Dear AF Association Health Unlocked Members

[TracyAdmin]

Unfortunately, we have had to remove a link during view due to misleading medical evidence. At AF Association we try to be inclusive to all and respect each others opinions. However, if the post or any external links cause worry, stress or provide misleading information, or is not medically approved we act in the best interest of all our members. Usually these misleading messages are few and far between.

Please do not hesitate to contact me; [e-mail] with any questions or concerns, or alternatively if you would like to contact me direct.

Thank you for your understanding.

Best wishes,

Trudie

Founder & CEO

AF Association

[Bagrat]

I understand you have a duty of care to all readers, however can be a little frustrating for those of us with enquiring minds.Thank you for trying to protect us from the plethora of good, bad, and indifferent info out there. A lost cause probably but I understand you have to continue to monitor as this group is linked to AFA

[BobD Volunteer in reply to Bagrat]

The point is that AFA being part of Arrhythmia Alliance and a charity has to abide by rules themselves and any "facts" need to be signed off by the resident medical advisor and also NHS England. For example, the "Recovering from Ablation" fact sheet that I produced and edited took nearly three months to go through the process.

Without AFA to sponsor it there would be no forum.

[Bagrat in reply to BobD]

Yes Bob,thank you. That makes complete sense. I frequently say that two important things I try and abide by are, first do no harm, and secondly , trust your health care professionals and remind them you are part of the team. They have spent years learning about medical conditions. That doesn't mean I don't question their suggestions as the person most invested in my health is me.

[Ducky2003 in reply to BobD]

Especially when, if it's the post I'm thinking about, pretty much half of the person's posts on this forum, are relating to the controversial subject, rather than AF. And he has been warned previously about it, as can be seen on his post list.It does make you start to question people's motives, even though it may be done in all innocence.

[BobD Volunteer in reply to Ducky2003]

Yes Duck . Indeed it does.

[opal11uk]

Well done and thank you x no one wants misguided or non proven advice.

[AKatieD]

Unfortunately tho, "facts" can be in the eye of beholder and what one people/ group thinks are "facts" are not necessarily facts at all, even bodies who should be know better. Suppression of unconventional thinking can prevent new factd emerging.

For example, take the NHS, they widely believe the "fact" that all hypothyroid sufferers should be treated with T4 only and that is the best and should be the only treatment for everyone regardless. Even consultant endocrinologists who should kniw better. However, there are thousands of sufferers worldwide, with their own groups on Healthunlocked and elsewhere, who can and do attest to the NHS view not being a fact at all. You cannot rely on the NHS to supply the truth as cost constraints and faulty training has led them awry in this area for many years.

I am not saying they are wrong in all cases, just that a better solution for this group is to correct what you view to be the errors in posts by explanation of the evidence and let people make up their own mind.

If you visit and possibly talk to the admin of the Thyroid UK group on Healthunlocked you will see an example of a well run group. Advertising is not allowed but people are free to give medical references and advise with admin chipping in where appropriate.

[CDreamer in reply to AKatieD]

I completely agree with regarding your definition of what is or not a ‘fact’ as facts change as we know and understand them and change wit time and better understanding of the subject matter. My definition of a ‘fact’ which also fits with the general ethos of the Arrythnmia Alliance is - a consensus of expert opinion in a given geographical location at any one moment in time. I believe it is quite appropriate that ‘facts’ are debatable! In fact it is essential we DO challenge and debate but it’s how we do that which is important.

On the whole I think Admin on the AFA site do an excellent job as debate about contentious subjects has normally been tolerated - until the discussion gets nasty or abusive, which unfortunately has happened a few time when threads have been closed. In the BHF forum they would have been deleted immediately before anyone or only one or two people could reply. It’s impossible to get it right all the time and on the whole I like this forum best.

Having said that, I do not agree with the requirement of pre-approval of links before posting and if that is a rule, then every link needs to be removed, in which case many members would disappear. OR there should be clear guidelines as to the criteria a link to a site needs to meet or will be removed.

Unfortunately there are many people who do not have good intent and I have come across quite a few here promoting obvious scams who wish to profit or harm. Discriminating a person’s intent is not always easy or obvious.

[HGates in reply to CDreamer]

I’m not sure ‘consensus’ is how science progresses though. For a long time there was consensus over blood letting, lobotomies, lengthy bed rest after heart attacks, the idea that stress caused stomach ulcers rather than an easily tested for & treatable bacteria, HRT being protective against cardiovascular disease in menopausal women. Often the doctors that went against this medical dogma were ridiculed & pilloried & it could take a long time for established ideas to be replaced by novel ones that initially had been deemed quackery. Also as a society we know events like the 1950s polio vaccine, the 1970s Swine flu vaccine, thalidomide & Vioxx scandals happened. An ever increasing atmosphere of censorship & appeals to authority & consensus will just mean errors in treatment methods & dangerous drugs will remain in place even longer than before.

[ozziebob in reply to HGates]

I agree with you.

One Reply above even described Admin admiringly as "trying to maintain the status quo"(sic!). 🤔

Seems like damning praise to me, and is a good description of censorship.

Surely such an attitude has no place in the search for scientific truth, nor on this Forum.

[bean_counter27 in reply to CDreamer]

A consensus of expert opinions is not a 'fact' - it is still only an opinion. It might have more credibility to some people because it is the opinion of experts but at the end of the day, it is still only an opinion and it might be proven wrong in the fullness of time.

Opinions and beliefs are debateable, facts are not. If 2 people disagree on a fact then at least one of them is wrong.

[CDreamer in reply to bean_counter27]

So what is your definition of a fact?

[bean_counter27 in reply to CDreamer]

It's not my definition. It is "the" definition. A fact is something that is known or proved to be true. Not something that one merely believes to be true e.g. a consensus of expert opinion is what a group of experts believe is the case. In most cases I doubt they (the experts) will claim their opinion is a fact - otherwise they wouldn't call it their opinion. The problem arises because others use that opinion and for one reason or another, it's miscommunicated (innocently or deliberately) as being a fact. Just because there is strong evidence that something is true doesn't make it a fact. A fact is 100% true.

[DiyChas in reply to CDreamer]

What you are saying makes sense.However, I have changed my mind about links.

Each link to be added would need significant review to ensure appropriate.

The content of links can change and would need constant review.

Both requiring too much admin time.

In future, if I see a worthwhile link, I will refer to specific content only as my opinion.

[CDreamer in reply to DiyChas]

It’s a difficult one.

[secondtry]

'...misleading information, or is not medically approved' - this is an unrealistic burden for you and colleagues to identify.

Information has become very unreliable of late and once trusted sources are being questioned not by quacks or conspiracists but by highly reputable doctors.

So it boils down to who do you believe and I think, as with all medical decisions, the last word should be left with the patient however well meaning your actions are.

[CDreamer]

Thanks Tracy and thanks Trudie for the message, ultimately you are the one who has the last say as the AA is your creation and we all thank you deeply from the bottom of our hearts for your commitment.

[Paulbounce in reply to CDreamer]

Well said CD.

Paul

[OldJane]

good for you! Folk won’t starve if some links that are erased turn out to be ok. You do a brilliant job. Keep it up and thanks!

[Goosebumps]

this site is so invaluable, so important to so many members, many of whom just watch but don’t post. It simply isn’t a problem if a poster has to wait a while to get a link approved and I thank Admin for being there to do it.

[Qualipop]

Just to get an explanation from Admin is very much appreciated.

[marcyh]

Thank you for this explanation from Trudie.

The reference to "worry or stress or provide misleading information" is troubling to me. Truth obviously causes worry or stress in life at times. The pandemic itself has caused worry and stress. To have ongoing conflicting messages, where politics has been mixed with medicine, has resulted in unprecedented worry and stress. We have had misleading and flip-flopping advice repeatedly from government agencies. This has created untold stress and confusion.

"Medically approved" is also troubling since much of what we have been told is "consensus-based medicine." That is highly subjective. The hallmark of true medicine is to be evidence based. It is willing to stand up to scrutiny and advance with research.

To decide what is misleading is an unrealistic burden for you and your colleagues to bear. Leave that to us. We have an abundance of information at our fingertips and we each have our own unique health history. We need to have the freedom to interpret the information for ourselves.

marcyh

[CDreamer in reply to marcyh]

Agreed. There are certainly no facts in medicine only opinion but I do think some opinions are more informed than others but difficult to discriminate between what is helpful for oneself. Heart drugs are poison - that’s a fact for me but may help you.

Facts are not absolutes but some like to believe they are indisputable.

[MikeThePike]

Hi Trudie, "cause worry, stress"? I take issue with that approach because this is an adult forum for sharing information not a kindergarten. As long as a bit of information is factual and truthful it should be allowed. I don't come here to get my ears tickled and only read what makes me feel comfortable or cozy. I come here for good information. I'm a realist and I'm sure my fellow members are too. Best wishes.