Deleted post with link to AF outcomes

[Ppiman]

I just wrote a reply to a now deleted post that linked to an external site giving a review of AF and its long-term outcomes. It was from a company called "Medtronic", a maker of medical equipment and other materials. The web page it linked looked like it was a PowerPoint presentation aimed at health care staff. I was spurred to write a reply because one slide in particular gave potentially deeply worrying statistics concerning the likely health outcomes for people with AF, i..e yours truly and the rest of us here!

This was my reply:

"I question the fifth 'Outcomes' slide that gives potential long-term outcomes for AF patients focusing on fear-inducing things such as death, stroke, heart failure, depression and others. The figures given don't seem to account for a matched control group of people who get those things but who don't have AF, e.g. obviously very many non-AF patients end up with stroke, heart failure and, of course, we all die of something in old age.

For many older people, AF is an added burden to an already burdened heart and body, so separating out the eventual effects of AF alone is likely a statistical nightmare if not an impossibility."

The internet is replete with misinformation and social media is awash with it. This post wasn't at all of that order - but it was from a commercial company and not the NHS or similar.

Steve

[JudiHalf]

This is exactly why links need to be approved!

[BenHall1]

TBH Steve, over the last 14 years I've seen such references on here and the former website hosted by Yahoo, and I've just said to myself, lies, damn lies and statistics. Any research group, no matter what the background, science base, medical base or whatever all have a barrow to push.

I think one can make anything of statistics and excluding certain populations from a study is one way of skewing the results for whatever purpose. However, I also think AFA are being singularly unhelpful when censoring posts on here. I hope we aren't getting to the stage where peeps on here have to create an 'innocent' email address and post it in messages to express our interest in the forbidden fruit. I would have said your track record on here is sound enough to speak for itself in NOT referring peeps to junk.

It would be mopre helpful for AFA to publish a list of database which members of the forum could refer to without the feeling of being nobbled.

John

[ozziebob in reply to BenHall1]

I agree with you about the negative effects of our current censorship, but your suggestion about a list of "acceptable" websites is just a continuation of the same, and is a "definite NO" from me.

I mean, "how long is a piece of string?" applies also to your suggested "neverending" list.

[Ppiman in reply to ozziebob]

You're right. But it isn't usually difficult to ascertain when posting a link whether the web site is an established medical source or authority or some commercial concern with eyes on profit. We need to make that check, I feel.

The rise of unchecked social media, of vlogs, blogs and sub-stacks is truly an issue society will eventually have to deal with. For example, the anti-vaxxers are currently having a field day owing to the media's reporting of the shocking rise in measles' infection, for example, and, as with covid vaccination, I see social media bombarded by misinformation and YouTube channels thriving (with vlogger's bank balances soaring, too, as a result).

Steve

[Ppiman in reply to BenHall1]

I do know what you mean, and I am largely in agreement, John. You have a long experience of this forum. I didn't know that. Well done for sticking in there and contributing for so long and so helpfully.

Clinical trialists, though, are not - in my view and experience - all to be painted with the same brush, not by any means. Having spent many years working alongside them and with the doctors who carry out the studies, I believe that the spirit of scientific enquiry still reigns in their hearts and minds. The last few years have seen, via social media, the rise of the "cynic expert" and, for sure also, what a few label "Big Pharma", has much to answer for, but the world is still largely peopled by honest folk and, just to be sure, checks and balances, and the law itself, exists to keep science cleaner than it might otherwise be.

In this case, the information was clearly from a commercial company and, thus, presented a skewed account of the facts, being a promotional presentation rather than a scientific one.

Steve

[Letofeyd in reply to Ppiman]

Interesting conversation. I think we all understand that something like AF that is hard to cure and can last for decades is a massive boon for pharmaceutical companies.Regular custom is the mainstay for any business.😏

Their interest is not in curing AF, but in getting people to have it diagnosed and get them on expensive existing drugs, preferably for life.

On the other hand, outcomes for AF are scary, and people shouldn't be underestimating their diagnosis.

It doesn't take much to cross-reference data from the general population to compare to an AF diagnosed group on stroke incidence etc.

I wonder why they didn't do that?

[Ppiman in reply to Letofeyd]

All good points. The scientists looking at molecules are, I believe, keen to help people get well from their illnesses. I don't think there is any other mindset possible at the research level. It's what they do. It is the marketing departments that can often look for profit from other than good drugs, ones that are similar to what is presently available and so on. On the other hand the enormous cost of bringing a drug to market is beyond anyone's imaginings. A company could go bust easily if the wrong risks are taken or sales don't go the right way.

Steve