Have any of you been involved in any clinical trials, testing , studies?
I feel like, for the most common heart arrhythmia issue, there is not a great deal understood about this condition that so many people suffer from. I believe there needs to be a huge push to understand exactly what is going on with the heart, what causes it and more ways to help people live with it. A more holistic approach would be great but to have more options in general would be better also. I don’t subscribe to having to spend a lifetime on drugs. Especially when your under 50 and hopefully have a good amount of time left. The ablation obviously seems to be a pretty successful step in the right direction, I just feel like more could be done?
I would be more than willing to partake in any trials, study’s or testing myself and hopefully open up opportunities of further breakthroughs for this debilitating condition.
What do you guys think? Has anyone taken this route already?
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Elli86
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As a new comer to this game you need to understand just how new most of the science around AF really is.
Thirty years ago if diagnosed you would have ben told that it was "just one of those things" and to get on with life as best you could. The progress that has been made in treatment and understadanding. largely due to the work of Atrial Fibrillation Association by engaging with government here in UK and one or two top consultants can not be underestimated.
It was 2007 before I ever heard of the link between stroke and AF since when AF Association has been campaigning for screening to find the condition in the general public to help reduce the number of fatal and debilitating strokes each year. Treatments have improved and new drugs have been discovered but the more we learn the less we seem to know. There are many now who are starting to think that AF is a symptom rather than a condition!
Obviously for a condition such as AF which is not life threatening, resources will not be made available as much as for those diseases which do kill people. Many cancers still have no cure despite the huge sums of money spent on research.
As far as trials regarding AF are concerned these have usually been about new methods of performing ablation,( Sabine Ernst at Royal Brompton Hospital) or new drugs (such as Dronedarone back along) . There have been trials on devices to help prevent stroke such as the Watchman LAAO device and the Lariate procedure for removal of the Left atrial Appendage.
I can definitely appreciate how new this is and the advancement made is excellent no doubt. There can always be more done though, just a matter of time, investment and dedication in my view. Get some of the best brains in the country/world in a room together and with enough time and money spent you will USUALLY get the outcome your after. More awareness and interest is usually a good start as well. It’s very telling that most of the population have probably never even heard of AF until they’re unfortunate enough to get it.
Elli, how long do you believe that the person would be allowed to live, if he/she would step forward with the statement to have disclosed the secret of cardiac arrhythmia, with the result that the drugs are no longer necessary, that the ablations are not necessary, that the pace-makers are actually "stumbling in the dark" because of the lack of knowledge...?
In one of the videos of Dr Gupta, whom I personally adore, he said that the aim of the pharmaceutical companies is not to cure the people, but to let them be the consumers of their products for the rest of their lives. All said with that....
Probably as long as they would live if they stopped taking the drugs provided by the pharmaceutical company’s?? 🤣
All jokes aside while I do understand the astronomical amounts of money involved for said company’s, the stranglehold they have over the industry and the level of input they must have. I don’t subscribe to the theory that they go round “cappin a**s” and taking names. Personally I would just take a look at the amount of ailments/conditions that have been almost permanently eradicated over the years. Most of these by use of a vaccine that is administered once. Doesn’t make sense to me personally. I’m not of the opinion that we are being kept sick so that these companies can benefit from it. Maybe it does happen, corruption unfortunately seems to be an innate human quality, but I don’t believe this is happening across the board. I could easily be wrong, no one knows for sure. But I don’t subscribe to conspiracy’s personally. Some are proven to be true but if I hit enough balls in the dark eventually I’ll get a hole in one. Again each to their own, I could be wrong.
Hi Ellie,I was part of a clinical trial known as CEASE-AF. It was international and the UK arm was in Sheffield. The intention was to compare Minimaze and Left Atrial Appendage removal followed by catheter ablation against two ablations. The Final report has been delayed due to research departments focusing on covid recently, but lots to show good results,
I personally had the minimaze and am now approaching four years drug and AF-free. (Edited, I originally said five years, it will be four in April)
Minimally-invasive Maze procedure. The Cox maze lesion set is made on the outside of the heart, with access through the chest wall. Also needs a catheter ablation to scar the rear of the heart internally. It requires two-three days recovery in hospital due to the nature of the access.stopafib.org/mini-maze.cfm
The trial was sponsored by atriclip, developers of a device that closes the LAA. Due to no longer having an LAA, I have been able to come off anticoagulents.
According to my cardiologist, the initial report is very positive.
One of the problems is that AF has mainly been associated with people over 65 who very often have other conditions predisposing to AF as well. It is sometimes quite difficult for younger people to get diagnosed at all. When you think how little has been spent on research on Alzheimer’s which is so much worse you can understand why AF isn’t high up on research priority. You are very much in the minority - a young person with debilitating symptoms. Many people realise they have had PAF for years before things went really pear shaped and they were diagnosed. I believe (personally, science hasn’t quite agreed yet!) that a predisposition to AF at a younger age is genetic - throw in other factors and sooner or later you reach a tipping point 😬
I agree with the genetic pre-disposition aspect. I also think there is a correlation between being prematurely born and issues later in life.
In regards to the examples of alzeimers and cancer. We are talking about two extremely complicated diseases. One that affects the most complex part of the human body, the brain. Which we have yet to even scratch the surface of understanding. The other that is a disease that affects an almost limitless amount of different areas of the human body. Firstly I 100% agree that both of these should be given more collective brainpower and funding as they are both horrible diseases and obviously deadly. My grandad died with alzeimers and it’s sole destroying to watch take hold. Secondly I don’t feel like our condition would be a 5 minute fix by any stretch, I do however think it’s a much more straightforward problem than the 2 mentioned. The heart is not an overly complicated organ in my view ( although I’m DEFINITELY not an expert) and I would hope that with more awareness, funding and clinical trials the problem could be eradicated (comparatively) fairly quickly🤞 atleast that’s the hope anyway 🙏
I’m more than happy to put my heart where my mouth is and be a Guinea pig as well if it enables progression.
As far as I know, most trials focus on symptom reduction, either by drugs or intervention. For me, the interesting ones are the few which are looking at genetics - I think Israel is involved in some research into genetic causes of AF and the predisposition towards it.
Yes, in clinical trial for the pulse field ablation, best decision ever, 3 months past and no episodes just tiny flutters occasionally. Stopped flecainide and Diltiazem 2 months after ablation. Will be followed for one year. Wish I would have done this years ago instead of all the AFib episodes in ER, Cardioversions, medications, etc.
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