Volunteers

[Coeurdelion]

I have been using this site for a little while now but still don't know what a volunteer is. Are they medically qualified? Should I take more notice of them?

[jedimasterlincoln]

The volunteers will obviously say yes take more notice of us

Seriously, no one here is medically qualified and we'd always say seek medical advice. The best we do is compare and share experiences of what has happened to us, but everyone is different so your own Healthcare professional should be the person you contat with concerns etc

The volunteers are extremely knowledgable and supportive and prompt to help people in the right direction or offer clarification and they are head and shoulders above the majority in terms of what I would call "Encyclopedic knowledge"

[CDreamer]

Good question.

No they are not medically qualified, but they will know a lot about AF as they are generally people who are expert patients having had AF a good while. They are people who go out of their way to work with the AFA in one capacity or another, on this forum, proof reading material, consulting with the medical board on Patient Leaflets, attending meetings at the Houses of Parliament to inform and influence politicians and consult on policy making, running marathons or hold bring and buy sales to raise money, help in GP surgeries to do inform people on how to know your pulse and to keep an eye on this forum so if and when a Troll appears they are reported and taken down and banned quickly - yes we have had quite a few!

But the main role on this forum is to ensure members do not openly advertise, stick to the rules of the forum and counter blatant misinformation.

I don’t think most people realise the time, effort and commitment that the Volunteers do, unfortunately BobD is the only currently visible Volunteer, however, my understanding is that Rachel - Administrator - is working on having a few more active members named as Volunteers.

You may or may not know this but you will also see the occasional post in reply to a post by a doctor or an EP’s - one of whom invented the Kardia, several researchers and others with interest in AF.

[Hidden in reply to CDreamer]

Don’t tell me that it was BobD who managed the sub 2 hour marathon yesterday!!! 😂

[CDreamer in reply to Hidden]

Wouldn’t have put it past him 😉

[Jalia]

CDreamer has said it all really !

BobD is the really active volunteer on here and he is a font of knowledge. The amount of work he puts in should not be underestimated.

Many years ago when I joined the old yahoo forum which predated this one I thought I was pretty knowledgeable .....soon proved wrong when I encountered Bob !!

There are one or two posts which crop up from others from time to time which offer what I would consider duff advice though !🙄

[Coeurdelion in reply to Jalia]

I was not attempting in any way to demean the posts of volunteers. I just needed to know what a "volunteer" was. I now know.

I would say though, that they may have gained a lot of their knowledge from unresolved medical issues with their condition from tried methods that have failed.

I would like to hear more of progressive methods of treatment attacking some of the root causes rather than the symptoms. Surely there is better than drugs and ablations..

[7164 in reply to Coeurdelion]

Corturdelion

I am a newbie to this site and to Afib. I can say that I have learnt more from this site than the medics. The people on here will help and guide you. They will point out that they are not medics but they act as a guidepost and support for this odd condition

Rod

[Hidden in reply to 7164]

I agree

[Billblue in reply to 7164]

True 👍

[CDreamer in reply to Coeurdelion]

I am most interested in the areas of Personalised Medicine through Epigenetics, Immunology & Cardiac Metabolic with Dysautonomia, research and that is where I see the biggest future gains.

That is moving away from drug therapy & invasive procedures but from what I can gather it will be at least 15 years before this will be anything like mainstream - but a lot going on which you won’t hear about until it has clinical evidence of efficacy and that is why things go SO slowly.

I have posted a lot about complimentary therapies & Lifestyle Medicine & nearly always post links to any science based papers on the subject.

You need to search previous threads. One of my more recent posts was on gender difference in AF, both physiological & psychological.

[Coeurdelion in reply to CDreamer]

Thanks. I'll search some out.

I regret that at my age, any changes will be too far away.

[pusillanimous in reply to Coeurdelion]

Very interesting thoughts. I would like to know if much research has or is being done in the 'familial' and hereditary aspect of the condition. Myself and my three sisters all have the condition (diagnosed in our sixties and seventies), my son who is a competitive canoeist was diagnosed 10 years ago, underwent an ablation and has not had a repeat incident. My cardiologist told me that apart from older people, his most common Afib patient is a canoeist or triathlete. We think our late father may have had the condition. I would be interested to know if any light has been thrown on the reason for this diverse set of sufferers.

[Coeurdelion in reply to pusillanimous]

I too have a father and brother who suffer from Afib.

I have established that I am subject to attacks around eating and drinking and inability to digest. I am fairly confident that mine is set off by the Vagus nerve.

I understand that tests are currently being trialled relating to electrical pulses to the VN.

Personally, I am taking pro biotics in order to obtain more good bacteria to eliminate digestive problems. The jury is still out.

[pusillanimous in reply to Coeurdelion]

Thank you. I too have a 'gut' feeling (forgive the pun) that the Vagus nerve could be implicated in my fortunately infrequent and almost symptomless attacks. I was first diagnosed by chance after a severe vomiting episode caused by an antibiotic that did not suit me, but I have noticed that my heart rate increases if I eat too much, consequently I stick to small more frequent meals and have routinely for years (before diagnosis) taken a daily probiotic. Luckily I do not appear to have many digestive issues. The results of these trials should be of interest.

[Coeurdelion in reply to pusillanimous]

Sounds I am going the same way as you. When I do have an episode it is shorter and less violent than before. I eat smaller amounts and never late at night.

[Buffafly in reply to Coeurdelion]

We wish 🌠

[Coeurdelion in reply to Buffafly]

What do you wish?

[Buffafly in reply to Coeurdelion]

That there was 'something better than drugs and ablations', as you said. Many people advocate lifestyle changes which do help but as AF is often basically caused by heart damage which can't be fixed -yet - heart attack, leaky valves, I don't think there's likely to be much alternative.

[Coeurdelion in reply to Buffafly]

I see.

[wilsond in reply to Coeurdelion]

See my recent posts xx

[Jalia]

That's ok...i didn't think that you had intended to demean volunteers at all.

From what I gather there has not been anything groundbreaking in methods of treatment .

However what has been established is the importance of lifestyle changes which you have probably heard of anyhow viz trying to keep to a predominantly plant based diet, weight control...bmi under27 , avoidance of extreme forms of exercise and of course the inevitable avoidance of undue stress.

Personally I feel that the addition of magnesium glycinate..400mg daily...has helped to reduce my episodes of AF during the past 2 years. I have a very chequered 26 year history.

[Finvola]

I agree about tackling the root causes of heart rhythm disorder - and a lot of research time has gone into identifying many of them and developing counter measures. Examples are thyroid disease, obesity and binge drinking.

The basic root cause isn’t really affected by anything which currently can be done - cells in the heart can generate electrical signals which is how we manage to have a heartbeat but this ability can cause some ‘rogue’ cells to act up. There has been research done into gene therapy and stem cell therapy but I suspect any advance in these areas may be many years away.

We can help ourselves with various measures which have been widely discussed on the forum and tried and tested by many members. Everything I have encountered is about symptom control and enhancement of quality of life. I take drugs, supplemented by breathing techniques, meditation, dietary awareness and stress reduction. For me, this is probably as good as it gets but it is better than what many others go through with this condition.

[CDreamer in reply to Finvola]

SO agree. Trouble is it requires effort & commitment & I have realised that most people would rather take a pill than make the effort- fellow forum members are the exception.