Help needed! With letter to Prof. Robert West.

[seniorphil]

Hi all,
I have been in contact with Professor Robert West's team at the UCL regarding forthcoming clinical trials on ecigs. After a minor rant on the phone with one of his researchers and an exchange of emails with himself I received this:-

" Dear Phil

Thanks very much indeed. I am copying this to Dr Lion Shahab who is also doing research on e-cigarettes. I am very interested to stay in touch, not least in case I get media requests for vapers to speak to. You know what I would be interested in, if you felt like it: a letter from you and some of your fellow vapers expressing your views. We academics and public health advocates spend a lot of time sounding off about what's 'in your interests' but we do not take the trouble to listen to what you want. I can't promise but if you were to write a letter of no more than 500 words expressing your views on the way the public health advocates have been treating you I would see whether it could be published in the journal I edit, Addiction (www.addictionjournal.org) . I can’t promise but I would certainly be interested in what you have to say and so would our academic readers I think.

Best wishes

Robert

Professor Robert West Department of Epidemiology and Public Health University College London"

So I need to pen a letter of 500 words from us to him and I would like to use this thread for brainstorming of different ideas to put in the letter. We may be able to fit a few examples into the 500 words too, so fire away with anything you feel is relevant.
I will then put the letter together with the help of remnant who has experience writing, editing and journalism. I will then post the letter here for everyone to read and suggest changes. I will then ask who would like their name added to letter.
It's important this letter comes from us and it may come to nothing but if we get it right it may have a positive affect.

Can we keep this thread to ideas for the letter. If you want to discuss Prof. Robert West or the normal "them and us" arguments their are other places to do that, so constructive ideas about our treatment and experiences by the press, doctors, and government please.

[Deleted]

Personal experience in a nutshell

On smoking tobacco = chest infection every 3 months, anti social smell, etc etc

On NRT - psychotic due to low level of nicotine in NRT and told to go back to smoking tobacco by care team in 20 hours

On vaping - no chest infections in 3 years, Lowering nic/ml concentrations in my own time. 6oz (I was an oz a day girl) of tobacco smoked in 3 year; no ill effects to mental health; self funded. Skin better; teeth better. General health better

On lowering nic/ml concentration too fast/no nic - psychotic again and admitted to psych unit within 1 week

[seniorphil]

Sorry if I didn't make this clear. We will not have room to fit in general vaping experiences. This is only regarding how we have been treated by doctors, including their participation with government and press. Quote from letter in op:-

" We academics and public health advocates spend a lot of time sounding off about what's 'in your interests' but we do not take the trouble to listen to what you want. I can't promise but if you were to write a letter of no more than 500 words expressing your views on the way the public health advocates have been treating you"

We are going to have to keep to topic I am afraid. He is very interested in chatting to vapers about general experiences. I have suggested he comes to a vape meet and will post on here when he needs more paid volunteers.

[toots]

Ok, just a few that I can think of on the top of my head:

We want the right to be able to use 2nd & 3rd generation products - not just the cig-a-like type

We want the right to use larger than 2ml tanks

We want the right to choose the nicotine level in our e-liquids, not be limited to 20mg & under

We want the right to be able to buy larger than 10ml bottles of e-liquid

We don't want to be forced to stand outside with smokers in public places

We want support for our actions for giving up smoking, not to be reprimanded for it

We want to be regarded as ex-smokers if we are 100% vapers

We want our own stand alone EU vaping directive, not an e-cig directive within a tobacco directive

We do want regulation of our e-liquids, but only with regard to quality

We want our e-cig products (equipment) to remain as 'consumer products' so that innovation continues to grow

We want all the health officials to stop saying "we don't know what's in them", it's about time they found out what's in them, they've had long enough

We want the health officials to listen to the scientists who have carried out extensive testing

[Clivia]

my dentist immediately changed my status to 'non smoker' and was very interested in the subject - we need more people in the health section like him and toots already said it : we need more awareness of the health officials of what vaping actually is and what eliquids are made of

[vigowomble]

Agree with what toots said. I would add for debate on inclusion:-

1. We are happy for there to be a ban on sales to under 18s.

2. The current directive would just hand vaping over to Big Tobacco and their cigalikes that don't work as well as Gen 2.

3. Less smokers would quit if cigalikes are the only option.

4. We like flavours, the majority of us don't vape tobacco flavours and the "think of the children" argument on flavourings is a red herring.

5. Vaping is not a gateway to tobacco smoking but a gateway out.

[seniorphil]

Great stuff so far gals and guys.
Just what we need, loads of ideas.
remnant has already suggested the fact that a health professional will happily scaremonger in the press then follow with the "we just don't know" argument. In my original rant to the researcher I ask her why she didn't know, and the Professor seems to want to know.

[toots]

One type of argument could be given such as this scenario:

Let's just say myself and 3 friends go to an establishment of some sorts that don't allow e-cigs to be used, yet one of my friends uses a 'nicotine replacement' patch and is allowed to remain in that establishment, another of my friends uses a 'nicotine replacement' spray, also allowed to remain in that establishment, the third friend uses 'nicotine replacement' gum and once again is allowed to remain in that establishment, but as soon as I pull out my 'nicotine replacement' e-cig I am escorted out of the building - why - they are all 'nicotine replacement' products

[Clivia]

May 23, 2014 11:30:56 GMT toots said:

One type of argument could be given such as this scenario:

Let's just say myself and 3 friends go to an establishment of some sorts that don't allow e-cigs to be used, yet one of my friends uses a 'nicotine replacement' patch and is allowed to remain in that establishment, another of my friends uses a 'nicotine replacement' spray, also allowed to remain in that establishment, the third friend uses 'nicotine replacement' gum and once again is allowed to remain in that establishment, but as soon as I pull out my 'nicotine replacement' e-cig I am escorted out of the building - why - they are all 'nicotine replacement' products

toots - that is easy to explain - because you produce vapour , which can be seen and smelt - I fully understand that for example vaping in a restaurant is not allowed - even I would not like a cloud of vanilla custard over my spaghetti

[GunJack]

Big question from me for the "health professionals" is:- why do you want to insist on wanting to both medicinalise and regulate e-cigs/PVs? I've not seen one convincing argument yet....

It seems like a combination of jealousy (they didn't come up with the idea), worry about future funding of their own little part of the "stop smoking" pot, jealousy ('coz they can't recommend them because they're not licensed as a quitting product), jealousy (because they work), jealousy (because they are regulated as a consumer product under 18 regs, not medical), jealousy ('coz we can make our own choices regarding kit, juice strength and flavours, and, god forbid, dose), etc., etc.,....

common theme seems to be on display.... if they were truly concerned about public health, they'd be supportive not dismissive

[VapingBad]

As smokers we were made to feel like lepers to safeguard others health, and it seems to be happening again this time without any justification.  As long term victims of the tobacco industry the current push for licensing will put us at their mercy again, when we had found a way to to re-enter acceptable society.  And as established pariahs the great and the good seem to disregard our opinion and our need to become healthier. We need help to get them to keep an open mind, to put some value on our health outcomes and put science over old grudges.

Its more basic that our right to choose, its about our right to not die a slow and painful death. To me choice doesn't fit as the decision is a no-brainer.

[babs]

I think that we can safely say that we don't trust these officials that made decisions behind closed doors that do not include any vapers or vaping suppliers. We have time and time again shown that the cig-a-likes do not work for the majority of vapers yet the EU regulations soon to come into force ban everything except them. We are also not stupid and do know what's in our liquids to a great extent and can and do check out claims that are made either for good or bad. We also KNOW from our own experiences what is best for each individual user. I for one am getting very fed up of being treated as a child. We know there are dangers with liquids but so is there from a lot of everyday cleaning products and the majority of us take appropriate care. I cannot respect any health care organisation that just spouts the same old line gateway effect, think of the children, it looks like smoke, that has not taken the trouble to research at all. I've noted with interest that the big tobacco companies are now producing cig-a-likes which are the only products that the EU regs are likely to allow and feel sold out. I am a law abiding 66year old woman never been into any form of politics yet I value my health enough that I will somehow continue to vape even if I have to go underground/black market to do so. I am not a passionate advocate of vaping never preaching what others should do always respecting other peoples right to life their own way. I want the same respect and don't feel that vapers are getting that.

[gibla53]

A few Public Health officials listen to us, the two most notable ones are Louise Ross (SSS Leicester) and Jim McManus(Hertfordshire Director of PH). We have respect for these people who have taken the time and trouble to find out the facts independent of the usual blinkered nonsense. The total utter opposite of that are the likes of Simon Chapman and Martin McKee who regularly abuse Vapers on Social media, if you hold views other than their arrogant uninformed nonsense it results in getting "blocked" on twitter by them. Chapman and McKee regularly taunt Vapers and their supporters such as Clive Bates and Antoine Flauhaut with seeming inpunity, Astroturf accusations have been made , "frothing + foaming at the mouth followers" was another, many more examples could be given .

[ckc]

My pet hate when emailing a local Director of Public Health and explaining that I'd been using ecigs for 5 years and sending her links etc, I got a reply like I had no knowledge what-so-ever and managed to pull out just about everything she could think of that was bad about ecigs in her eyes,nothing much about the good.

On sending the latest Smoking Toolkit figures and Wests recent study result I didn't even get an acknowledgement. Is PH really that interested in knowing the views of vapers ?

[GunJack]

May 24, 2014 13:37:01 GMT ckc said:

On sending the latest Smoking Toolkit figures and Wests recent study result I didn't even get an acknowledgement. Is PH really that interested in knowing the views of vapers ?

some of them, no, reasons in post #9