Skinny bitch

In our culture, we’re all taught that the shape of our body really matters.

Two separate issues

It starts early. I remember complaining to my mum that my thighs were fat, when I was about 8 years old. How absurd (because they weren’t, and what a ridiculous thing for a child to be worrying about), when I look back, but I remember how I felt at the time and it was serious. It’s a pretty constant battle for most women trying not to scrutinise our bodies day after day – this obsession can form the basis of debilitating illnesses.

Childhood obesity is also of course a real problem – that parents cannot afford or do not have sufficient education to feed their children healthy food that doesn’t put their lives at risk is a tragedy, and a huge challenge for public health measures to tackle. It’s important for us to maintain a healthy weight for a variety of reasons; it lessens the risk of heart disease and cancer for starters. We all want our friends and families to be happy and well, so if people are trying to lose weight or bulk up to address this, great.

But there’s a difference between weight-related concerns that focus on health and another category of scrutiny; one that is far more shallow, cultural and full of underlying hatred and insecurity. People (and I cannot exclude myself) make negative comments on other people’s bodies all the time. We’re taught that it’s OK, that it’s our business, it’s just humour, and so on.

The ugly side

The women’s magazines (and the men’s for that matter), just about everything on television, the tabloids and many of the people we interact with daily – they all think it’s acceptable, appropriate, or even some sort of duty, to monitor fluctuations in how fat people are, or are not. I won’t get into the issues around having babies and what the media does with that, it’s a bit of a separate topic.

My problem I suppose is the kind of language that surrounds all of this. “You’re so skinny, you bitch“ - it comes from a variety of people, people who are close and loving, people who are acquaintances and really have no right to comment. It’s seems to be based on the idea that it’s so important for women to fit their bodies into acceptable forms, and what this does to us – whether we realise it or not – concerns me. Obviously men face these things, too – “fat-shaming” is not exclusively directed towards women.

A particularly high-profile and shocking case of it has occurred this week and came from Abercrombie and Fitch. As most of us are aware, the USA’s obesity rates are shockingly high, and most shops will stock American sizes 0-14 and sometimes above. A&F, however, are very unlikely to do so, as Robin Lewis revealed of their CEO:

“He doesn’t want larger people shopping in his store, he wants thin and beautiful people… He doesn’t want his core customers to see people who aren’t as hot as them wearing his clothing. People who wear his clothing should feel like they’re one of the ‘cool kids.’”

So apparently you have to be thin to be hot and cool - oxymoronic vocabulary quirks aside, I’m sure most people would disagree with that. Personal tastes are one thing (I am attracted to people of a similar slim build to myself, for example – and I have friends with exclusive preferences for bigger builds) but they vary hugely between individuals, and one cannot criticise anyone else for that. But this retail policy from a company CEO does sound prejudiced and extremely insulting.

On the other hand, they are a company and are permitted to choose their audience and which kinds of customers they want their products marketed towards. If you specifically choose some subjective categories like “good-looking” and include “thin” within the entry criteria to that category… well, it’s offensive. Is it wrong? I’d say it’s ill-advised, much like I dislike sexist marketing for MAN CRISPS. Is it worse, or not, than that?

Fighting the tide

As I grew up I heard my dad call Lisa Riley on You’ve Been Framed a “fat cow” and say she should get off the TV as a result. Or he’d say “your fat friend…” instead of using their name (partly because he didn’t know it, but that always upset me). It’s easy for those of us who can maintain a low body weight relatively easily to point at and accuse people who cannot, but it would be nice if there were some more consideration around.

Going back to the health issue, a lot of conditions can cause people to become overweight, or to have extreme weight fluctuations. Medications can affect this, too; whether it’s a kind of birth control or steroids… how would you feel if that person whose weight you just criticised were undergoing cancer treatment? Sure, we make our little in-jokes quietly to ourselves and each other, but like street harrassment this too often spills over into unwanted and upsetting interactions.

Women with large breasts face an added level of this, with barrages of comments ranging from what people mistakenly think are compliments  to accusations of being too slutty by showing a lot of cleavage (often something that’s difficult for such women to avoid without always wearing some variation of a sack) and an assumption that they should be grateful for what they are “endowed” with.

This is a sad state of affairs for many reasons. For starters, no woman should be judged on the size of her bust; with “flat” chests in my family it’s something I’ve seen the flip-side of, too, and have even received such comments myself (somewhat in error!!) based on strange men deciding it’s something worth using as an insult when I didn’t want to talk to them on a dating site.

As someone pointed out on Twitter this morning, one of many problems with Page 3 is that it perpetuates an idea about breasts, aspirations and attractiveness, which can be really damaging. Mastectomy is tough enough to deal with, without a daily reminder that women are only (desirable) women when they have (big) boobs. While the debate on page 3 is extensive and multi-faceted, if you do want to sign the petition against it, it’s here.

In addition to that, larger ladies have a lot to contend with: health issues such as back pain and possibly breast cancer risk; the inability to find clothes that fit, not to mention them actually being affordable.

All angles

But it’s not just fat-shaming. A friend who deals with multiple health conditions posted the picture on the right this morning and sparked a little debate around it (which prompted me to write this).

I’m also reminded of the Beautiful South‘s song, Perfect 10 (that I alternate between enjoying and not):

The anorexic chicks, the model 6
They don’t hold no weight with me
Well 8 or 9, well that’s just fine
But I like to hold something I can see

I have trouble saying that this is any more acceptable than unsolicited comments towards overweight people instructing them to eat less or run more. It’s a song, sure, and it’s about a couple of big people enjoying each other, but for some reason that strays into insulting others.

Women are often swept along by the misogynistic undercurrent and say incredibly horrible things about other women, as well as judging themselves harshly. I put on weight in my late teens and I lost it in my early 20s, partly due to illness. The amount of comments I have received on this over time is only now beginning to overwhelm me, and when this picture came up suddenly a number of instances came to mind.

I wish my friends, or their friends whom I barely know, didn’t feel the need to call me a bitch for getting back to my normal weight – I’m a small person. I feel more comfortable in myself having lost the excess. But it wasn’t exactly fun getting to that point – as is the case for many people, I’m sure. I didn’t do it for anyone else, or to spite anyone, either. I don’t want to feel like I should apologise just because I fit into something, or it’s too big for me. Being ‘skinny’ shouldn’t be the ultimate goal of all women*, and we shouldn’t be at each other’s throats about it.

When I was eating dangerously little and people kept telling me “Hey, you look great!”, that didn’t exactly spur me on to healthier behaviour. Weight loss and gain is a complicated seesaw and you’re unlikely to know the facts behind it for people you don’t know very well.  It’s also never about one person, or one comment; It’s the frequency and ubiquitous nature of it. Just like one guy inappropriately touching you in a whole lifetime would make no difference, it’s the constant barrage of little things that turn it into a problem.

No stone unturned

Too fat, too thin, ‘real woman’ this, curves or bones that – it seems no one is immune.

*I haven’t touched on fad diets, why I hate gyms or pretty much anything regarding the health & fitness industry. But this article just appeared in my timeline courtesy of a couple of excellent friends, so you can read that for some great commentary on how women in politics are described, some links to what I’ve written above and the writer’s experience of finding a job in fitness. One of the take-home messages being:

“I wonder how my life would have been different if people had encouraged girls (me) to be strong instead of skinny”

And wondering what we can do for our young women today, to spare them some of this crap we’ve grown up with and are now trying to get over!!

“I became a more capable, energetic, independent, and mentally focused person once my focus shifted from what my body  looks like to what my body can do“

LiftGate: QEDcon2013

Hello everyone.

So you know before we get going, some of this is meant to be tongue-in-cheeck, mainly because I wanted to make use of a pun. It’s also got little serious bits in it and partly it’s because I just got home from QED and I need a bit more of it in my life before I let it go for another year…

Also I haven’t been blogging much lately, I don’t know why. Haven’t been inspired, also busy with new job(s) and imminent moving house! I didn’t write a post about QEDcon 2012 because I was mega-stressed with thesis-writing at the time (nearly couldn’t attend because of it) but this year I shall follow from the 2011 posts:

I love QED

As does everyone I speak to who’s been. This was its third year and it certainly lived up to expectations based on the last two. I’d looked forward to it since I left in 2012; extremely tired on the Sunday evening, I slept through the whole train journey back to Euston. Cleverly, this year I booked the room for Sunday night too – to anyone who can afford a bit of Monday off and the extra expense, I highly recommend this!

Some of the organisers are good friends of mine (do listen to Skeptics with a K if you haven’t before; one of my favourite podcasts! Also check out the infrequent but giggle-inducing InKredulous) but even if they weren’t I’d still have to give them many hugs/hi-5s/no-contact congratulations (delete as preferred) because, together with all the volunteers, they do a truly amazing job. I think I’ll be joining their ranks next year!

Highlights

Rocking up on Friday evening for the mixer in the bar, coming back to a now familiar place and seeing lots of familiar faces (as well as plenty of new ones!) is brilliant. Some drinks, some chat, some hugs and a lot of excitement.

On Sunday we made a bit of a snap decision to listen to Natalie Haynes talk about similarities between Greek tragedies and soap operas, and the relevance of other classical authors such as Pliny, Juvenal and Virgil in modern life. Her explanation of why people saying quis custodiet ipsos custodes is quite hilarious was just perfect. Despite clearly being high on caffeine and sleep-deprived (which she acknowledged with comedic excellence), I hugely enjoyed her talk. With a Latin A level from school, I have missed classical literature and ancient history ever since and it was a lovely reminder.

Just before this, Carrie Poppy, all the way from the US of A, gave her talk on the value of anecdotes. I very much appreciated this. As an intactivist, a lot of the research I do in this area involves listening to people’s stories of how circumcision has had a negative impact on their lives. This is not valueless, quite the opposite. When an argument in defence of something often contains “but I’ve never heard anyone complain about it/I’m fine!”, exposing the truth that in fact a great deal of people have been harmed is very important indeed. I think a lot of skeptics could learn from this, and rein in the (often appropriate, admittedly) data or gtfo kind of attitude.

An excellent set from Chris Coltrane included a perfect bit on being bisexual and biphobia, which definitely resonated with a selection of us in the room! We shook his hand for that.

There were so many other things. I collected a promised hug from Colin, due to my having Tweeted a semi-regular plea for cheery thoughts when I was feeling sad one time… and having walked past him on the way to the station one day but not managing to stop and say hi in time!

ElevatorGate

For the unaware, here’s a quick bit of background on an incident you’ll need to know something about for the rest of this section to make sense.

There are other skeptical conferences. At one such event, a female speaker gave a talk that included some advice on being respectful to women, and after some time at the bar got into a lift (or an elevator, if you’re from the other side of the pond) to go to bed.

In said lift, a male delegate at the conference decided to ask her to his room for coffee. Possibly innocently, possibly with hopes of some kind of friendlier-than-that situation, who knows. After the event, said female skeptic (who is well-known to most skeptics) made a video for her website that was about an hour long, which included a short statement on this incident.

She asked him, and guys like him, not to do that kind of thing. If it’s late and you’re in a confined space alone with a woman, don’t proposition her (or say something that’s likely to be interpreted as such). It’s just a bad idea.

Fair point. Unfortunately this exploded into ridiculous discourse and all kinds of people jumped in with their views; why is she implying he might be a rapist and why doesn’t she shut up and die – together with deeper and deeper analyses of male privilege, misogyny and all sorts. Including a very misjudged and sexist comment from Richard Dawkins. The fall-out is still happening, somewhat absurdly.

Given this, just about every time a few of us got in the lift, someone would make a joke about “ElevatorGate”, as it’s now known. It was very funny.

We giggled. It was also nice when loads of us packed into the lift at one point and, to save space, partner and I took the opportunity to have a cuddle. After laughing about the close quarters, one girl did ask: “You do know each other, right?” – I think it’s great that people are coming out and asking that, rather than making assumptions or keeping quiet when they witness what might be an uncomfortable situation. Progress.

LiftGate

What wasn’t so funny was when I was chatting, wine in hand, with some other drunk folks after the Saturday night entertainment, trying to work out what strange game they were playing (it involved placing a wine bottle upright on the floor, using teamwork to avoid touching the floor with anything other than that bottle past a certain point).

When my flatmate said something like “Maz, be on our team, you’re light!” and picked me up briefly, a little way off the floor, to demonstrate this fact, we were amused.

However, when a random guy I had never met, who did not introduce himself or ask before going ahead with his copycat behaviour, proceeded to wrap his arms around the tops of my thighs and pick me quite high up off the ground with a grin on his face, which was pressed against my front – we did not laugh.

In fact, my partner told me afterwards that he’d felt like punching him at that point (not usually a violent person). In different circumstances, I might have let him.

Now, I’m not insinuating that this person was anything other than an inebriated reveler who saw something mildly amusing (he was not to know the previous lifter was well-known to me) and decided to join in the fun – I hope that’s the long and short of it.

However, at the risk of kicking off #liftgate, here is my advice – don’t do that. Don’t approach strangers and touch them somewhat inappropriately, even in a partying environment. My displeasure at this may have been enhanced by the fact I was wearing a loosely hanging dress I hadn’t worn before – and I don’t wear dresses often anyway.

But there it is. In the grand scheme, a small thing – I am not traumatised or accusing this person of deliberately treating me a bit like a bit of sports equipment free to be tried out in the shop, I expect he just wasn’t thinking.

That’s the point though; a lot of us are socially awkward, and it’s worth taking a second to think before you act (or speak). All of that is overridden by meeting loads of brilliant people this weekend, catching up with friends, learning some cool stuff and having a generally awesome holiday. Plus I got to use my pun-thing.

Edit: Following some commenting and Twittering, all is well – let this be an example of How Not To Be A Dick. We all make mistakes. Pointing things out, accepting our errors, apologising for them and being forgiven – it’s easy and it doesn’t have to turn into a giant flame war. Live and learn.

Links

I will try to update this over the coming week or two with links I find to other posts, picture albums and so on relating to this year’s event. Feel free to tweet them at me, that would be helpful!

The amazing intro video can be watched over and over again here!! The 2011 and 2012 videos are also available. Everyone gets Milton Mermikides‘ theme tune stuck in their head for a while!

Here’s Stevyn (with whom we had a lovely lunch discussing Qi curiosities and other things on Saturday) with his favourite bits. He mentions our protesters, and I’ll try to find more mention of them. You can also read more about his Skeptical Bobby talk!

You can even listen to Saturday’s Pod Delusion Live recording!

Robin Ince mused on his panel conflict, which I unfortunately missed, but I liked reading this anyway. Here’s a summary of that session by Violetta Crisis. Daphna Shezaf has also written about the conference, and the aforementioned panel.

Some of Robin’s rage was expertly captured by @gwendes – have a look here.

Pixie359 thinks about what more can be done in skepticism.

Alex Gabriel defends Atheism+ for The Heresy Club (I missed this session too).

Hayley has put her thoughts into words.

Eventifier keeps track of twitter traffic generated by events, pretty cool stuff. Over nine thousand tweets… >480 photos, 26 videos – from more than 1200 accounts, apparently!

See Liveskeptic for some storify (collections of tweets on a particular subject/talk).

Here’s a Flickr album from Richard Cooper and here’s an open Flickr group by Kevin Friery that anyone can upload their images to. Friday (including afternoon tweet-up), Saturday and Sunday photos by Rob McDermott, plus a lovely pan of the RDF hall. The Hampshire Skeptics page also has some great images.

My photos are here but I’ll try to put them on Picasa at some point.

Shisha scheisse

Inspired by a recent tweet from Rhys, I have decided to reproduce a little bit of work I did on explaining “shisha” to someone otherwise unaware.

I still quite frequently find that people are ignorant of what it is (and isn’t) and what the potential harms are – indeed many will claim it is safer than “traditional” cigarettes. So I’ve tried to summarise all of that here. Please feel free to add your favourite sources on this topic in the comments.

What is shisha?

Shisha or sheesha is a method of smoking flavouried tobacco through an apparatus called a hookah. It is also known as “waterpipe tobacco” because the smoke passes through water before it’s inhaled.

The tobacco is available in many (often fruit) flavours and the popularity of shisha, especially among younger people (18-24 years) has increased in recent years. This appeal has been attributed to a more pleasant/less irritating smoking experience, cheaper costs, it being a sociable activity and perhaps carrying less social stigma compared to cigarette smoking nowadays.

How is shisha harmful?

It’s commonly thought that smoking tobacco using shisha is far less harmful than cigarettes. This is false; it actually seems that this method can be just as dangerous as cigarettes, causing many of the same diseases (including cancer, respiratory diseases and heart disease) and risks to pregnant women and children.

The water-filtering of the smoke does not remove the harmful substances from the tobacco smoke. Users are still exposed to carbon monoxide, tar (light cigarettes are not safe either), chemicals that cause cancer (carcinogens), and the addictive substance nicotine.

It has also been noted that exposure to carcinogens may actually be higher for shisha users due to the greater amount of time spent smoking; typically up to an hour, as opposed to the average 5-10 minutes for a cigarette. The WHO has compared one shisha session to smoking 100 or more cigarettes. It’s also common for shisha smokers to also be cigarette smokers, which complicates research.

Shisha pipes can also spread infectious diseases due to sharing the mouthpiece with others while smoking; including gum disease, TB, hepatitis and herpes. Passive smoking can also harm those nearby who are not actively smoking, perhaps more than cigarette smoke because of the additional fuel used to burn the tobacco, which also realeases harmful chemicals. This is further exacerbated by venues offering indoor smoking facilities.

It is accepted that more research is needed to fully understand the risks of shisha smoking, but, based on current evidence, it is safe to say that it is harmful. An early day motion was put forward in 2011 suggesting more should be done to educate the British public about the potential dangers of shisha, and to ensure smoke-free legislation is followed around the country.

Is it illegal to smoke shisha outdoors?

For the law fans: smoke-free legislation states that any premises open to the public or used as a place of work must be smoke-free in all enclosed spaces (those that have a ceiling or roof; and, except for doors, windows and passageways, are wholly enclosed either permanently or temporarily).

This does apply only to enclosed spaces, according to the Health Act (2006): “In any case, premises are smoke-free only in those areas which are enclosed or substantially enclosed.” – c. 28, Part 1, Chapter 1, S. 2: smoke-free premises, etc. point 4.

Local authorities may impose additional smoke-free premises that are not enclosed if there is a risk significant exposure to smoke, and owners of establishments may choose to make their outdoor spaces smoke-free. These areas must be clearly marked with no-smoking signage.

Smoking in smoke-free premises is an offence, but being unaware that an area is smoke-free is a legitimate defence; it is the responsibility of the management to make the smoke-free status clear, and to challenge offenders.

The act specifies ‘tobacco’ and ‘smoking’ but does not currently differentiate between cigarettes and shisha. Cafés specifically catering to shisha smoking are not exempt from smoke-free legislation and must comply by ensuring smoking spaces are not enclosed.

Final words

Anyone who knows me knows what my view on smoking is. It’s pretty similar for this. I think there are much better ways to have fun with friends than breathing in smoke, and I’m sure in future people will look back on these pasttimes with disbelief.

For people who have seen loved ones suffer because of this expensive, unhealthy habit, it’s really a no-brainer. I won’t patronise you further, and I hope this proves useful to some.

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.

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.

—

£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!