Voices From The Street.

So, I spent some time wondering how best to deal with what has happened this week. What is the best thing to do? How should I react? Should I write a letter? Should I throw all my toys out of the pram? Should I scream and scream and scream until I get what I want (it didn't work for the Gin Advent Calendar!)?

What am I talking about? Well, a little while ago I wrote to the Lancet after reading yet another defence of John Ashton. My letter was abridged (with consultation) and then published. "YAY" we all said, "haven't we done well". Well, no, it seems.

This week we saw a response to my letter. I admit to being surprised, especially as to the people that chose to respond. Profs Martin McKee, Simon Chapman, Stanton Glantz and Mike Daube. I was even more surprised at the content of their response.

But first, I feel it is important I set out my conflicts of interest, being as these seem to be under question for all of us, all of the time.

COI -

My name is Lorien Faenor (stfu) Jollye. I am 36 years old, being born on the 30th day of the 6th month in the year 1978.

That's me *waves*

Between Easter and the end of October I am a waitress in a restaurant in a North Cornwall fishing village. The rest of the year I am just skint. All the time, I am a mother of three boys aged 13, 7 and 5. I have a (vaping, ex-smoker) husband, ancient and smelly border collie called Ash, and even more ancienter and smellier, one eyed cat called Raistlin.

Black cats really are crap in photos

To my knowledge, none of these are involved with the tobacco, e-cig or pharmaceutical industry. (Although I will say, my 7yo is seriously smart and sometimes I would not put anything past him!) I have been to various conferences, to which my travel and hotel (if needed) has been paid for by the organising body or by ECCA/NNA. None of this has been tobacco money. I have never benefited financially, in fact, these things ALWAYS cost me personally, because that gin on the sleeper train does not come for free (sadly) and neither does any food outside of the conference itself. There is a word for those expenses but I don't even know what it is, as I have never claimed it.

Incredibly, although that particular COI might be lengthy and unnecessary, the authors of the response letter were able to claim no conflicts whatsoever. Amazing.

I digress.

There are important points raised in this letter and I would like any reader of this to click this link, and familiarise yourself with it's content.

All done? Excellent.

So why am I not responding to the article via the Lancet? A few reasons actually, A) I would be restricted to 300 words and that is nigh on impossible, B) I don't actually think the editor of the Lancet would allow me the space again and C) this needs to come off of social media and journals and into the real world. So I am going to try and make that happen instead.

Dear Professors Mckee, Chapman, Glantz and Daube,

Thank you for taking time out of your busy schedules to respond to my letter in the Lancet. I am almost flattered that you felt moved enough to write a reply. There are a few things I would like to address. Firstly, it is important to understand that I refer only to 'a part' of public health and tobacco control. I have learnt, in the past two years, that it makes no sense to write people off from the start. Whatever it is that they start by saying, is not enough to say 'well that's THAT then, shan't bother with THEM anymore'. As such, there are a good many in your fields of expertise who we are comfortable talking with and they with us. Even more important to note, is that we do not always see eye to eye with these people, but we do respect the ability to think outside of the well constructed box they have been existing in for most of their working lives.

Social media. Oh it is a funny thing isn't it. I admit to being relatively new to it myself, having only got involved in it again because of my advocacy. It allows instant reactions and responses. Sometimes, those responses are raw and unedited. It has certainly allowed us to talk to one another freely and openly. You could say that many of us wear our hearts on our sleeves when it comes to Twitter. As a result of this, I understand that you have been the recipients of many unadulterated reactions to things you might have said or written. In relation to this, I would like to tell you about something that happened to me in my old job, working behind a bar.

I have worked behind bars or as a waitress since I was about 15, so I am well versed with how people can behave when they are drunk or in groups. I am quite hardened to it in fact. However, on one occasion a few years ago, I was behind the bar by myself, on a friday afternoon as the 'just finished work, not going home yet' brigade came in. Three delightful fellows were sat at the bar, quite merry from their consumption of lager, when they started to make crude comments at me. Now, I am used to this, it comes with the territory of bar work. I deal with it, I move on. Except this time it was aggressive and threatening. They were making demands of me and were leaning over the bar to grab at my breasts. I genuinely felt threatened. In the end, I walked out from the bar into the adjoining corridor beside the hotel reception area (leaving the bar unmanned) and very loudly stated that in no uncertain terms was I serving those 'f*cking C*nts' and that I'd had enough. (Little did I know that a well to-do, diminutive old lady in reception, heard every word of my tirade at the bar manager and very sweetly said 'no dear and you shouldn't have to!'). However, to this date, I have managed to make and maintain many relationships with men, without tarring and feathering them based on the behaviour of these morons.

Now, I have just written that out and realised it does not work as an analogy as THOSE 'men' were out of order, in any world. Although you might not like a lot of what is said to you on social media, these are just the raw reactions of human beings. People who genuinely believe in what they are talking about and are very frustrated. I cannot control how people react, nor what they say or do. Even what pictures they send to you, (I should say at this point I have NO idea about any 'noose' picture). I understand if you might object to an individual or two, but however uncomfortable it makes you, we are the public. It is as simple as that. If we are speaking to you, then it would probably be wise to listen. Certainly you would call me churlish if my extreme example above caused me to ignore all men, forever. You would be right too. I know it is hard to get over being insulted sometimes, but I would ask you to work on it, as there are dividends to be paid. Paid, being something none of the people who are tweeting you are.

Indeed there was an event held on the Tobacco Endgame at the London School of Hygiene and Tropical Medicine, hosted by one of yourselves. Indeed I did not attend, largely as it was not about e-cigs, after all, I am not fighting the tobacco companies (frankly I couldn't care less about them other than feel contempt for their behaviour in trying to restrict the market to the e-cigs they sell). However, three friends of mine did. I am confused by the accusations of  nasty tweets from the event, and I would point you to this blog which, handily, has the tweets from the two people whose phones were working. Now, I am not a member of Public Health or Tobacco control, but my assumption would be that you have rather thicker skins than I do, what with having more criticisms leveled at you than I am ever likely to experience. I'm not wholly sure that these tweets fit in with what you imply. Maybe there are some I missed? I shall say though, that anyone involved in advocacy of any description, is reasonable enough to know that hijacking a talk that ISN'T about their subject matter would be a little childish, silly and impolite. However, the E-cigarette summit has been held for the past two years at the Royal Society and I admit to having seen none of you there. Nor did I see you at the Global Forum on Nicotine in Warsaw. For that matter, I don't think you were at UKNSCC in June. I did see one of your number at the PHE e-cig event earlier in the year, but the attendee seemed distracted by attacking Anne McNeill than interacting with us. An informative day nonetheless.

More and more there are vapers attending many PH and TC events and we would dearly like to see you there, your presence has been sadly lacking until now. In fact, there will be a second Global Forum on Nicotine in June next year, it would be a great opportunity to engage with both sides of the argument and have a natter with those whose opinions differ from yours. As many others in PH and TC (even politics) will tell you, there is nothing to fear and everything to gain. Most importantly, we do not bite :)

If I may be so bold, there are many of us who would like to sit with you in a given place and talk this situation through. I know this offer has been made before, but I understand that it might have been lost in all the other requests from other groups involved in harm reduction. So let me take a moment to ask you again; Would you make time to sit with any of us and chew over the cud before it loses its flavour and this opportunity is lost to all?

My penultimate point is that I must thank you for your recognition of the impact of our 'campaign', though I fear it is far less organised than you think it is. Unfortunately, I think the situation for the average smoker is now less clear than it has ever been. Indeed, it would appear that many now perceive vaping to be as, if not more (10x more!) dangerous than smoking. I feel sure that if nothing else, we can agree that this is a tragedy for smokers and their friends and family, if people who were interested in switching have now decided against it and are continuing to smoke instead. Please forgive me for assuming on your part, but I am certain that this is not something you are happy to see happening. I understand that the health of the public is paramount to you, and the chance for so many to improve it with such a small change can only be something you have dreamed of your entire professional lives.

Finally, yes the debate has moved on and this is something that should be celebrated. It is widely acknowledged that the current measures are not reaching smokers as frankly, they are not interested. How wonderful indeed then, that something has appeared that smokers ARE interested in and is not costing the state a single penny. How best to proceed? Who knows, but certainly engaging with those who understand, as smokers, what this means would be the very best place to start.

Thank you again for your reply, and I look forward to hearing from you with details on how this discussion can be continued in a constructive and adult manner.

Sincerely,
Lorien Jollye.


Thus ends my response, I shall email a link directly  to Messrs McKee, Chapman, Glantz and Daube, thanks to their emails being available here.

Now, let's wait and see what happens next.

UPDATE 23/12/14: 

You will all be surprised to learn I have heard nothing & no invitation to meet has been forthcoming. 

UPDATE 1/1/15

Starting as I assume they will continue throughout 2015, there has been no reply. 

The Right To Reply: or not, as it happens.

Below are responses written to the tenacious, indefatigable even, Martin McKee who has penned yet another scathing, sneering and downright offensive attack on those that have the bare faced cheek to disagree with him. How irritating it must be to know that there are folk that keep pointing out that what you spout to the media is complete and utter nonsense. Seemingly he has nothing better to d....what was that? Ebola you say?

I fail to understand why journals like the BMJ are giving space to unsubstantiated accusations on members of the public. It is also infuriating beyond WORDS to see the sycophants on Twitter, blindly retweeting McKee's article without question of its validity.  

Anyway, these have been submitted to the BMJ in the correct manner, and only appear here as the journal in question has seen fit to disallow these comments about not being allowed to.. Uh.. Comment...so.. yeah.. 

Submitted by me on 9/10/14

Almost a year to the day[1], here I am writing to defend myself and other honest vapers from the same inflammatory outpourings from the same people. What has been learned in that time by those in the very elite of Public Health? Sadly, it appears to be nothing. For the second day in a row, we are subjected to yet another unsubstantiated and unwarranted attack. These continuous and relentless accusations emanating from the upper echelons of those charged with the protection of our health, ceased to be a curiosity a long time ago. We have tried, relentlessly yes, to talk to and deal with the very people who proclaim to all that will listen that we are either Trolls (the definition[2] of which does not actually apply here) or paid industry stooges (be that Tobacco or E-cig). Now we have the added definitions of ‘extreme libertarians’ or ‘deeply troubled individuals’.

Let me be clear. I am not a paid stooge for ANY industry nor am I a Troll. I say this also for the people that I speak to on a daily basis. I would not even call myself a libertarian let alone an extreme one, though I fail to see why that would be an issue; indeed Mckee rather eloquently made the case for them himself.  Am I a troubled individual? Well, yes actually, but certainly not in the ‘unhinged’ manner which Martin implies. I am troubled by the fact that no matter what we do, what we say, we are totally unable to defend against these accusations and still they persist. In fact, given how often we have tried to refute them, I consider them now to be nothing more than lies, constructed in order to make e-cig advocates so very toxic that we are as likely to be spoken to as a tobacco industry member. I am troubled because far from this idea that the use of the ‘block’ button being as a RESULT of contact we have made, it has often been used BEFORE we have been able to say a word. In fact, the author of this smear piece has been un-contactable for more than a year.  As have some of the people I expect to see respond to this article. Yet somehow we are deemed to still be attacking them (challenging their opinion or asking questions), to such a degree that it warrants repeated opinion pieces being published, often behind paywalls so that we are unable to see.

I am troubled as this feels like we are being bullied by people who are untouchable and unreachable yet have absolute authority and the assumed respect of their peers, the media and the public. What are we, unpaid volunteer advocates or lay vapers, supposed to do in the face of this adversity[3]? If there is indeed proof of astroturfing, then I strongly and passionately request that this be made public immediately as we would be as concerned and upset (if not more) as Martin McKee and his ilk are. As yet, despite repeated requests for this evidence, we have seen nothing.

This debacle is serving only to muddy the waters, delay sensible regulation and, worse, create fear and uncertainty in smokers who would otherwise have chosen harm reduction as their route out of tobacco. In truth, the last of these things is the one that should cause the most consternation in anyone who is genuinely interested in the health and wellbeing of smokers. The greatest irony being that the entire movement is in danger of being handed to the tobacco industry through the fear of their involvement in, what appears to be, the least effective part of the market. In the long run, the attention being paid to unjustified scrutiny of us e-cig users, unsupported theories of gateways and gross lack of understanding of the role of flavours, will make cannon fodder of smokers in your war against the tobacco industry. A war we want no part of. Whilst you gaze at your navels contemplating hypothetical fears, millions of smokers have made the decision themselves to choose harm reduction. 

The big question is; how many didn’t as a result of this relentless scaremongering?

---

[1] Full response to the first McKee BMJ article 27.9.13 http://oxle.com/topic.asp?tid=6459

[2] http://en.wikipedia.org/wiki/Troll_(Internet)

[3] Further reading on why Vapers are angry http://www.theindefatigablefrog.blogspot.co.uk/2014/09/the-indefatigable-frog-or-why-this-wont.html

Submitted by Sarah Jakes on the 8/10/14

This is the second article [1] I have read today in which McKee attempts to conflate the e-cigarette industry, libertarian bloggers and angry e-cigarette consumers (vapers) in an attempt to paint the latter group as an astroturf organisation in the pay of either big tobacco or big vapour, which of course to his mind are one and the same thing. Is it any wonder that people who do not have the luxury of being published in prestigious journals such as this get even more angry when being maligned in one?

Either McKee does not understand the public he purports to protect or his comments are disingenuous in the extreme. I know that McKee has read Clive Bates' blog article entitled 'Memo to public health grandees: vaping, vapers and you' [2] which attracted 111 positive comments from consumers and is the most read and shared article on the Counterfactual site. I personally asked McKee to read that article because Bates has absolutely nailed the thoughts and feelings of vapers on the head, as is evident from the comments. My request to McKee to read it was a genuine attempt to create some understanding between our two sides. He confirmed that he'd read it, but the message appears to have fallen on deaf ears. 

McKee is completely entrenched and out of touch. He is of course free to disagree with Bates' article, but cannot deny the fact that it has the widespread support of the very people who are its subject. McKee has himself researched a member of the public and indeed uncovered the shocking fact that one Twitter user (who uses his own name and very colourful language) is a freelance writer who sometimes gets paid to write positive articles about e-cigarettes. If he'd researched further he may also have found that this is common knowledge, as is the fact that the person is a British ex soldier with several tours of duty under his belt, which probably explains the liberal use of creative profanities. One, sometimes foul mouthed, squaddie with a genuinely held belief that public health will kill people doth not an astroturf lobby make.

There appears to be a concerted effort by some in public health to deliberately make false associations between a genuine grass roots consumer campaign and organisations with commercial interests, the more malign the better. This of course serves two purposes, firstly, it undermines the voice and views of the public by instilling  the false belief that their views are paid for rather than their own. Secondly, it allows those in public health who are apparently unable to control their own behaviour to keep their jobs due to "mitigating circumstances" - those circumstances presumably being that they were baited into calling members of the public "c**ts" and "onanists" by industry shills with agendas [3]. 

One thing is for sure - if McKee and others continue to provoke vapers with false accusations whilst failing to engage with them on the issues which are important to them, the relationship between the two sides is only going to get worse, and PH will only have themselves to blame. If your job is public health and you find that the public are angry with you then you really should be asking yourself a question - and here's a clue - it's not "who is paying them".

[1] Martin McKee - Peering through the Smokescreen http://pmj.bmj.com/content/early/2014/10/07/postgradmedj-2014-133029.extract

[2] Clive Bates - The Counterfactual - 'Memo to public health grandees: vaping, vapers and you' http://www.clivebates.com/?p=2391

[3] The Times - E-Cigarette debate Heats up in online War of Words http://www.thetimes.co.uk/tto/science/article4200758.ece

Statement from the Faculty of Public Health (now removed from the site):  "The Board has registered its strong disapproval of Professor Ashton’s comments, whilst noting the mitigating circumstances. The Board also agreed that Professor Ashton should continue in his role as President and has given clear direction on the necessary steps to support his return"

The War with the Fnools PT 2

Thank you for joining me for the 2nd part of this bi-blog special. Part one is underneath this post.

Funnily enough, I am writing this part not long after Robert West's data appeared and the media went into meltdown. Most notably The Guardian. If you haven't already, read it now. That is not a request!

Back to the PHE meeting.....

We already have an idea of what The Chief Medical Officer, Special Scientific Advisor to the Governement, Dame Sally Davies, thinks of vaping thanks to this article in the New Scientist. However, I was not prepared for what I had to endure for her presentation. 

She is still having some aversion issues with using the word Vaping. It upsets her that word. So does 'vaping lounges' apparently. Sorry about that Sally (I'm not, 'grow up' springs to mind!). Her entire sermon seemed based on her power and influence which she was at pains to remind us about...over and over...

As CMO she 'is protecting the population',

She has 'written to all ministers as Senior Medical Advisor' (She verbally underlined that),

She is 'worried, and I tell you this as the head of this profession'.

There were a few more of these, but frankly I got bored of writing down her attempts to continually remind everyone that she is their Boss, that there is None Higher and because she is worried, we should all be worried. Cos she told us to be.

God Complex anyone?

A few other telling nuggets were;

'Horrified' that ecig packets could be emptied out and tobacco cigarettes could be put in.

Normalisation and Glamourisation were proved conclusively by her daughter (of undisclosed age) 'dragging' her to an e-cig display to show her 'how beautiful they were'. STOP PRESS! In light of this new evidence, I feel the only appropriate thing to do would be to redesign all e-cigarettes to look like turds. 

I think it is only reasonable, after all, smokers to do not deserve beautiful things. Aesthetically pleasing and tactile devices they might WANT to use. No no no, you must feel the shame of being medicated.

mmmmmm tempting

Then we got the classic,

'Willfully aimed at children, who wants flavours?'

Well actually, now that you mention it...

This was the sweet table at my wedding. Do you know who had the biggest bags of sugary loveliness? The adults. They stripped that table. (Yes, that is Hubba Bubba)

Bought these on Saturday - cos I like Sherbert & Liquorice.

I figured I might as well ask Twitter too...

Yeah so quite clearly, no one likes flavours.... Oh and do checkout www.cybercandy.co.uk and have a little looksie at all the product reviews. If you have time, you can message all those adults and tell them that they do not like flavoursome things after all and that maybe they would like some of those Dog Breath crisps that are so popular.

There is one thing that was said during her diatribe though. One thing that should define this woman as the menace to public health that she is. In her position as absolute authority for Public Health in this country, what do you think her message is to smokers? All 9 million smokers. For whom she does not want to allow the option of harm reduction, but also admits that NRT fails.

Her message?

'Smokers should just grow a backbone'.

And there it is. Quit Or Die in the starkest way I can possibly imagine. If you are not disgusted, you damn well should be. THIS is the callousness we knew existed, but did we realise that it sat RIGHT AT THE TOP? Advising government? Influencing the opinions of Public Health? It is repugnant. This woman cannot protect public health when as far as she is concerned 20% of the population can just die due to her unfathomable ignorance.

I have nothing further to say on this woman. Nothing.

So instead, lets touch briefly on McKee. 

'Cherry crush candy leads to smoking'

'Insecticide' 

He does 'not even know why were are having this discussion'

'We WILL catch up' with the forward thinking of New York and Australia. This is the future (and it really is not bright).

He was perplexed as to why a symposium on e-cigs was not covering Plain Packaging.

And then. Oh yes and then...what could Martin Mckee possibly say? What could a Professor in Public Health have to say when it is clear he has nothing? When the subject of nicotine use in pregnant women was raised, after it was made clear that NRT is of no use and nicotine of no real concern (by actual experts), what is the most inappropriate and desperate comment that could be made?

'That's what was said about Thalidomide'

The response to this was immediate, and unsurprisingly it was not good! People were heard to say 'disgusting'. This was boo'd, and rightly bloody so. 

For the record, Martin Mckee, you should be ashamed.

As such, I would like to present to you, ladies and gentlemen of the audience, The Fnools. Definitely not a typo, but a race of aliens in a short story I read many years ago by the genius Philip K Dick. The Fnools are 2ft high aliens hell bent on destroying humanity and taking earth for themselves. But thanks to their piddling height, were easy to spot and so were usurped at every corner. Their mistake was a simple one, they looked exactly like us, but had got the height wrong. Ironically, in the story, their undoing comes at the hand of Tobacco, Alcohol and Sex. One of these vices is discovered by them and immediately, they grow 2ft, to a still paltry 4ft, but nevertheless rather unnerving. The second vice adds another 2ft and so now they stand at 6ft and are perfectly hidden among us mere humans. Alas, with victory within reach, they encounter their 3rd vice, and unable to resist, find themselves standing at 8ft tall. Clear for all to see. The proverbial thumb. There is no hiding and they are clearly visible for what they are. Inhuman. Now easily targeted and destroyed.

The Fnools thought they were winning. and they went too far and exposed themselves. 

This is what we just witnessed. It is what every member of public health and tobacco control with a conscience and a genuine desire to do good (whether we agree on the methods or not) has just seen. Trust me, it is not just our stomachs that were turned. I would not be surprised if this behaviour was what broke the camel's back for Robert West. 

So maybe, we should say Thank You To Mckee, Davies and their ilk. They just did us a great favour.