Is it just me ?

[bushy2016]

Hi everyone is it just me or does anyone else believe that some of the members of this group dont have af and are here just to gather information from us so they can then write there thesis's and or there market research....maybe Im just paranoid...due to all the tablets i take

[pottypete1]

You may be right but I guess there is little anyone who objects can do.

One of the things that is a consequence of the this type of social media.

I think for most of us the benefits of this forum outway the shortfalls.

Pete

[RaquelP in reply to pottypete1]

Hi, I for one, are one of those person(s). I have AF ( atrial flutter) not Afib. I am thank you for this forum and Comminity of AF's. It's giving my great comfort in knowing I'm not alone in this struggle and I've been given HOPE! So thank you all for posting whatever is on your minds and heart. My cardiac ablation is scheduled on July 28th. And so I will be in due time posting my post ablation experiences in hopes it can help encourage or give hope to someone else.

[Beancounter Volunteer]

Hi Bushy

Maybe you are right, there are certainly lots of people who read and do not post, and that could be for any number of reasons.

However I would like to think that for any of them they are finding out more about our condition, and more importantly how each individual feels about it.

That for me outweighs any "lurkers"

Be well

Ian

[Jeanmarlene49 in reply to Beancounter]

Hi.I am a member. this is the first time I've posted!I have AF and other heart related conditions and would like to thank all members for the information, empathy and support shown.It has certainly given me comfort.Cheers.

[RaquelP in reply to Beancounter]

Beancounter, yes your are correct. I for one, is one of those person(s). I have AF ( atrial flutter) not Afib. I am thankful you this forum and Comminity of AF's. It's giving my great comfort in knowing I'm not alone in this struggle and I've been given HOPE! So thank you all for posting whatever is on your minds and heart. My cardiac ablation is scheduled on July 28th. And so, I will be ... in due time posting my post ablation experiences in hopes it can help encourage or give hope to someone else.

[azriverrat]

As long as they learn something writing their thesis they can apply to help us later or market us better products who cares.

If they are just here for their own amusment of us then heck they can't do anything worse than afib the supposedly gentle condition has already done to me.

[CDreamer]

I think you will find that is one of the reasons this site was originally set up, so researchers and medics could gather information. Hence the polls you are often asked to take but I don't think they read every post.

Surely that is a good thing?

What is it that concerns you?

[BobD Volunteer]

Hi Bushy, There have been some weird ones about recently for sure and when I suspect trolling or commercial interest I have a quiet word with admin and they usually deal with it. You can always complain yourself if you have a worry about an individual.

We also get people with other health issues chiming in from time to time I suspect because they find Healthunlocked and since we are first on the list do not realise that there may be a better fit for them should they scroll through the menu of subjects. I usually suggest that where it is obvious they are in the wrong place.

One does have to be careful as some people do seem to have an agenda and for those it is best to just ignore them I feel as engaging with them merely increases their power to disrupt.

Considering the number of members we have there is actually very little trouble.

Bob

[Finvola]

There certainly have been a couple of people blatantly pushing their commercial agendas but in the thousands of helpful, informed posts they were an insubstantial minority.

As for research, the more the better to understand this horrible condition and perhaps improve everyone's lot.

The good which this forum offers to all of us far outweighs the few shadows which it may have.

[10gingercats]

I have had a couple of odd ones recently and very persistent in wanting to know EVERYTHING about me medically.I wrote a 'noncommittal' answer to each of them and they 'buzzed'off.I have also been contacted by a known doc. in this field....but not advertising himself to do an ablation!!

[jeanjeannie50]

I haven't really been aware of anyone pursuing their own medical business interest agenda on this forum. Though I must say that I've noticed that a lot of our USA members do post a lot of internet links to medical sites in their posts.

If medical professionals come on to this site to learn from our discussions, then I think that can only be a good thing and we should encourage them here. Mind you if they're trying to sell something that's a different matter.

I'll keep my eyes open from now on.

Jean

[doodle68]

Quote Bushy ''Everyone is it just me or does anyone else believe that some of the members of this group dont have af and are here just to gather information from us so they can then write there thesis's and or there market research...''

Good if it raises awareness about AF and that includes among GPs some of whom don't seem to take the condition seriously or to act upon symptoms when they are presented too them .

[Beehive1]

Hi I am new (posted about pacemaker). I have been trawling through older posts and asking questions but only to arm myself with information and prepare. I am really grateful for the help and advice received. Maybe some , like me, are trying to sort through it all. As I was not diagnosed until I had a stroke, I sometimes need to get more clarity so I chase threads and reread. Sorry if it is raising flags. Re research, if it helps prevent someone from having a stroke out of the blue with no other indicators of an issue or helps anyone cope with tge symptoms, they should be brave and just ask for volunteers...

Thank you all for sharing tips and advice; it is really helping me.

[bushy2016 in reply to Beehive1]

I promise you, you wouldnt raise my suspicion..you will notice the copy and pasted posts that take you 15 minutes to read that raise my suspicion

[Beehive1 in reply to bushy2016]

Yeah, I have noticed them and tend to skip over them...

[fallingtopieces]

I think there's nothing untoward going on. All forums have way more readers than posters.

I read the posts on here almost every day but rarely post myself now. That's due to me having a prolonged, stable non AF time, so nothing to report 🙂. (Hope that's not jinxed it for me 🙄.)

Pat.

[Hatty_36 in reply to fallingtopieces]

I do to and and havent posted much because I have only had one Af episode so far!

[mavisrich in reply to Hatty_36]

lucky you Hatty. I have one about every fortnight. Though now it is mainly out of breath and light headed The bisdoprolol must have slowed my heart.

[Harfly]

Hi like Beehive1 I too use the forum to search through previous posts to find out more about my condition. I am 3 weeks post ablation and feel great and in these last few weeks have been trawling through an assortment of threads. Although I have only posted a few times I find the daily posts informative and also sometimes the banter is good and cheers me up! 😊

[Lcpatrol]

I suppose there could be something in what you say however I feel that this site is a godsend to people who need support when they are facing a frightening (and rather poorly understood condition). So it's mosly positive.

For those who need it (i.e. The patients not the researchers) I see that they fall into several categories. Newly diagnosed, those with controlled AF, and those with uncontrolled AF.

For each of these the site is very useful. Hopefully for the newly diagnosed they get advise and reassurance that they are not alone. For those with controlled AF, like me, it's about ways of minimising (or eliminating) drug therapy. And for the uncontrolled it's about ways of trying to control it, with drug therapy or ablation. For all of us the site is about trying to understand facts about AF.

I don't see a problem with researchers assessing the site as long as they don't take advantage of it. By reading what patients really feel they may learn something.

Long may the site continue and long may those that support with advice (patients and clinicians) continue to do so. I, for one, thank them.

[CatAnn]

That just doesn't make any sense to worry about that. And who cares? Any info shared is a good thing.

[Mandie4711]

Hi bushy2016,

Maybe there are some but on the other hand there are people like me that has just in the past few weeks been rushed to A&E just because of high Troponin level, had a few simple tests and told I need to see Rapid heart clinic within a week. No appointment arrived until August . Living everyday breathless , scared stiff I think I'm going to have heart attack. Went back to Drs yesterday as just couldn't breath and no help at all. Have the mouth spray but scared to use it. Been told Angina but until seen I have no idea. I would pay to just see a Cardiologist if I could get to see one within a week and Dr said she could refer me but although August isn't to far away I wonder how long a referral would take. I've read many posts on this site and submitted questions as I don't understand what AF is and I'm looking for help and advice which I'm sure many others that have just been left in the dark are doing. To be honest I'm so confused and scared that I feel like giving up at times as can't live everyday like this. It's a huge black cloud hanging over me as I have no answers only fear.

[opal11uk in reply to Mandie4711]

guysandstthomas.nhs.uk/our-... Please read this link from Guys Hospital, its very interesting and informative

[Buffafly in reply to Mandie4711]

Please do use the spray, for more info about angina I also suggest you visit the British Heart Foundation website where you can download a very useful booklet or 20! and I think you can phone a nurse as well. When I was first diagnosed the BHF leaflets in my GPs waiting room were my only source of good information, so I am a big fan.

[sleeksheep]

I think the one that just copied + pasted link's a short while ago was certainly about getting click bait for other sites but personally I just ignored anything under the post by that member.

In my case there is so much good information available on this site that I feel redundant in expressing anything more. BobD in particular expresses information in such a clear way that it makes everything easily understandable for which I am highly grateful.

[Hidden]

I don't have AF. Husband was diagnosed with AF, and that didn't sit right with me, so had further investigations done and found out it was not AF, after all investigations, but had we followed the 'advice' given at hospital he would have been on anti-coagulants un-necessarily and a few other drugs that he did not need. The hospital did not want to admit they had made a mistake with his diagnosis, but I had to push the complaint through until we got the correct diagnosis. h

I do have SVT but used the holistic approach to keep this under control. the best bit, after I retired from the NHS (Post Graduate medical training), very few incidences and then I just sit and sip ice water and massage and i can get back to sinus rhythm.

[opal11uk]

If medical under grads or above are visiting to learn more about this worrying and debilitating condition then this augers well for the future. My grandson is a bio medical scientist who did a 4 year degree course and then a further 2 years to gain his Masters and this necessitated hours of research and they have to get it from somewhere, you never know, one or two may decide to specialise in A/F and these young and clever minds may come up with a cure in the future. If they want a case history I would definitely volunteer lol

[dougo]

Trust me I have AF and have just had cryroablation and am recovering nicely. So I know where you are coming from.

[Hidden]

A researcher is easy to spot and if they are going to spread the message about AF and anticoagulation to a wider public and clinicians, then I'm heartily for it. In 2016 there was a researcher on this site who was interested in AF and anticoagulation and later contacted me privately. That led to an opportunity to raise the profile of AF and anticoagulation in the UK and USA with a low profile information video. Separately from this forum, I gave consent for a medical paper to be published on my case of pulmonary toxicity / cryptogenic organising pneumonia secondary to Dronedarone and Amiodarone; that may save others from disability or even death.

This forum is a rich source of experience and advice beyond that of many clinicians. We can also empathise and support people who just been diagnosed with AF and have no answers to their questions. This is a great forum full of friendly, helpful people. Let's celebrate that in a world that seems increasingly self-centered.

[Upsky]

I feel there's more knowledge in here from AFers than GPs so if people are in here purely for learning then great.

I've posted a personal thing recently and quite frankly I really don't mind who reads it if it gets me answers I need rather than an unhelpful there there pat on the arm patronising response from a so called qualified expert.

[Hidden]

If anyone is concerned about researchers on forums but want to help the medical community, why not see if your GP Practice helps in the training of medical students? You go along as a mystery patient and the medical students have to diagnose your medical condition by questions and physical examination. I go along as someone who is atypical for a stroke but this can widen to cover lifestyle and AF as well. I've done three of these for first and second year students and as well as benefitting future patients, I may be one of their patients in the future too. There are misconceptions about AF and strokes and we are in a great place to help dispel them.

[Hidden]

It was through this forum that I was invited to be a patient rep on a NICE group discussing a patient decision aid for anticoagulants. Don't be afraid of researchers in this forum or in the medical community at large.

[SJB1234]

I do not write on here very often, but I have had ablation done 2years ago and recently started AF again every 5weeks or so do not know if thyroid has gone overactive or something else and reading your posts help me.