For A Safer Internet

Today I would like to share a guest post with you, by my friend Colin, who is one of those I.T. people.

Last Tuesday was Safer Internet Day and I asked for a post explaining the importance of the projects that Colin is involved in – hopefully stirring up some interest in terms of staying safe online.

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Hello

My name is Colin.

You may notice that I am not Maz. You may further notice that I am, in fact, Colin. You have likely gathered this from up there when I stated it.

A brief introduction, then. I’m a Software Engineer¹ for a cyber security company, and I volunteer for a social enterprise programme² for which young professionals go to schools and teach online safety. I’m not going to give the names of either of those things, because then I’d probably have to check with them whether it’s okay to do a thing on someone’s blog, and that sounds like a pain. So I’m going to speak in generics, and specify that everything I have written here is entirely my words with no influence from anyone else. So there. [I have added headings, links and images for your reading pleasure! - M]

Is it secret? Is it safe?

You may not have realised it – it’s admittedly not one of the most famous special occasions – but on February 5th, it was Safer Internet Day. I, therefore, was at a school in London teaching online safety as part of that voluntary shindig, a topic that is growing more vital by the day. If you frequent the technology news on the BBC website, you will have seen this crop up again and again. Heck, you probably see it in the flesh. People creating Facebook groups called “I lost my phone, please post all your numbers here” that are publicly available, or birthday events that everyone can see. And that’s people our age [which is twenty-somethings, by the way - M].

I keep my Facebook pretty locked down (I hope), because it turned up during my university days and I don’t really want people to see photos of me irresponsibly drunk, wearing a ridiculous hat and/or wig, giving my best impression of The Salmon Dance³. It wasn’t fun going through trying to cover up all traces of university foolishness – but it could be so much worse. What if Facebook had my entire childhood on it? Photos of me with yoghurt all over my face? Calling people a poopy-pants? Making unfounded claims about people’s mothers⁴?

The next generation are allowed to join Facebook at the age of thirteen⁵. So it’s going to be hard for them to escape who they used to be – the internet will remember with alarming accuracy [hey, look, Geocities! - M], regardless of them moving schools, going to University, getting a job, whatever. And here’s the scariest part: that’s the most trivial of the implications. There are very very nasty people out there and they prey on our those most vulnerable citizens. Do you suppose 13 year olds think about all this?

I don’t think they do. I’d like to make a difference.

Stepping up

Let me be completely honest with you. From a selfish perspective, I’ve gained a lot from being part of this initiative. It made me stand out at work, helped me develop my soft skills, and meant I got to do some pretty awesome stuff like speak at the House of Commons⁶ and do an online safety workshop with a London 2012 Olympian. My company allows me time out of work to do it, so I don’t lose out in terms of holiday allowance or money.

That’s sure as hell not why I do it, though.⁷

Can a one-hour workshop make a real difference to lives? Who can say for sure: hopefully at least it plants the seed that starts them thinking about what they do online. Certainly the topic keeps cropping up in the news, and I can tell you I’ve never asked someone if they’d like me to do one of my workshops and heard back “no thanks”. More importantly, the kids certainly never look bored. So there’s definitely an appetite for what I’m doing: hopefully that implies it’s useful. My gut feeling is that this matters.

I’m not sure exactly what Maz wanted me to write about beyond “your voluntary school stuff”, but hopefully this is the sort of thing she was after. I haven’t named any organisations (although you will be able to find those names out with the tiniest amount of digging I’m sure), so this isn’t me doing a sales pitch and trying to get more people involved. In fact, I think the initiative is growing pretty well without my intervention. And I also know that not everybody has a passion for this stuff. So what am I doing blabbering at you?

Hopefully, inspiring you a little. It’s tough to make a difference: sometimes it feels like that’s something you can only really do when you’re rich and powerful. But there are certainly ways you can try to make a difference, and hopefully, build up a reputation for yourself at the same time – maybe you can make an even bigger difference later?

At the heart of all this, I’m just determined to be one of the ones who gives back more than he takes. I think that’s the attitude everyone should have. I hope you do too.

Comments? I’m @colinmpowers on Twitter. If you look me up, pretend my profile does not blatantly list the names of the organisations I decided not to name earlier. Cheers.

Notes:
[1] That means “Code Monkey”.
[2] That means “thing”.
[3] I made that example up, but it wouldn’t surprise me if it actually happened and I’ve just forgotten about it.
[4] This one may still be valid today.
[5] Which means they sign up at about age 10.
[6] Only one of the small rooms in it though, not where PMQs happens or anything.
[7] Well. Maybe a little.

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Thank you for reading Colin’s post and do leave a comment below/get in touch with him if you’d like to learn more. Stay safe on the interwebnets, all.

2012 review

The WordPress.com stats helper monkeys prepared a 2012 annual report for my blog; that’s nice!

Here’s an excerpt:

4,329 films were submitted to the 2012 Cannes Film Festival. This blog had 31,000 views in 2012. If each view were a film, this blog would power 7 Film Festivals

In particular, I like the views map. I had visitors from 141 different countries!

Click here to see the complete report.

LGBT+

I don’t know why I suddenly started thinking about this (and asking Twitter about it) today. But I did, and the conversation was quite good, so I wanted to write a post. It’s kind of about labels and acronyms and diversity and inclusivity and other things – choice, importantly. A bit of privilege. All those words that crop up a lot when you move in “liberal” kinds of circles. And like thinking about issues. Also I propose a competition! Read on…

For the uninitiated, if you have no idea what I’m banging on about and need some definitions, I wrote a Background section at the end for you – if you’re open to learning something today, that is.

So, somehow there began a tendency to define some sexualities and gender identities (I find it interesting that the two seem to go hand-in-hand still, despite the increasingly clear message that one need not follow the other) and lump those definitions together in acronyms/initialisms. I don’t profess to know why that happened, but I have some of my own thoughts on a) why people choose to identify with certain labels and b) how that can be useful to them.

Acronyms & Initialisms

I asked Twitter for people’s thoughts on the use of “LGBT” vs. longer versions like “LGBTQQIAA” – lesbian, gay, bisexual, trans*, queer, questioning, intersex, asexual and allies – if you’re wondering. Again, skip to the end for more on the details of those labels.

Obviously the longer version is quite unwieldy, perhaps not easily remembered and sends a lot of people into a strange rage because they don’t know what you’re talking about (ask?) or have for some reason turned into an Express reader who’s annoyed about the “PC brigade”. Apparently an option growing in popularity is GSM (gender & sexuality minority).

For me, the lengthier initialism (which could be even longer, actually) proves a point in itself; there are so many types of people (when we’re concentrating on gender identity and sexuality alone) that the use of such categories begins to lose meaning once you open your mind to that fact.

The longer version also introduces the people who do decide to ask to previously unknown concepts. In our conversation yesterday at least 3 people replied asking about the 5 letters at the end. Education is generally the first step in promoting understanding and tolerance, so surely that’s a good thing?

I really enjoyed having the discussion. I think it’s a good way to increase awareness, the capacity for welcoming environments, and helping people to feel comfortable in explaining their own views and stories, with the result of, hopefully, reducing prejudice and discrimination.

For funsies, here are some christian folks freaking out about all these heathens, because it will obviously end up with human-animal partnerships and worse (however, skipping to the end of that post, noting that the writer is an attorney is less amusing).

A competition

Given acronyms tend to work better, being pronouncable words, can you come up with some using some or all the letters? To choose from you could have any or all of the above plus some extra Bs and Gs (bigender, genderqueer/genderfuck etc.), P (pansexual), particles (and, in, for etc.), bits of words (e.g. Bi) and anything else you can justifiably think of.

To kick off, there’s a (fairly well-known?) one that was sent to me by @bishtraining: QUILTBAG.

And that one’s for Queer, Questioning, Unidentified, Intersex, Lesbian, Transgender, Bisexual, Asexual, Allied, Gay and Genderqueer.

Gender And Sexual Minority And Noble-minded People In Solidarity and Support: GASMANPISS, simple. – @jonny_boy27

Please post your acronym suggestions (serious or otherwise) and what they stand for in the comments below! Personally I think I’ll stick with LGBT+ for now.

Conversations

I’ll just put some thoughts forward as prompted by people’s tweets from here on, and if you’ve something to add about any of the points, again please do add it in the comments below!

I think it’s more helpful to embrace people as individuals. We won’t have true equality until we stop having to fit an “identity” - @DPWF0

While I agree it’s ideal to just take people for who they are, each separately, it’s also the case that lots of people like to have an identity. We all do, and how we define ourselves comes in different forms. People can and will choose labels for themselves. They could be hobbies, jobs, nationality/ethnicity, religion, sporting allegiances, even disabilities… subscribing to these kinds of cultural communities can offer people support. We often like to share experiences. Birds of a feather.

Martin had some objections to the ever-expanding initialism usage, specifically that it’s chiefly defining a ‘majority’ (cis heterosexuals).

But does such a majority even exist? What is it? Are there really so many 100% cis hetero people around? We both suspect that a lot of people, given a different environment (i.e. one that’s more aware of these issues and tolerant of the spectra involved), would be less inclined to so rigidly pigeonhole themselves into what is traditionally the ‘normal’ category (obviously I strongly object to the use of normal in this kind of discussion).

However, it seems to be quite likely that cis & hetero is at least for now the most common “skin to be in” and we may as well assume so until we have evidence to the contrary. Which perhaps makes the shorter xyz minority initialisms preferable.

Everyone but..?

Perhaps we’re reaching that almost ideal situation where it’s so uncommon to be bigoted about these things that it’s no longer necessary to define as “other”, because having a problem with something you don’t need to have a problem with is actually the most notable characteristic. The ideal situation obviously being a zero-bigotry one.

can that not just be reduced to “everyone but the bigots”… I take some issue with people rejecting labels because “we are all individuals” who have the luxury of rejecting them. – @endless_psych

Absolutely agree with this – it’s good if you say ‘differences are irrelevant to me’ – you are confident in yourself and other people’s choices, you probably treat people well as a result. It’s always nice when people can ‘come out’ to their friends about things and get a mildly surprised (or not) reaction coupled with not caring. It’s nice to know your friends well, and sexuality may or may not be a part of that, but it being unimportant is often a relief, given what some people have to go through.

But not everyone has the luxury of finding differences irrelevant; people facing discrimination, isolation, rejection and hatred have the ‘relevance’ of their difference pointed out to them in horrible ways. Identifying the bigotry, what it’s targeted at and why it’s unacceptable is important.

Activism

It’s all very well saying “we’re all human/people” but not everyone believes human rights are universal, still, and if we’re to continue pushing for their application to everyone, groups who face injustice need to be able to campaign on specific issues. Otherwise nothing would ever change. Having a banner to unite under can help to bring about changes for the better for specific groups, via increasing recognition:

esp if that recognition is bound up with state support and sciences e.g. The #Transdocfail tweets – @drdaveobrien

An article here on what that hashtag revealed, although not news to some.

Invisibility is a problem for minorities that is caused not just by the majority but also other minority groups. I’ve written about bi-erasure coming from the gay/lesbian community previously. By denying someone’s claims about their own identity, you are only serving to support any discrimination they face, and in no way helping their struggle – which may be very similar to your own.

I think one reason for the expansion of the acronym is the inevitable failure of labels… To define a ‘Lesbian and Gay’ society, other groups become more visible by their absence. - @anandamide

Which fits perfectly with an article I read the other day about some universities in the USA and their student groups, from the POV of Stephen, who identifies as queer.

All of this finally led me to reading a bit about “intersectionality“, a word that’s been doing the rounds lately because of certain incidents. Sociology of the day!

Worries

I don’t think I agree with these concerns really, but I see where they’re coming from, and again am interested in others’ views. Regarding the longer initialism:

It’s unwieldy and few will ever know what it means. As EP said, it’s everyone but bigots. I’m sure it has it’s uses somewhere … Just not sure it’s ever going to be useful in combating prejudice in the wider public. - @frozenwarning

I’d go as far as to say that the increasingly complex ‘in-group’ language risks alienating the public… The easier it is to screw up by not knowing the right terms, the less well-meaning people will want to speak. - @mjrobbins

Again, please chip in below.

Some background

When it comes to sexuality, the world is clearly not only populated by heterosexuals (people who are attracted to people who identify as a different gender from themselves), whatever some conservative/religious types would like to believe. There you have your L for lesbian and G for gay – the homosexuals, or people who are attracted to people who identify as the same gender as they do. Most people are now familiar with these labels, and most are fine with it – but not all, there’s still nasty homophobic prejudice floating around.

For your B, the bisexuals; those attracted both to people who identify as the same gender as they do, and to those whose gender identity is different from theirs. A little more complicated, as the inadequacy of the gender binary means this doesn’t have to just include cisgender individuals, it could include trans* peeps too – some may therefore choose to identify as pansexual or omnisexual – though these don’t come into the main initialisms discussed here.

As for the T, that’ll be trans. Generally shortened to trans* now, because there’s a lot more to gender even than is widely thought at the moment. See here, but there’s also plenty of disagreement about it, and this post discusses that. Gender is a simple concept for a lot of people, as that’s how we’re taught, usually, growing up. Man/woman, male/female. But that’s not always adequate. Sometimes people’s bodies don’t match the gender they feel they are, if indeed they choose to acknowledge gender at all – most of us are lucky and things mostly match up, and there’s a term for that: cisgender (or cis for short). For those whose gender identity and physical gender are at odds to some degree, we can say transgender (from the Latin cis- prefix meaning on the same side, and trans- meaning on the opposite side. [Bio]Chemists will be familiar with these).

Moving on, there’s Queer – the old insult that has been reclaimed for people who prefer a less restrictive label but wish to identify with an “atypical” sexuality/gender ID group. Questioning has a variety of definitions; unsure, actively looking for something to settle on, or rejecting available options. Intersex is anyone whose genitalia are ambiguous to whatever degree; neither fully ‘male’ nor ‘female’, which is more common than often thought (unfortunately these people are subject to genital mutilation without their consent, which can have terrible consequences). Asexual is what it says on the tin – it’s perfectly valid for people to be uninterested in sex. This is often derided and pathologised, including by some in the so-called sex positive community, which is irritating.

Allies, finally, being anyone who is willing to fight against discrimination based on any of these things.

Edit: here’s a good video about it from a while back

Fish in a barrel

This is a guest post from Ian (@teachingofsci), which I think is a calm demonstration of why so many who try to engage with proponents of alt med end up seriously lacking a feeling of calm.

I have had similar situations in which I’ve tried to converse with otherwise intelligent, rational, friendly people, who have shouted that they will not read anything I ask them to read before we can continue the conversation with a bit more information behind us. If people are unwilling even to look at evidence that might not support their view, what’s the point, really?

Different people have different ways of going about skeptical activism, and advocating rational thinking – often with an ultimate goal of protecting gullible and vulnerable people from those who would profit from their ignorance, and perhaps simultaneously endanger their health. I don’t believe there’s a right way, but sometimes this kind of tactic can prove useful. Enjoy!

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Following the BBC exposé showing that some companies and pharmacies are still selling homeopathic ‘remedies’ as if they worked as vaccines for serious illnesses (summarised at the Nightingale Collaboration), I saw some retweeted comments from @JessPinkus. Some of them were quite aggressive, and her stream included one directed to @drwollastonmp suggesting doctors recommend vaccines to make a profit. I found this quite ironic. She and many other fans of alternative medicine often raise the ethical issue of potentially damaging treatment for children. Medical professionals always consider this risk, which in most vaccines is vanishingly small. But she exaggerates this for real vaccines yet fails to apply the concept to homeopathy. It is legitimate to raise the side effects of vaccines, but only if compared to (a) vaccine benefits and (b) risks of (ineffective) homeopathy.

It’s reasonable to say that as the daughter of Tony Pinkus (of Ainsworth’s ‘Pharmacy’) she has probably been brought up with a fairly biased view of the usefulness of homeopathy, and feels she is defending her family. She pointed out that even though unvaccinated she has not suffered from pertussis, failing to recognise the protection she is offered by everyone else’s herd immunity. I’d like to place on the record that I am sure she is sincere.

That doesn’t mean she’s right.

After swapping a few tweets, I invited her to send me pro-homeopathy info, which I would read and comment on. In exchange I suggested she read and comment on Ben Goldacre’s 2009 piece in the Guardian. I would then blog about both sources and responses. She agreed and I shortly received an email with her comments and three documents as pdfs.

She then tweeted that she didn’t want me blogging it, didn’t want me to include her email and didn’t want her name mentioned.

Well, perhaps she misunderstood and thought I meant her email address, which obviously I would never share. But just in case she meant the text as well – despite agreeing to the original proposal – I shall summarise her response rather than quote it.

Comments on “Against” Evidence

I should emphasize that my correspondent did not actually engage with any of the ideas in the article. She wrote that she hadn’t read it properly, because she had read loads of similar things before. Instead her email made several points, which I have paraphrased.

• Medical companies have a vested interest in keeping people ill to sell more drugs.
• Homeopathy cures people and their symptoms disappear (correlation not causation, regression to the mean).
• Drugs companies fund groups including the BBC (my emphasis) to criticise homeopathy (conspiracy theory).
• Homeopathy is popular which proves it must work (appeal to popularity).
• We can’t criticise homeopathy by asking for data, because that can’t contradict the experience of patients (anecdotal evidence).
• Homeopathy is a choice and people should be allowed to make their own choice (she did not specify an informed choice).

I think the links sum up my thoughts quite clearly…

“For” Evidence

The three papers that were attached included a highly speculative model of how homeopathy might work, and a study looking at measured changes in EEG graphs when subjects were exposed to remedies. The last was effectively an advert from the Society of Homeopaths, but fails to make clear that their ‘meta-analyses’ only reference positive studies. They have still failed to produce evidence to contradict the 2005 Shang study, as Alan Henness has explained in the BMJ Rabid Responses.

Conclusion

I didn’t change her opinion. She didn’t even read the article I sent. I should have heeded the excellent advice implicit in the classic xkcd cartoon.

I did, however, get a fresh reminder about how so many people prefer anecdotes to evidence. It also encouraged me to look at this specific case with interest. While defending her father she linked to the letters published by the BBC. I feel these show very carefully chosen wording, perhaps designed to evade responsibility while still giving a clear recommendation for ineffective products. He presumably had this adjudication from the ASA in mind. (For other claims by Tony Pinkus you can see an article on homeopathy being used in Cuba.)

The real point I failed to get across is that the use of homeopathic medicines – even if the choice is truly informed, which is the last thing adherents want – really does have side effects. It limits effective medical care, and it affects society in the form of endangered children and adults. Despite appearing cheap, its failure to have any non-placebo effect means it is far less cost-effective than actual medicine. And if we allow homeopaths to use the language of ‘patient choice’ unchallenged they will continue taking advantage of the vulnerable.—

You can see Ian’s blogposts over on his site, here.

Finland

More like WINland!! Sorry, I’ll get my coat. Which is nice and dry in this fantastic heated cupboard near the door.

By some weird and wonderful twists of fate from Summer/Autumn 2012 I ended up travelling to Finland in December for a New Year holiday. Quite out of the blue, and, for me, scary, I wanted to go for the company, a chance to do something unusual (New Year celebrations are almost always a huge anticlimax, I find) and to see a new and exciting place.

As I’ve said (now several times) before, I’m not well-travelled and I get really anxious when big trips are coming up, especially if they involve flights. Fortunately, not a single thing went wrong on this one! So hopefully I’ll be less worried next time. One flight-related amazing thing was that Norwegian now has Wi-Fi in-flight!! Internets on the plane! It’s the future.

Holiday!!

So, upon landing in Oulu to meet new friends on Boxing Day, the first thing to notice is that there’s snow everywhere! Which is brilliant, I love snow, and we don’t get nearly enough of it here in the south of England. Snow is one of the few things that still brings a childish kind of joy to me. Still, after two flights and an early morning, that was not the time for messing about in it.

The next day we started our road trip up to Levi, a resort up in the Arctic circle in Lapland, where we’d rented a Levikarpalo cabin (pictured on the site!). As I said, loads of snow around, so at first it was a bit scary being driven around on a layer of the stuff, but after a while it was fine, even going at full pelt up the motorway when you couldn’t see the lines and only little red poles sticking out of the side verge told you where the ditch started.

Stopping for lunch was fun, Prisma has a most excellent logo! I don’t usually eat fast food but being hungry and on holiday I went for a ryebread-encased treat in Hesburger. I liked it so much I had a similar thing on the way back. Good job they don’t do them here, I’d get fat.

I noticed a couple of things on the trip, aside from generally marvelling at all the snowy pretties. The houses, where there were any in their little clusters, have ladders up to the rooves so the snow can be cleared to stop them caving in.

There were also very nice, tasteful christmas lights here and there in a tree, bush or around a window – usually all in each string of one colour, often blue, white, red or green, and sparingly. The effect with all the snow around was lovely; a refreshing change from the glaring, tacky stuff we tend to see here.

Upon arrival, just after driving through the nearest town Kittilä, we were greeted with the lovely sight of the Levi world cup slope all lit up in the dark. Very festive and magical and exciting.

Based on the pictures and description of the cabin, we were expecting our bit to be quite small. On the contrary, we spent a while just running around it generally going “squeeee!” because it was really big and shiny, particularly with the shower room/sauna, kitchen and comfy lounge.

Now, one of the best ways to chill out has to be getting naked to shower with some people you just met the previous evening/that morning, then sitting around chatting in the sauna. We even went outside in our towels and one of them rolled in the snow – I wasn’t quite that brave, but we ran back inside to warm up again and all was well. Time for celebratory bubbles!

Snowshoes

On our first day we went to hire snowshoes and took the gondola up the hill (to the right of the slope in the picture above) and had a trek around. My hand nearly fell off from the cold but I had to take pictures because it was an amazing landscape up there. So many layers of snow covering the ground, the trees, the ski lifts and powerlines and cabins.

Our mapbearer led us to one cabin that really just looked like an iced cake even upon closer inspection. But off came the snowhoes, we went inside and… a fire! Lovely. Picnic stuff was unpacked, sausages for warming over the fire (with the toasting forks dangling around the sides of the room) and hot juice from the thermos.

All over the wooden walls people had scribbled their names, dates, relationships 4 eva and so on with charcoal. After that nice interlude, we started to make our way down the mountain. Eek!

The moon was an amazing shade of red as the sun set (probably at about 3pm, having come up around 10:30). We trudged down, I wondered how much snow there actually was, as I saw the tops of trees poking out sometimes and got a bit worried about sinking (which I did a bit once or twice).

Apart from getting very hot from all the layers and weird exertion, it was loads of fun, especially when trees decided to throw some more snow at us from above. I was glad to sit down in the bar afterwards though!

HUSKIES

Our host did a most excellent job of calling a husky park and negotiating a special trip for us; we were driven there, given a snowsuit, boots and gloves and had a fantastic outing feeling like it was just the 4 of us out there (with 1 sled between 2) – it may well have been.

My passenger/driver demonstrating the vehicle

The dogs were as noisy as I was expecting, they get so excited before running. After a slightly terrifying tutorial about how to stand, lean, break and switch drivers, we set off across the frozen lake covered in a thick layer of snow. It was at least -24°C that day and the cold air on the only part of my face that was exposed was indeed cold. The coldest it got the whole time we were there. It’s quite strange to feel your eyes getting covered in ice crystals as you breathe. But I grinned under my scarf thingy the entire time.

All we could hear was the sled going along and occasionally our snowmobile guide dude, who was blocking the other paths so the dogs took us the right way. They’re silent while they’re working. We swapped passenger/driver halfway around 3.5km out. The snowscape was quite surreal and amazing through the forest. 7km was the perfect time – enough to take it in and enjoy driving and riding, but not so much that we got bored or froze!

The lovely people then took us to a cabin where we got a sausage to cook and hot tea/coffee/juice options to warm up. The walls had memorabilia from their races and some old equipment like wooden snowshoes and skis. All very nice – then a lady came in and asked if we’d like to meet the puppies? YES!

I love dogs anyway so this was a highlight for me. The Alaskan malamutes were so sweet, long one of my favourite breeds anyway, I had a cuddle with one through the fence and it cuddled me right back. D’aww. Very well-timed as a coachload of tourists turned up just as we were leaving.

Festivities

Other fun stuff we got up to included going out for dinner; I had some king crab! Having watched documentaries about how they’re fished, I had to go for that, and it was indeed tasty. More of a Norway thing but hey – new foods. We were also treated to some elk stew by our excellent host, as her dad’s hunting party had recently got one and she brought some meat along. The salted salmon was also yummy. On New Year’s Eve we had raclette for dinner, which was fun.

We needed some good food after the day’s activities; I actually strapped myself to some skis and slid around for a bit; cross-country ones, that is. Knackering stuff! Much respect to my friends who enter into races on those things. Then 4 of us trekked up behind the cabin to a small hill, filled some black sacks with snow at the top and slid down it a few times. Obligatory snow-angel, flailing around in the white stuff, kicking trees and so on. Looking out the window now as it’s snowing in London a bit – not quite the same!!

To bring in 2013, obviously we had some alcohol – if you’re flagging a bit and it’s still early, try Bailey’s in your coffee. You could also add some Minttu, which is 50% and (obviously) minty. Very tasty! We also partook in the New Year tradition of molybdomancy, or Bleigiessen as I’m more familiar with it – you may be too if you’ve been to the Wellcome Trust building on Euston Road. We melted some metal horseshoes in a ladel and poured them into a bucket of water, then had a look to see what our ‘predictions’ were… I’ve decided mine looks like Schnappi, though I’m not sure what that means. Trip to Germany?

On the drive back we had to avoid some reindeer trotting along the road, I saw a guy ice fishing (was planning to have a go but they were charging for the lake nearest us and we had a drill but not rods, so meh!) and watched my fellow passengers sleep a lot.

Various observations

I loved how quiet everyone was! In a supermarket, out in the little market centre, on the bus – if people talked, they kept their voices down, no louder than necessary. An occasional child shouts to their group, but no unruly kids either. Perfect for me, I’m generally quiet and get quite pissed off with people shouting to their friend who’s right next to them!

We became fond of the Finnish mustard, it’s tasty. Also this juicey version of mulled wine called glögg. Even better with a splash of spiced rum added! It was also quite surprising to go from -24 to +1 in a couple of days, I expected it to be hoving around -20 the whole time. Oh and apologies to the Finns for our terrible singing – but it’s their fault for bringing SingStar…

Scandis really, really love the Moomins. And Angry Birds (as Rovio is a Finnish company). So lots of kids had Angry Birds-themed ski gear, and we spotted loads of Moomin jumpers in the airports. Partner who is something of a linguist was also surprised that Finnish does bear minimal resemblance to German and English sometimes, having anticipated understanding/connecting nothing at all!

Edit: Forgot a couple of things. Some of my friends complain about how fast I walk - well, you should try being there, they outran us!! It’s to keep warm, y’know. You should try it. Also, our radio station of choice was quite entertaining. A few blasts from the past, stuff like Maya – It’s All ‘Bout The Money (all ’bout the dumdumdududidum…).

—

I’ve thought for a long time that I might like to retire to Canada or somewhere similarly chilly, and this holiday has certainly given me some proof to base that view on. Unfortunately we missed the northern lights this time, but that’s just a good reason to go back – hopefully to see some of Norway next time, and Sweden someday too

ALL the trials!

Be aware of this new and incredibly important campaign: alltrials.

It’s time all clinical trial results are reported. Patients, researchers, doctors and regulators everywhere in the world will benefit from publication of clinical trial results.

Please sign the petition

Please do. Doctors cannot prescribe the most suitable treatments, if they don’t know what the most suitable treatments are due to lacking information. Patients therefore suffer. Academics cannot plan their research effectively without knowing previous results. The government cannot make appropriate funding decisions without this information, either.

So, help to make ALL clinical trial data available to everyone who needs it – all of us.

Edit 05/02/13: GSK have just signed up! Amazing! Ben has written a quick post on it and here’s the alltrials news.

Here’s a bit about why alltrials is important, in the form of a write-up of Dr Ben Goldacre‘s talk in late 2012 for Soho Skeptics (albeit in a King’s lecture theatre near Waterloo…).

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Bad Pharma

Obviously the title of Ben’s new book, which I’m sure he will be happy for you to buy!

So the main problems are: withheld trials; poorly designed trials and ignoring opportunities to run them; the failure to distribute results.

Evidence-based medicine (EBM) incorporates: fair tests; good analysis; spreading information. So, as it stands, a lot of non-evidence-based medicine seems to be going on, and not just from the usual quacks.

Drug development is a tricky business, and an extraordinarily expensive one. But sometimes a new drug gets through the early stages of testing to the point where we need to see what happens when it’s given to people. A famous example of how not to do this is now the trial at Northwick Park hospital (very near where I live now, incidentally) back in 2006.

Groups of patients are not given doses of experimental drugs in quick succession precisely for this reason. If the first has a severe reaction, quickly, you avoid causing it again! Apparently, several years before this a similar molecule was tested, but was abandoned. However, because the information wasn’t published, the warning was hidden. Although immunologists may find universal T-cell activation to be an… unwise pursuit regardless.

The European Medicines Agency (EMA) should have a registry of all European trials, but there are still several thousand missing. 14,000 phase 1 trials are hidden.

In the 80s, anti-arrhythmia drugs were prescribed for irregular heart rhythms following heart attack to prevent deaths. However, 130,000 people died before people noticed it was having the opposite effect.

The Cochrane Collaboration, with its “dead baby forest plot” logo (I think you had to be there, it was funny at the time), was established in the 1980s to comprehensively check results using databases of publications. This allows for systematic reviews and meta-analyses, and, forest plots! From these we can draw a conclusion based on all the evidence available on whether a treatment is effective, has no benefit, or is actively harmful. That allows us to make the best decisions, that is, based on all the information and not what might be a misleading subset of it.

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Studies were also withheld regarding Edronax/reboxetine having no benefit or being worse than other available antidepressants. The German version of NICE (IQWiG) made Pfizer show all the data so that doctors could stop potentially harming patients by prescribing it. As a class of drug whose efficacy is constantly debated, a class I have tried myself (briefly and unsuccessfully) and a class many of my friends use, examples like these are particularly distressing.

The existing model that includes poorly designed trials also leads to the development of new, expensive drugs when older, cheap drugs work fine. Too many trials use the “last observation carried forward” method of recording data. So there’s the following scenario:

- people stop taking the drug as they found a lack of benefit or worse, intolerable side-effects

- in carrying forward their last observation of, say, level of pain – the benefit of the drug is massively overstated in the result.

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It’s estimated that 50% of all trials are never published..! This can be described as research fraud, or at least misconduct. It is immoral and unethical. Yet no one seems to talk about it, none of the Royal Colleges have officially spoken out. Surely these kinds of groups should be spearheading this campaign?

What about the regulators? Well, they don’t get all the information either. They also have to make different kinds of decisions from doctors and patients. They still need all the data.

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We need substandard treatment options. Some people cannot tolerate the gold standard, so they need alternatives. Regulators sometimes see black and white works/doesn’t work situations, and that’s not generally the case in medicine.

Now, the EMA rather than the MHRA approves UK medicines. Cochrane asked EMA for information on two weight loss drugs (Orlistat and one other) but they refused to provide it for 3 and a half years. They argued that it was “confidential information”, such as in the trial design (it wasn’t), that there was an administration burden involved (there wasn’t); patients were exploited for commercial gain. The EMA is now releasing more, but not enough.

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£500m was spent on Tamiflu. £5 out of every £20 in the NHS’ drug budget. Roche are still holding some of the information on around half of the trials; they promised to produce it in December 2009 but we are still waiting for it.

GSK are similarly despicable and have had to cough up a $3bn fine (not a huge percentage of their profits, of course).

Apparently the abpi behave in a surprisingly similar way to homeopaths when they are criticised.

“Conflicts of interest are situations, not behaviours – judge people by their actions” – Ben

Is there a concerted campaign to change this? Not really, said Ben at the time – now there is! Patient groups need to write to Pharma companies. There’s a lack of leadership and poor reporting on the issue; MPs are ill-advised.

No one makes the challenge so people continue to deny the problem, because they can?

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Questions

What can we do?

[Apart from signing the petition!] Doctors need to write to the Royal College(s)/BMA to complain about publication biases etc. – send any replies received over to Ben [and the campaign]. Patient groups should contact the relevant drug companies. Anyone can!

What about non-UK companies? … if a company is attacked on home ground, won’t they move?

Asked senior politicians about this. The abpi said prescriptions talks with the NHS drove down drug prices. The prospect of job losses is fine. What’s not fine is letting them withhold data “or jobs will go” – patients are harmed by this!

So what levers are there? NICE; they could not approve drugs until all data has been shared.

Can we at least get Europe to do this? Coalition pressure, Australia, New Zealand, Japan… The government can lobby colleagues coherently. No marketing without total results. Unknown results – how many deaths? New policies? Better decisions?

What’s a good response to alt-med fans and peddlers accusing of ‘conspiracy’?

It isn’t, it’s the inevitable behaviour of corporations running under incompetent regulatory frameworks. It’s rational. Imperfections – but people are stirring to improve EBM.

Quacks are thousands of times worse.

But if they can be allies, if they could help fix EBM problems..?

Quacks do provide interesting case studies and useful demonstrations of what EBM is because what they do is not.

Pharma companies do not respond to placebo, so we need to do something real. Antivax and quacks have poisoned the well here.

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NB/ RandomiseMe should be up around April/May 2013. Random tests (not necessarily medical) to take part in.

PatientsLikeMe is useful for logging symptoms, side-effects etc.

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Why isn’t the financial sector more concerned?

Generally it’s not a company value issue because consequences are miniscule (Tamiflu is still selling).

GSK fine didn’t affect their stocks, about 10% of their revenue?

Jan 2012 report showed 1/5 trials are put on clinicaltrials.gov, but no fines given.

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Thus ends my patchy notes – finally, sign and share the petition!

Card knocks

Good morning, everyone.

Yesterday, someone posted a photo on Twitter, which showed a card they’d found in a shop. A birthday card for a 13 year-old girl, supposedly. 

I sent the following complaint to Hallmark via their website, who appear to be affiliated with the company shown in the image, Arnold Barton (Emphasis and paragraphs added, since their contact box does not allow any formatting):

Dear Hallmark,

I am writing to complain about a card produced by Arnold Barton, which I understand is registered with Hallmark. The card is depicted here: http://t.co/JBxVOSsc and the text reads “You’re 13 today! If you had a rich boyfriend he’d give you diamonds and rubies. Well, maybe next year you will – when you’ve bigger boobies!”.

I hope I do not have to explain why this message is so offensive and damaging, but I will try to be brief. This card suggests that a young woman’s worth is in her body, that men should buy her things and that the size of her breasts will determine her success. This is such a horrible message to send to our young girls, and I am shocked that a company would produce this card, that shops would sell it and that people would buy it, if indeed they are. I would very much appreciate a response to this complaint.

Thank you.

We came to the conclusion that Hallmark was the way to go with respect to Arnold Barton products due to the information here, which showed the latter to be a dormant/non-trading company but registered at the Hallmark office.

Today comes this update from the Hallmark website (emphasis mine):

We know that some people have expressed concerns about a card, branded Arnold Barton, Co., sold recently in the United Kingdom. The message below is from Hallmark UK:

“This card was printed over 15 years ago by Arnold Barton before Hallmark UK acquired that brand. This card has not been reproduced since and we are surprised that a copy was still available for purchase in a retail store. We agree the card is not appropriate; we apologize on behalf of Arnold Barton and will do our best to track down any copies remaining in circulation.”

UPDATE 2 p.m. 12/7/2012

Following is an updated message from David Dean, managing director of Hambledon Studios, a subsidiary of Hallmark UK:

“This card was produced by Creative Publishing prior to Hallmark Cards acquiring the company in 1998. We are as surprised and horrified as anyone else to have discovered that there are still copies in circulation. The card has not been produced for over 15 years and would never pass our own strict guidelines of taste and appropriateness. We would like to assure all our customers that we will do everything in our power to track down remaining copies.”

Thank you, Mr Dean. So it seems Arnold Barton died a death (thankfully, coming out with that kind of product) and similar for Creative Publishing. What I do wonder, is how and why this card can still be found, 15 years after it was printed?? Surely shops have stock clear-outs periodically. Odd.

Let’s hope their new mission to “track down” the last of these cards is successful, and that no more little focus groups decide this is a good idea. Did these people not have daughters or sisters? Again, going back to an old post, it seems to be evidence of the huge disconnect a lot of people seem to employ when it comes to people they know and random women (or girls, even!) on the street.

Still, I happened to have been 13 in 1998. I would’ve found it offensive then, too, as would most of my peers, I’m sure. 15 years isn’t so long ago.

I’d be interested to know how many complaints they got – can’t beat a good bit of Twitter outrage sometime

Edit: HuffPo wrote about it too, but beware standard comments along the lines of “Oh stop being offended by everything”, “the ones about men are more degrading” and so on. Sigh.