is inappropriately restricted , outside the rules that we all believe to be reasonable, to prevent dialogue on issues that a particular government or group may not want discussed for their own reasons.

The comment I was making though wasn't about these extremes.

I was talking about Freedom of Speech in general everyday life . There are many rules of manners , etiquette and civil guidelines that restrict our right to say anything we feel like in particular situations (in many circumstances I can understand these too ).

But, even on a social level our freedom to speak our minds is often governed by the people we are in company with , and our own feelings about considering others and their health before we give our point of view.

In that sense Freedom of Speech is an illusion, particularly , and often understandably in a civil, caring society.

And my point about the Powers That Be was in relation to Global Governments and in the context of whether the views we are asked to give are taken into account and listened to before a decision is made , like on subjects such as health , education or social care. More often than not , we answer; but be are seldom heard.

Even polls and questionnaires are written in a way that often specifically cause the researcher to get the answers they want to help prove their theory rather than showing the whole story.

Democracy allows us to speak but does not necessarily allow us to give our full point of view ; even on things which fall outside the understandable rules about speech in a civil society.

Hope you and the dog are doing well , take care , Bee

Captain_Birdseye profile image
Captain_Birdseye in reply toMilkfairy

To quote Terry Pratchett (GNU)

All right," said Susan. "I'm not stupid. You're saying humans need... fantasies to make life bearable."

REALLY? AS IF IT WAS SOME KIND OF PINK PILL? NO. HUMANS NEED FANTASY TO BE HUMAN. TO BE THE PLACE WHERE THE FALLING ANGEL MEETS THE RISING APE.

"Tooth fairies? Hogfathers? Little—"

YES. AS PRACTICE. YOU HAVE TO START OUT LEARNING TO BELIEVE THE LITTLE LIES.

"So we can believe the big ones?"

YES. JUSTICE. MERCY. DUTY. THAT SORT OF THING.

"They're not the same at all!"

YOU THINK SO? THEN TAKE THE UNIVERSE AND GRIND IT DOWN TO THE FINEST POWDER AND SIEVE IT THROUGH THE FINEST SIEVE AND THEN SHOW ME ONE ATOM OF JUSTICE, ONE MOLECULE OF MERCY. AND YET—Death waved a hand. AND YET YOU ACT AS IF THERE IS SOME IDEAL ORDER IN THE WORLD, AS IF THERE IS SOME...SOME RIGHTNESS IN THE UNIVERSE BY WHICH IT MAY BE JUDGED.

"Yes, but people have got to believe that, or what's the point—"

MY POINT EXACTLY.

Freedom of speech or freedom of expression doesn't exist - it's a social construct that humans have created and it has rules and limitations that are different in each scenario or situation.

The issue here is that the rules aren't clear to everyone... folks that have been here a while know and remember certain rules coming into play and why that was necessary at the time. But it's not mentioned in the community rules/guidelines post for everyone to see.

There is a post regarding BHF and the currently unmentionable in the pinned post and we can't access it to read it. So this is a failing in itself - the rules aren't accessible to everyone.

There's also no rules against jokes but they seem to disappear.

There is a rule about spreading disinformation, but some posts seem to stay about.

The rules either aren't clear, or not consistently applied.

The thing is, on a more personal level, new folk are being turned off from the forum because they state their cardiac journey began with the unmentionable - and that is unfair. These people also need support and I believe we could offer that, perhaps with stipulations in place regarding heated debates. We have a rule in place stating no religion or politics so it's not unimaginable.

I know my cardiac journey began with the unmentionable illness, and the effects have left me looking at at very different life compared to what I imagined for myself. It would be good to discuss it, but I can't on this platform.

Anyway... consider this me freely expressing myself, within the rules I'm aware of.

Milkfairy profile image
MilkfairyHeart Star in reply toCaptain_Birdseye

I agree, it's all as clear as mud.

Blearyeyed profile image
Blearyeyed in reply toCaptain_Birdseye

Well said, Hugs , Bee

Cymrucurious profile image
Cymrucurious in reply toCaptain_Birdseye

I am broken ..

That is fact not Qanon conspiracy,

No comparison to my tread & how insensitive and off suject that was?!

I won't post again now I know

I understand your position that it would be therapeutic to be permitted to discuss freely captain ... I would love to hear your experience but there we are, it is not permitted and the point has been clearly made!

Thank you all for your likes and replies folks

Stay well 💗

MikeBB profile image
MikeBB in reply toSurvivor1952

You don’t get to say what you like on someone else’s forum. In this case, BHF.

Cymrucurious profile image
Cymrucurious in reply toMikeBB

Could you please clarify what you mean MikeBB?

Efka profile image
Efka

You started me thinking ok so lots and lots of words/topics are fully censored so if we can’t discuss those 🤡 - can we discuss the censorship itself and the level of it?!? I personally find it both astonishing and frightening.

Hey the moderators are just doing their jobs.

Remember who also said that? That's right, WW2 German soldiers.

Cymrucurious profile image
Cymrucurious in reply to

Oh no ... Tony poked the bear!

HHH2017 profile image
HHH2017

sadly the post was shut down but to be fair it was off target re 'Heart' issues and as always some responses became 'passionate' if Im being kind and possibly 'argumentative' if Im being objective. Its a difficult one. Don't take it personally. The topic is banned and thems the rules 🤷🏽‍♀️

Silvertail profile image
Silvertail

I didn't see your previous post which was shut down, however reading the thread now I think it may have been because some were giving advice to not have it. What I understand here is that it is a "no-no" to give anyone advice, just support. I could be wrong in my assumption, however I can't see any other reason.

Manderson27 profile image
Manderson27

Your concern in your OP was valid but as always with posts on this subject in so many forums they often get hijacked by others. This can be very divisive and can get pretty nasty if not shut down quickly. Sometimes the OP even starts getting messages from people who try to push them towards their own point of view. It was not you it was the way the responses were starting to trend toward misinformation and anecdotes that may cause more anxiety and distress not just for you but for others who may be reading but not participating.

DiggyDoggy profile image
DiggyDoggy

We could see your post yesterday but it was 'frozen' preventing replies.

It was some of the replies that were a 'problem' not so much your post. That being said, any post mentioning the c word can expect to be rapidly shut down.

There are some here who will always believe what the government and pharmaceutical industry tell them - regardless of the many mistakes, deliberate or accidental, that they make,

They will report any post not agreeing with the facts as presented by those institutions as being heresy/misinformation. They simply don't care that people such as yourself (and me!) have genuine concerns about C and want to hear people's stories and thoughts not just hear the official line. They, patronisingly, want to 'protect us' for our own good.

VelvetSky profile image
VelvetSky in reply toDiggyDoggy

I agree, I’m a grown up, mature, educated person and they are patronising us by treating us like this.

Palpman profile image
Palpman in reply toDiggyDoggy

It is nonsense to say that any post mentioning the 'C word' will be shut down.It will rightly be shut down if a Covid topic is created using misinformation and deviating from heart issues.

In fact almost every day I read a post where covid is mentioned but appropriately so and they are not censored.

Cymrucurious profile image
Cymrucurious in reply toDiggyDoggy

So precisely to the point DiggyDog I'm quite saddened. This thread has stirred up a few impassioned responses from real people who just want a platform.

You state "any post containing the C word can expect to get rapidly shut down"

Inconceivable considering most members have been living in the real world, in all honesty is there anyone who hasnt been affected by 'IT' in one way or another since 2020?

Censorship of transparent discussion just compounds my/ our scepticism,

I/ we are clearly not alone

Blearyeyed profile image
Blearyeyed in reply toDiggyDoggy

Also some of us would like to discuss why it is that we support certain medical opinions. We certainly don't all consider people's concerns or views as heresy, any view or worry that a person has is valid and often shared by others.

Sometimes there is misinformation or inaccurate reports of the statistics that circulate or headline a post( on either side of the debate ) . These make it even more confusing for people to make a decision. so it gets quite frustrating when a statement is put out that you disagree with or was factually inaccurate , and everyone gets to read the post but then no one gets to answer and help.

The most important reason the things to do with the virus need discussing though is to give people whom may have developed a heart condition related to any virus a place to find others with the same problems and get some advice and understanding.

Imagine having myocarditis or recurring pericarditis , or the long effects after an infection making your heart condition feel worse but not having somewhere to talk about it without having a post shut down. They are the people I feel for.

Cymrucurious profile image
Cymrucurious in reply toBlearyeyed

As do I ... it is Inconceivable I know

Thank you Blearyeyed & hope you find that somewhere to talk

wischo profile image
wischo

Probably no help but will chip in anyway, had all my jabs and two boosters to boot but when the last one came I thought can not be bothered as its almost gone. Caught the bloody virus 6 weeks ago and it floored me, I also got Afib for the first time ever with it and was put on Apixaban to boot. Six weeks later and still not right and afib has settled so hoping to get off these bloody blood thinners as well. I for one will be taking any jabs I can get in the future and thats for sure. Hope this helps a bit.

Classof1988 profile image
Classof1988 in reply towischo

Sorry to hear you have suffered but surely wasn't the point of having them to stop you getting floored by it?? Doesn't that suggest that something may be wrong with the scenario? It is your choice absolutely but please think this through and do not dismiss what I and others, all of whom genuinely have your best interests at heart, are saying without looking at both sides of the argument and researching the facts.

GrannyE profile image
GrannyE

thanks for the hibiscus. It is not only pretty but good for you.

Cymrucurious profile image
Cymrucurious in reply toGrannyE

Pleasure GrannyE x

cimarosa profile image
cimarosa

Unfortunately there is a minority of people who give dangerous unscientific opinions advice which could be harmful to others, especially vulnerable people. Consider the harm.done by people like Qanon who see medical experts in terms of bizarre conspiracy theories. Admins are right to shut off posts if replies are potentially dangerous.

Cymrucurious profile image
Cymrucurious in reply tocimarosa

Well that certainly didn't apply to my post 🤣

Prada47 profile image
Prada47 in reply toCymrucurious

No but it did to some responses !

Cymrucurious profile image
Cymrucurious in reply toPrada47

Yep I can see your point Prada

Cymrucurious profile image
Cymrucurious in reply tocimarosa

Qanon wow!

cimarosa profile image
cimarosa

I think admin are intelligent enough to see through any post that allows those people who challenge medical/epidemiological opinion from qualified experts to air their uninformed opinions, usually garnered from social media. I have seen too many posts on here from people who try obliquely to undermine medicqlal opinion.

Cymrucurious profile image
Cymrucurious

I give up

Prada47 profile image
Prada47 in reply toCymrucurious

At least you will be able to go slow now at 30mph !!

I saw the post and think it is a very relevant concern and to anyone who says "you are not just doing it for yourself you are doing it for everyone else" (getting the jab) that is incorrect as it does NOT stop the risk of you passing the virus on. It is really important that facts are put out there and that people are not repeating unproven soundbites or "slogans" that were used during the virus.

cimarosa profile image
cimarosa

Postings about postings... I prefer posting about medical matters otherwise the tedium gets too big.

Cymrucurious profile image
Cymrucurious

I gave up 5 days ago You do you cimarosa and as you.please fee speech

Subject closed

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