119 replies to this topic

[Kate]

John, if we can't compare notes then there's no way to detect trends. You're not the first person who thinks we shouldn't talk about symptoms in case some bimbo jumps to conclusions but I completely disagree. The only way we have to detect early warning signs is through internet communication and I'm not going to let censorship and scaremongering from 'what if' claims get in the way. The precautionary principle is what's caused most of our problems in the first place and using it to suggest that honest communication is negative is just another nail in the coffin for liberty and common sense.

[hifistud]

I can see both sides of this. What I'm curious about is what trends we're looking to detect. My gut feeling is that we already know that there's a set of "effects" that are reasonably consistent with beginning e-smokers, some of which are particular to PG, some to VG and some which are non-specific. The same gut feeling tells me that if an individual experiences something undesirable outside this set of changes, then their best bet is to seek medical advice, whether their doctor is e-smoking aware or not.

Once a medic has ruled out everything else, then there's good reason to share. Prior to that, with the best will in the world, we're the blind leading the blind, really, and what usually happens is that we see loads of opinions, but no real scientific/medical certainty.

What worries me a little is that someone may report a or a set of symptoms that have arisen coincident with a switch from smoking to e-cigs and take reassurance that it or they are down to the change, when, in fact they have something serious.

[Lisaf01]

I agree, dave.

It does sound sensible to be making an attempt to track this stuff, however, I would be far more comfortable if (1) the information was being tracked confidentally, and (2) the information was being tracked as part of a valid clinical trial (for want of a better word).

No-one can be sure that any symptom reported is anything at all to do with vaping, and the information collated in this exercise is unlikely to be useful from any genuinely scientific point of view and in fact is far more likely to provide ammunition for those that seek to place these devices under medicinal regulation.

Edited by Lisaf01, 15 September 2010 - 10:58 AM.

[Kate]

If we knew what we needed to detect then we wouldn't need to detect it.

If somebody gets symptoms of lung disease I'd like to know about it as early as possible. What other people do with that sort of information is their worry.

[hifistud]

Lisaf01, on 15 September 2010 - 10:57 AM, said:

is far more likely to provide ammunition for those that seek to place these devices under medicinal regulation.

It's not that which worries me, Lisa - although, of course, I'd not be happy about it.

No - it's that someone, with all the best intentions, could advise that some symptoms occurring coincidentally with taking up e-cigs are due to taking up e-cigs, when they may easily be symptoms of something completely different, not e-cig related, and potentially life threatening.

As an example, bleeding gums... fairly common with e-smoking, yet is also an early symptom of pyorhoea and mouth cancer. It's all too easy to say "yes, I got that, nothing to worry about", when it may be something far worse than the coincidence may suggest.

[hifistud]

Kate, on 15 September 2010 - 10:59 AM, said:

If we knew what we needed to detect then we wouldn't need to detect it.

If somebody gets symptoms of lung disease I'd like to know about it as early as possible. What other people do with that sort of information is their worry.

In effect, then, you're running an uncontrolled long term clinical (of sorts) trial - an epidemiological study of the effects of e-smoking. While I'd agree there is a need for exactly that, I'm not so sure that a web-based forum is the right place - and it does concern me that there is a real possibility that, in spite of everyone having the very best of intentions, someone could end up in a serious state because of mistaken information.

[Kate]

I think you're talking bollocks to be honest, it's comparing notes.

I look forward to the clinical trial Lisa is going to set up and the provision of professional monitoring and medical services that Dave wants.

Meanwhile, I'm keeping my eye on symptoms.

[Lisaf01]

SubVap, on 15 September 2010 - 11:21 AM, said:

Lisaf01, on 15 September 2010 - 10:57 AM, said:

is far more likely to provide ammunition for those that seek to place these devices under medicinal regulation.

It's not that which worries me, Lisa - although, of course, I'd not be happy about it.

No - it's that someone, with all the best intentions, could advise that some symptoms occurring coincidentally with taking up e-cigs are due to taking up e-cigs, when they may easily be symptoms of something completely different, not e-cig related, and potentially life threatening.

As an example, bleeding gums... fairly common with e-smoking, yet is also an early symptom of pyorhoea and mouth cancer. It's all too easy to say "yes, I got that, nothing to worry about", when it may be something far worse than the coincidence may suggest.

You're right, seeing the example you've cited, I can see that there is potential here for some extremely worrying consequences of this information being publicly collected. Private gathering of this information would seem more sensible.....

Edited by Lisaf01, 15 September 2010 - 11:41 AM.

[Kate]

So are you going to get off your complaining arse and do that Lisa or do you just enjoy telling people what they're allowed to talk about?

[Lisaf01]

I'm not telling people what they are allowed to talk about, I am expressing my worries - are you telling me that I am not allowed to do that?

Added to this, I'm not qualified to collate this kind of information.

Edited by Lisaf01, 15 September 2010 - 11:52 AM.

[Kate]

I'm telling you to shove your unhelpful criticism. If you can't provide something better then you're just getting in my way. I'm not a researcher, scientist or doctor but if you pay somebody to implement what you want with clinical trials and all the rest I'll happily remove my page.

[Lisaf01]

There's really no need to be so rude all the time. I am expressing my opinion which is as valid as anyone elses.

[Kate]

You get up my nose regularly with your opinionated, unhelpful criticisms. I really don't care what you think about how rude I am, at least I'm not tearing down the work of people who actually make an effort to try to do something useful.

If you don't want me to be rude to you then stop getting in my way, you're just a dead weight.

[Lisaf01]

ah, I see, so I'm not allowed to express my opinion because it gets in your way. I would politely suggest that the chip you carry around seems to be much more of an encumbrance than I could ever be.

[Kate]

Lisa, you talk the biggest load of bullshit just to tear people down. You've suggested how to make a reporting system that's up to your standards, rather than stand here and throw rocks maybe you could actually do something useful for a change and go off and make it happen. Once you've set up your clinical trials, professionally monitored reporting system and appropriate medical advisory service I'll take down the page you don't like.

[smokindeuce]

Forums are places where people can talk about what they like..... do you not think out of all the same old threads out there on suppliers selling so- and -so brand new spanking product etc etc, that threads like these at least hold some vital value to the esmoking community?

Of course medical advice should be sought in any event, but I do not see the problem and in fact find these kinds of threads very beneficial to the esmoking community at large. These are the voices of all of us people on the frontline of vaping.

All these threads are is a few people comparing notes on personal health matters.... they're not doctors, we're not doctors.... everyone knows this - it's just what it is nothing else.

I think we're living in a slightly paranoid world if we think that these kind of threads can be used against the esmoking community at large.... for one (while I don't doubt any experiences I've yet read), its hardly the firm scientific evidence required for anyone on the antagonising end!

Furthermore, if there were any common negative health impacts which were popping up more and more frequently, I for one would want to hear about them immediately and not a year too late because we were waiting for the results to come in.

If this kind of anecdotal data could really be used against esmoking, think how much positive anecdotal data there is that we could use to fight for esmoking..... but I don't see that happening anytime soon....

[Lisaf01]

Indeed, Tim, threads like these where people talk informally about their experiences have great value, it's possible though, that a central repository that's completely public and looks rather official does have the potential to do more damage than good particularly in the scenario Dave suggested. We've really got to be urging people to seek proper medical opinion in ALL cases.

Edited by Lisaf01, 15 September 2010 - 01:27 PM.

[Kate]

How are you going to encourage them to seek proper medical attention on the internet if they can't read?

Quote

If you are experiencing health problems please consult a professional medic

[hifistud]

If they can't read, they're less likely to be posting, I'd have thought.

Quote

Furthermore, if there were any common negative health impacts which were popping up more and more frequently, I for one would want to hear about them immediately and not a year too late because we were waiting for the results to come in.

I understand your point, but, as I've suggested, to treat a list of possible side-effects as definitive is, in my view, a mistake. Collation of evidence is one thing - it's epidemiology - but it's normally done rather more covertly. When we're talking about folks experiencing pulmonary symptoms, though, and they can search a database of reported symptoms which are coincident with e-smoking, it's all too simple to just think "must be the e-cigs, it'll pass".

A few years ago, I changed brands of smokes. I'd always smoked B&H and moved over to Marlbro. Within three days, I was coughing up blood.I put it down to the change of fags, but, Gill being a tad concerned, to appease her I went - walked - to the doctor's, and, from the surgery, was rushed into hospital, blues and two, the full bit. It was nothing to with the change of fags, and everything to do with a pulmonary embolism.

[Kate]

This hypothetical bimbo who uses internet anecdotes to diagnose a personal problem and who can't read isn't likely to be around for long anyway. Curtailing the sharing of information for the rest of us illustrates the dumbing down of everything and loss of liberty we all suffer because of supposedly protecting that hypothetical weakest link.