Burzynski II

Sorry for the unimaginative title, but I get the feeling number 2 won’t be the last and at least this makes it easily searchable.

In this post, I want to talk about people’s online behaviour regarding this issue, think about it a bit and hopefully get others to do the same. It’s not a sciencey one (lots of links at the end for that, though), but I hope people will read it nonetheless.

I would say that the general acceptance of alternative medicine by the general public (and indeed the NHS, having walked past the ‘Hospital for Integrated Medicine’, formerly the Royal London Homeopathic Hospital, again the other day) creates a dangerous accepting background for these kinds of situations and media coverage of them (the BBC as well), and is a huge contributing factor in people’s choices. So that’s where raising awareness of the dangers and lack of evidence behind alt med as a whole comes in.

With the recent publication of an ‘apology’ from the Observer – actually it’s not an apology, it’s a hamfisted justification for their worryingly positive portrayal of the Burzynski clinic in the previous article that drew all the attention in the first place – it is unfortunately time to step back and really think about what’s going on here. Andy wrote an excellent post in reply the same day over at Quackometer and Josephine Jones is collating responses here.

Today Keir Liddle has also written a good post at the 21st floor starting to address the question of how the anti-Burzynski crowd (let’s call it that, to avoid ambiguity and meaningless labels) is coming across. In addition, upon hearing about people tweeting directly at patients enrolled at the clinic, Hayley Stevens posted her thoughts.

The issue

I am very concerned about this. A very small number of people are thinking it sensible/acceptable/useful to send tweets to people, one account in particular which I won’t link to here, who are paying for Burzynski to treat them. Let’s call them patients.

Let us set the scene.

These people are very ill. They have cancer; most of us have experienced family members and/or friends dealing with various types of cancer (it’s important to remember it’s not just one thing, just as virus isn’t – measles is a specific disease, as is pancreatic cancer, but cancer alone is an umbrella term) and do try to bear in mind how big an emotional toll that takes.

Generally if they have made the decision to spend their life savings and more on a last-ditch attempt to find a cure, you can be sure they have been giving a certain amount of time to live. They know they are dying and, while we all are, when your mortality is thrown in your face by something like a diagnosis of terminal cancer, your perspective is likely to change.

Also, having made said decision to spend thousands on a certain strategy attempting to prolong your life, some strangers shouting at you is unlikely (to say the very least) to change your mind.

The effects

Next, let’s think about what Twitter is. For those of us that use it, this really shouldn’t be difficult to get our heads around, however I’m finding that it actually can be.

Twitter is a bit like your text inbox, or ceefax if you really aren’t an internet person (though in that case you’re unlikely to end up here… anyway). It’s a stream of events coming to you from out in the ether, you read it when you feel like it, unless you have alerts set up as well (like a text notification noise and/or vibration), in which case you’re more aware of each time you get a message through.

Imagine you are one of these patients and your twitter feed starts lighting up with messages from concerned skeptics. They’re telling you that the man you’re giving all your money to is a fraud, a liar and a quack. They’re telling you you’ve been conned, duped, you’re wasting your money and your time.

Now, one reasonably polite message from you, you think, surely won’t come across badly?

I’m just concerned. Surely it’s better they know the truth?

Normally, yes, I prefer the truth over a dangerous lie any day. But again, these are very vulnerable people who have already made a commitment. What possible benefit do you think your attempt to enlighten them will bring?

Imagine your twitter feed/inbox filling up with messages from people you don’t even know, have never met and will never meet, telling you these things – insinuating that you’ve made a horrible decision so close to the end of your life (for yourself or family members). One message from you, one message from someone else… how many hundreds of people are following? If they all decide to raise their concerns, do you think this is positive?

Think about it

Here’s my problem.

I do believe the vast majority of skeptical types and everyone who is following and contributing to this story are good people, people who are concerned for their fellow human beings, who don’t like to see an unscrupulous, ethically blind man take advantage of the sick and dying. I like to think most people I engage with in any case are that kind of person.

But if you think it’s ok to force your voice into the world of the people mentioned above, in this context, then I am concerned. I am concerned that you are being selfish.

Why? Because, as I said, telling people whose minds are made up about all this evidence for Burzynski being a conman is going to make no difference to them, except make them feel horrible, and they don’t need any more of that.

Aren’t you just going directly to them because you want to absolve yourself? You have information, important information, that you feel everyone should know about. Informed decisions are the best kind. People are ill, you don’t want them to do the wrong thing – that’s understandable. But it’s too late. As much as you want them to listen to you and change their minds, that won’t happen, so don’t approach them in the first place, please.

Harsh truth

You want people to accept an awful reality, but I’m afraid you must do the same. We cannot help everyone. The patients are not the target here – nor are the generous fundraisers who have already made commitments to give their time and money (even if we feel it is misdirected, again, you cannot ask people to go back on their well-meaning promises) – because no amount of data and facts will convince them that what they’ve committed to isn’t right. They have access to all of the things coming to light, which they can read if they wish. Directing your otherwise well-intentioned concerns at them will not help.

We have to accept that however much we would like everyone to suddenly see the light and embrace the truths that have been unearthed, that’s not going to happen.

This information must be shared so that fewer people in future, when faced with such a terrible situation, will go down this path. What we don’t need is people coming across as insensitive and rude with no concern for people’s situations – because then things like that nasty Observer editorial will happen, and as a minor point – the reputation of the ‘skeptical community’, whatever that is, is tarnished. That can really have a negative impact on whatever good we can glean from these kinds of occurrences now and in the future.

It’s similar to politics; it’s the fence-sitters and undecideds, not the safe seats, on which attention needs to be focussed, if you actually want to make a difference.

Philosophies and ethics

Today a friend shared this excellent article about how doctors tend to deal with death. They don’t fight for every last second they can muster, they realise what can and can’t be done, what’s inevitable and what’s important. Quality of life over quantity, in the case of many terminal illnesses.

A friend of mine who is a doctor recently told me of a patient who had had very serious strokes and was not going to recover. She had got to know her and the family well, and they were arranging for her to go home to spend her last few days with her loved ones. However, a senior doctor who was rarely on the ward decided to come in and instead override that decision, recommending her instead for rehabilitation – keeping her in the hospital, trying to get her to restart, essentially. She died in hospital, without her family, and my friend was, understandably, incredibly angry. There are serious questions about prolonging life, which are beyond the scope of this post, however.

A major finding that Sense About Science has is that people who spend their last months chasing hopes around the globe, spending their money and time exhausting themselves – when it’s all over and done with, loved ones will wish they had just spent time together, enjoying what life they had left.

That is the real crime; that people like Burzynski and all the other quacks we will continue to attempt to expose are exploiting people’s desire for life to continue, and in doing so, they rob them of it.

I haven’t written about it before, but when a good friend of mine died of an incurable form of brain cancer, in addition to the loss, pain and anger, I was also relieved. Relieved that her family was so strong and dealt with it so well – she spent her last time in a hospice, with wonderful care (the amount of respect I have for end-of-life carers cannot be expressed in words), with family around. We, her old friends, were also allowed to visit her, for which I am very grateful.

Unfortunately, children cannot generally make sense of such a situation and cannot make their own decisions; their parents will make them instead. The act of dragging a child across oceans for invasive medical procedures that cause them pain and impede their ability to enjoy the life they have is seriously questionable in ethical terms. Again a bigger issue, but something else that should be considered if you are thinking about engaging families of patients directly.

Do you want to accuse people of causing their children pain? Again, the hope is to prevent people from taking such decisions in future, but addressing those who cannot be swayed is simply pointless and brings no benefits.

Don’t be a Dick

We’ve said it before and we’ll say it again.

I think the number of people who would send such messages because they are just dickish, want to spread their correct opinion around and care not for the feelings of others is very small.

The rest of the people, I expect, are well-meaning but are directing their concerns the wrong way. Your anxiety for their situation is not the point, your desperation to tell everyone you find who is doing something you consider stupid or wrong – in this case, you must keep it to yourself.

There are factors that make this particular case distinct from, say, homeopaths trying to treat illnesses for which effective medical treatments are available. It’s different from people who want to take their baby to the chiropractor. If you can’t see why, read slower, think more – leave a comment? I’m finding that some people get it, some don’t. If you don’t, at least refrain from saying things before you’ve asked a few people.

This is important – for this case and how it could turn out, for the people involved (also, who must remain anonymous wherever possible, for the above reasons), for the skeptics.

Links

Here are a few links, stuff that’s been happening in the #Burzynski tag, for those who aren’t following.

Science-Based Medicine addresses the fact that Burzynski is often using cocktails of chemotherapeutic drugs on his patients. Drug combinations that are not approved for the types of cancer in question. Drugs that some patients are unaware they’re signing up for. Drugs people are specifically hoping to avoid in many cases. Sadly this is common with a lot of alt med; especially TCM. Actual drugs are often included, at unknown levels and from unverifiable sources, making the treatment even more dangerous than if it were just harmless.

An important analysis of what’s really going on with Burzynski’s claims of approved treatments, publications and specific types of cancer patients they recruit, from the Ministry of Truth.

The clinic issued a Press Release suggesting their ‘representative’ Mr Stephens had been fired*, but we bloggers would still be pursued for libel. *Though he is still listed on the Patient Group website as the “Marketing & Sponsorship” contact  (noted by @writerjames ).

Some hard reading showed the list of publications in said press release to be, bluntly, crap.

Martin Robbins has also been in touch with the clinic about Stephens and received a response.

Even the BMJ have picked up on the story now.

Skeptical Humanities is researching patient outcomes. Sadly they are overwhelmingly worst-case-scenario, with only a handful of survivors.

Saul Green had researched in the past Burzynski’s claim of having a PhD, which seems to be false.

Josephine Jones is still updating the Burzynski-topic post Master List

On charging to enrol people in his trials. Interestingly, if one wishes to donate donate to clinic, one writes cheques to him personally!l

The clinic on Facebook – where the wall was shut down and many people came out with ‘this isn’t a place for negative comments’ type comments. Worrying.

The cancer act is rarely enforced – but it is illegal to claim you can cure cancer when in fact you cannot. @jon_S captures such a claim.

Some of the costs of a course of treatment at the clinic are described here by some people who went there.

Invisible Lives

It’s a skeptics in the pub write-up!

In case you missed it, I luckily made it to Westminster Skeptics to see Juliet Jacques give her talk,

Thinking critically about transgender issues

and you can listen to it on the Pod Delusion but I shall write up my notes for those who prefer to read!

Firstly Belinda Brooks-Gordon introduced the talk by saying that trans rights have not really moved forward along with women’s rights. To try to highlight this and educate people, Juliet has a Guardian blog where she posts regularly about trans issues.

Now we can hear what Juliet has to say – it’s a lot of stuff, hugely informative, and it was a great talk!

I’ve put in a few thoughts of my own with [Comment: ...] along the way.

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“Transgender” is almost deliberately a loose term. There is no commitment to a transsexual (TS)/transvestite (TV) distinction; the two not being the same thing, in case you’ve never thought about it before.

It turned up in late 1960s United States literature and became popular in the 1990s as an umbrella term for gender non-conformity and gender-variant identities.

Terms such as male/female (referring to bodies) were challenged by transgender communities.

A Whistle-Stop Tour of Trans History

Gay/lesbian histories and identities are far better explored (also bisexual but to a lesser extent) and it is much easier to define these terms.

In the Victorian era, modern industrial cities like London were giving people the chance to cut themselves off from their families and old friends, to reinvent themselves and be isolated from their past.

Thus, LGBT identities became possible.

However, men who dressed as women in public were arrested and sent to court. The Met, from 1829 onwards, accused the offenders of being ‘sodomites’; Victorian authorities associated cross-dressing or, officially, ‘men in female attire’, with homosexuality.

[Comment: at this point I'm reminded of one of my favourite comedians. Now, it might piss some people off that I bring it up, but having had close family dismiss him for his transvestism when I was quite a lot younger, since then I've felt uncomfortable when people poke fun.]

Men would often try to have the charges dropped using a defence of humour; “it was just a lark”. They dismissed their actions in this way to avoid prison.

In 1870 two men were often seen out and about as women. The mainstream press showed photos of them and they were well-known in London theatre. One was also associated with the aristocracy. They were charged with committing an “unnatural offence” and were subjected to examinations trying to prove they had engaged in anal sex. This (unsurprisingly?) failed and new charges were brought:

“Conspiring to incite others to commit an unnatural offence”

There was no frame of reference. Law and the media were reacting to events, creating legislation. The prosecution tried to prove cross-dressing was innate in order to suggest that sodomy had occurred.

There was the basic assumption that these people were deliberately trying to deceive men into having sex with them, by pretending to be women.

Obviously everyone’s lives revolve around heterosexual male perceptions!!

Women were also not accorded sexual agency; feminine sexuality was also suppressed.

[Comment: it was in the Victorian era that genital mutilation really took hold culturally; sex was something to be ashamed of and dampened, for both men and women. Circumcision was touted as a cure for boys' masturbation 'problems' and female circumcision became popular to suppress female sexual desires and 'hysteria']

A new defence was then brought: that they’re actors! Actors continuing their roles outside of the workplace. Male-female cross-dressing was a long tradition particularly in English theatre so there was an assumption of performance associated with it, and that London was a City of vice.

The judge did not like the police; he felt they had violated the men’s human rights with their invasive ‘questioning’. Public support increased due to this mistreatment.

In 1885 an amendment to criminal law was made: 2 years in prison for male-on-male sexual acts (which ensnared Oscar Wilde and he was sent down under this law).

Germany’s Paragraph 175 outlawed homosexual behaviour. After this, sexology developed, in order to classify and understand human sexual behaviours.

The medicalisation and pathologising of ‘conditions’ such as homosexuality and transgender/gender-queer identities then began.

Medicine and Media

In 1909-1910 Havelock Ellis published a book called The Erotic Drive to Cross-Dress.

Language is always evolving but there was little to describe transgender behaviour. Transvestite was coined as a broad term then, but is obviously more specific now; referring only to the act of wearing clothes traditionally thought of as being suitable for the opposite sex.

During World War I, Edwardian British and German sexologists were less active. There was still no separation of maleness vs. masculinity or femaleness vs. femininity.

In 1928 The Well of Loneliness was published, one of the first accounts from female perspectives.

The Institute of Sexual Science was founded in 1919 and pioneered sex reassignment surgery. A Danish painter, Lili Elbe, died after attempted ovary and uterus transplantations (Niels Hoyer wrote an account of her life, Man Into Woman). In 1933, the National Socialist Party closed the Institute down and people photographed the book burnings that took place.

These events caused the study and understanding of gender issues to be significantly held back.

Gender verification in sport also became an issue, resulting from people’s suspicions and prejudices, particularly those of Avery Brundage. Examinations to determine (mainly female) competitors’ sex were introduced with the intention of identifying people with an ‘unfair advantage’ – i.e. those born physically male but living as women.

In 1945 the first female-male sex reassignment surgery was performed on Laurence Michael Dillon who later wrote his own book, partly inspired by The Well of Loneliness.

Male-to-female transitions drew attention. A TV/TS schism formed, and also between TS and Gay/lesbian – the latter emphatically not desiring of surgery.

Then the first male-female transsexual was a friend of Dillon, in the early 50s; Roberta Cowell, an ex-pilot and racing driver. Her transition was serialised by the then equivalent of OK/Hello! magazine.

The front page of the New York Times featured Christine Jorgensen, a former US army conscript, in 1952. Her doctor, the sexologist Harry Benjamin, emigrated to the States during WWI. He worked on medicine for TG people, and with those who believed in pathologisation of the ‘condition’. He was closely involved in the development of phychological assessment and requirements for patients to follow ‘paths‘ to get the treatments they wanted.

The medical establishment was in control; unreasonable demands of femininity were made of M-F trans people (F-M were somewhat invisible – people assumed that women did this for practical reasons, to assume more powerful and respected roles in society); antiquated ideas of femininity were forced on people.

In ’66 Benjamin’s book The Transsexual Phenomenon was published, which detailed types of TS e.g. ‘Type 4′ – those with no desire to undergo surgery. These were all ideas articulated by non-trans people.

TS people became aware of the book. People understood the boxes to tick to get what you want - answering the questions posed ‘correctly’!

In 1960, April Ashley had surgery in Morocco. She had been married to Lord Corbett. He took her to court for divorce and the ruling was that she should still be considered male, so the marriage was void and there was to be no settlement. This set a legal precedent in the UK – that TS people’s sex is defined by what is printed on their birth certificate.

In the 60s, transitions and who could afford them were strictly controlled. ‘Sects’ emerged, for example in San Francisco. Sex workers funded their surgery. Police often harassed and blackmailed them in Compton’s Cafeteria, eventually causing them to fight back and a documentary film was made covering it.  Later the New York Stonewall Inn bar, rented by the LGBT community, was scene to more famous riots, where Sylvia Rivera stood up to police oppression. This led to the modern movement of Stonewall as the gay liberation front (gay in this context being queer & non-conforming identities).

People became more vocal about trans not being equal to gay and vice versa. Many were trying to integrate with ‘respectable’ hetero society. It became a cliché in the press; “I was born into the wrong body” – people started to think it was a new idea.

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Lesbian and feminist groups became prominent in the 1970s. These were women-only spaces; M-F transitionists, did they fit in at all? Sport was also a bi-gender separated space. Trans decisions (and often requirements) to conform to patriarchal ideas of femininity annoyed some feminists.

Janice Raymond wrote ‘The Transsexual Empire: the making of the modern she-male’ and other anti-trans feminist literature, very aggressive in its content.

She managed to suggest that TS women were worse than rapists, that the appropriation of female bodies “becomes a total rape” (!). [Comment: hovering dangerously close to a no true Scotsman, I feel that 'feminists' being so obviously prejudiced against gender non-conformity would run against the very core of feminism itself, but maybe that's just my view of it.]

She claimed [comment: epic invocation of Godwin's law here] that TS technology was perfected in concentration camps, but there is no evidence for this. She interviewed 12 TS women (TS men didn’t fit; they were mainly dismissed as butch lesbians). This was prominent in the media.

Carol Riddell addressed Raymond’s comments in 1980. Sandy Stone also responded with The empire strikes back: a post-transsexual manifesto.

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The Victorian persecution of cross-dressers made trans people invisible. Clinicians were free to frame the experience in a light designed by them alone, to propagate stereotypes, create legislation and silence trans people.

The mainstream media/trans schism developed as trans people were not used in film, TV etc. – the experiences presented were not framed by trans people themselves.

Authors stepped forward to promote the anti-transphobia cause, including: Jan Morris (Conundrum: An Extraordinary Narrative of Transsexualism, 1987); Kate Bornstein (Gender Outlaw: On Men, Women And The Rest Of Us, 1994); Leslie Feinberg (Transgender Liberation: A Movement Whose Time Has Come, 1992); and Viviane Namastie (Invisible Lives: The Erasure of Transsexual and Transgendered People, 2001).

The organisation Press for Change was established in 1992 and finally the UK government passed a bill to create the Gender Recognition Act in 2004.

Today

Trans identities have some constitution now. The meanings of words for ‘Gender-queer’ individuals (TS, TV, TG etc.) are still evolving. We are experimenting with the language. The challenge is tackling transphobia and in a sense this is following on from the gay liberation movement. Homophobic violence is still often based on gender expression and identity.

Fear of unknown and unusual drives people’s prejudices. This is often reinforced in the media, a prominent example being Psycho; in which Norman Bates fits the ‘all crossdressers are crazy!’ stereotype. [Comment: I'm reminded again of Mr. Izzard's distinction between TV people in general and the "fuckin' weirdo transvestite!"]

Work is ongoing to close the gap between the mainstream media, trans people and how articles are produced. Also questioning the usefulness of bracketing TG with mental illness; at the moment it is still in the DSM of mental disorders. Perhaps we can overturn the idea that TS is a mental health issue. TS people do have a fear of ‘coming out’ so to do so may help.

In tackling transphobia there is a need for good language use and critical thinking on these issues.

Questions

Q. The ‘Real life experience’ requirement – no scientific basis to it; just tradition?? Good reasons for it potentially being harmful. Barrier and ritual humiliation. People coming to harm via the ‘Hormonal black market’ – e.g. oestrogen without prescription.

A. Especially in Britain. The Trans pathway is structured by the NHS’ fear of being sued; transition and regret. Public money and anxiety over its use! People often suggest decommissioning of gender reassignment to save money (approx 70% comments on Guardian!).

Need for some gatekeeping. If there’s no test; it’s an irreversible surgery. Russell Reed: hormones as diagnostic tool (effects are reversible) – one can stop and revert.

Bit of an endurance test. Street hassle, everyday things become an ordeal. Some programmes do away with the psychiatry element. Difficult – more flexibility? Equality? They were allowed x time… cut-off points?

Increased acceptance – more people – pressure from the right to not spend money?

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Q. Language. LGBT(Q) bit awkward? Internal disagreements – your view?

A. Ever-expanding acronyms. LGBTQQI (lesbian, gay, bi, trans, queer, questioning, intersex) – a way around?

Umbrella term. But PC & this are kind of concurrent. Press fatigue with ‘PC’. Introduction of new words isn’t really tolerated now cf. 70s/80s.

“PC” is now pejorative. Causes some friction? Sexuality =/= gender identity. The state didn’t separate these.

How do to this but keep an ‘alliance’? Tend to occupy the ‘same spaces’. Contesting rights (Belinda BG). Trans & bi rights trampled! Medicine/sci/law intersection and research is behind –> guesswork policies.

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Q. Liz D. Popular culture e.g. Coronation St. (did it badly?) M-F trans people e.g. in Little Britain – offensive?

A. C St. Hayley. History of trans people not given a direct voice/part. Spurred dialogue and was sympathetic to the issue.

Dana international won eurovision; informing people that TG different from L/G etc. “City of Lost Souls” TS singer in lead roll. Autobiography “Man Enough to be a Woman”. Warhol, punk etc.

Tara O’Hara character. Argument on need for surgery and ‘womanhood’.

Little Britain:  trans women as comedy. Trans men ignored; men who want to be female/feminine are funny whereas if women want to be men it’s practical. Merton & co. should be more careful with jokes.

You don’t always know how your creation will be perceived eg.. Al Murray pub landlord! Taking the piss out of people but then they adopt it; uncritical identification and missing the point.

 

Stereotypes often have a basis. Not being critical of them, historical context needed. The LB catchphrase “I’m a lady!“  is now shouted at people; people aren’t aware of transphobia.

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Q. Pronouns. He/she/it ?? Queer has pejorative connotations (depends on who it’s from) – are you happy with the bifurcation?

A. Personally, yes. Have there been attempts to create new terms for people who don’t fit M/F and or don’t want – outside the binary; se/hir.

If you’re not sure, ask! Give the right of ID to the person rather than imposing your definition, but if you can’t…

e.g. Sonia/David Burgess and tube incident. Press coverage was awful.

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Transmedia watch. Work with media creators; gap in education. Social innovation camp; trans techies, media, journos/broadcasters – contact us @transmediaact @transmediawatch

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Q. A utopia where law does not interfere with people and their gender? Legal M-F/F-M transitions.

A. There was; they just existed. Legislation and pathologisation led to project to re-normalise.

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Q. Change of language ?? To reflect diversity of trans group?

A. Complicated! TG is useful for many. Weird stereotypes around TV e.g. otherwise successful men putting wife’s undies on at home.

Trans cf. privacy issues. Often that history is irrelevant and incidental.

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Q.  Is the goal to erase negative or balance negative with positive?

A. Balance. People will share strong negative opinions inevitably.

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Q. 1. is use of ‘proper’ pronouns a barometer for accpetance? 2. Maybe human minds are wired to categorise things. 3. Sexuality =/= gender… do you think it might be useful to dissociate completely from LG(B)?

A. 3. Trans people have sexuality; B or G or L… L&G esp have fixed gender associations and so are inadequate to deal with trans. Hence, LGBTQ(I) more relevant.

BBG: Stonewall etc. have resources and can often help.

1. Principle: right to self-determination. Choose your own pronouns (cf. ms?) Changing beauty standards related.

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Q. Scientific studies e.g. on brains etc. If there is a ‘trans test’, is it good or potentially harmful?

A. It would change dealing with transsexuality.

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Q. Ignorance. People are unaware of the issues; do trans people need to ‘get real’ and understand that people generally have no knowledge of these things?

A. Panic about making mistakes can increase their frequency; allay people’s fears – better for all – some trans responsibility here.

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LGBTQQ… we’re all beaten up by the same people!

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A call was made for a Corrie/LB blogpost.

Also: David Walliams played ‘Vulva’ in Spaced; when wearing some make-up after filming and walking through a park – he was verbally abused and stones thrown – he wrote about it and was apparently amused by this?!

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Also listen to the Pod Delusion report by Liz in Episode 107! Transgender and the Media (41:00) ft. Nathalie McDermott

Interacting on the Interweb

The latest furore surrounding the ‘potentially damaging’ nature of things like Facebook and Twitter is in swing, with the Daily Mail (safe to click! Minus images) interpreting a scientist’s views as social networking turning your kids’ brains to mush. Note that Martin does of course disagree – as do I.

Sciencepunk has taken the time to speak to Susan Greenfield herself to try to get a clearer idea of exactly what her concerns and suggested solutions might be, under all the media distortion and so on. He’s written up the interview for New Scientist. I take up her invitation to join the debate.

Unfortunately, listening to her speak I still find myself vehemently disagreeing with most of what she says for various reasons, including the fact that she clearly has very little or no personal experience of what she talks about, is missing some key issues and appears to wilfully ignore positive outcomes in favour of potentially negative ones.

That’s not very scientific!

So, let’s get ranty.

Context is everything

First I recall a comedy sketch (apologies for forgetting whose, do say if you know!) based on the occasions when Facebook is suddenly down/unavailable, in which the bereft individual wanders the streets shoving photographs in people’s faces and shouting “DO YOU LIKE THIS??”.

I laughed, because it’s absurd, we don’t do that… but hang on! We kind of do. I quite often show people pictures I’ve taken, be it on my camera, my phone, downloaded to my computer or even (omg old!) albums with pictures on actual photo paper!

Important to remember is that we behave differently in some situations compared to others; it’s a ridiculous fear that online behaviour is going to replace offline behaviour. They’re different things that don’t translate. Just as you don’t put your feet up on the table in a meeting vs. in the lounge, or take your shirt off and sit on your friend’s shoulders at a posh indoor concert at a swanky theatre.

We like to share our experiences with our friends, and sometimes if we’re a bit more serious about photography, get people’s input on our creative endeavours. That’s not a fault, it’s perfectly normal behaviour and taking feedback/constructive criticism/praise onboard is a good way to improve ourselves if that’s the goal.

Small-talk, seeking approval and helpful suggestions, presenting an image of ourselves – this is what we do in life, not just online. Does she also have a problem with in-person small-talk? Should we only ever be having super-meaningful conversations?

Sorry, but after our lab meeting we like to go and have lunch, talk about the weather, take the piss out of each other and show holiday photos, for example. We don’t spend all day talking about work or the latest world crisis; that would be draining and rather unhealthy, I’m sure most would agree.

In the same way, not all of my tweets or facebook status updates are serious. I share articles, I have a moan about things, we’ll have some discussions. But other times I’ll be swearing about a minor injury, taking a photo of the mouthwatering foods/lovely scenery I see before me or friends/pets making tits of themselves. Because life is a mixture of these things and if it weren’t, it’d be bloody boring.

Greenfield seems to want to make a connection between things like increasing autism rate and internet use. I’m pretty sure it’s well-accepted that the ‘increase’ in rates of conditions like this is due to better diagnosis and a clearer definition of what the condition actually is – these are recent things. There’s no good evidence (that I know of) to suggest the perceived increase is due to vaccines or playing on computers or anything else (edit: Jon Brock says it is indeed demonstrably false); it’s likely always been there, we’re just picking up on it better now. Which is good, because it means more people get the help and support that they need.

Also there’s been a ‘shocking rise in things like happy-slapping’?? Well of course there has, because again this term applies to a phenomenon that’s only been able to exist since mobile phones got video cameras. That does not mean that people didn’t go around beating other people up for fun and to show off to their friends before this era. Sadly I know this from personal experience as I’m sure many do, but good for her if she’s never had to deal with such things.

I do not believe for a second that these kind of people only exist because the internets have created them, by eroding their empathy circuits. There have always been nasty ****s and there always will be, sadly. Don’t blame the internet, or video games, or whatever the latest demon-you-don’t-get is.

When pressed for evidence, instead of offering some, she instead asks if we want to wait and see what kind of evidence emerges? *Ominous sound effect* – That is not an answer, it’s just silly scaremongering. She’s even placing weight in parental concerns, on anecdotes.

Parents will always be concerned about what their kids are up to, it’s the generation gap – every generation is both very different from (in terms of technology in particular) and the same as (regarding concerns, ‘we never did such things!’ ‘you whipper-snappers without any respect’! etc.) the previous ones. Again this is nothing new. To me it just sounds like she’s scared of change and using popular fears as an excuse to criticise.

It’s not so much the technologies in and of themselves that I’m criticising but how they’re used

Nail on the head. If your kid is spending 6 hours straight in front of the TV, damn well turn it off. Go for a walk. You can’t blame Nintendo for the people who spend their lives with the console running, you can’t blame Google for someone staying up until 5am looking at random websites. Discipline your kids and yourself and these things are like any other activity – perfectly healthy in reasonable amounts. Also if my child wanted to hug people for 6 hours, I’d be concerned at the level of clinginess they’d somehow developed.

Hi Ho Silver Lining

What gets me in a real rage about these attacks on social media, the internets and so forth, is that people (especially people who don’t even use it themselves, infuriatingly) are so very quick to not even bother considering the positive outcomes.

I’ve made similar points in the past but I’ll do so again ‘cos I can.

Some people aren’t comfortable in social situations. If you’re so concerned about the people on the austism spectrum, take a bit of time to learn what it is they struggle with, and what helps them. Even for those of us without personal experience of such things, sometimes we all have those days when we’d just rather not have to put on a smiley face and be around people.

For some, that’s more the default setting. That’s not because interaction with other people is completely off-putting, but sometimes the trappings that come with getting together ‘irl’ are just too much. If people are put off by the poking, liking and kind of sharing that happens on FB/Twitter then take a step back and look at what we do offline.

How should I dress? What should I say? What is the tone of my voice conveying? Is this rude? Will I upset them if I say that? What should I do in this situation? Do I have to smile now? Is eye contact creepy? No, if I look away, that’s impolite. Wait, I’m staring. Oh she thinks I’m a complete weirdo. I need to buy the next round? What are they laughing at?

Et cetera. You might not have ever thought these things, but many do, and social interaction can be a stressful experience – think of a time you just wanted to go home to the TV/a book/bed.

But most of us want to talk with people and share bits of our lives. If the above is a regular issue then the internet is an absolute godsend. Again I’m not going to waffle on about my personal reasons for thinking this but would encourage those who are scared of online things ‘replacing real life interaction’ to just stop and reconsider. Maybe, just maybe, the internet is actually a very fulfilling and stimulating environment that does give people a sense of identity and belonging in plenty of cases.

Of course, writing this on a blog isn’t the best way of conveying such a message, I know. So don’t whine at me about that!!

The wealth of information online, both factual things to learn and giving better access to ‘real life’ events and so on, it’s a huge resource that helps people immensely. Liaise with friends, make new ones, find a place to stay at short notice… the list is extensive.

People seem so hell-bent on discovering how damaging the interwebnets are for our brains, they don’t seem to be bothered about the good it’s doing. This happens with every technological leap, like television as she mentions herself; will it replace books?! No, of course not.

If you think Twitter is all people saying what they had for breakfast, I don’t want to talk to you about it. Either give it a try or listen to the people who explain it really isn’t, at least try to get a better idea, or shut up. Don’t knock it if you haven’t tried it, as they say.

If you only update your facebook page to broadcast your personal life then don’t complain it’s all about gossip and invasion of privacy. These experiences are user-driven, they are what we make them, and if I see more of this pointless demonising, I will shout louder.

My friends, whom I cannot refer to as ‘online’ or ‘offline’ because they are largely both (except when there are huge oceans in the way), have kept me afloat when I’ve been too upset to talk on the phone, too much of a mess to leave the house or present myself to people face-to-face.

Thank FSM for the internet because without it… well, imagine! Where would I get to see parrots dancing to horrible pop songs hilariously or cats in all manner of sickeningly cute predicaments. Or indeed hear first-hand accounts from countries descending into civil war, or kids getting beaten by police at legal protests.

Life is not simple, nor is our virtual world. Embrace it/keep your distance, whatever. But don’t be so quick to demonise what you have not even tried to understand or see good within.

That’s the remit of rags like the one that published the silly, distorted story in the first place.

—

I’m not going to go into the video games criticism much; saying that actions don’t have consequences and this could affect how people think is just another I’ve-never-played-them sourced view, in my opinion, and I’ve had rants about all that before as well.

Edit: more people are irritated!

Dorothy Bishop has written an open letter to Greenfield regarding her comments. Edit (2): having received much support and thanks for her letter, one academic chooses to challenge her position. If you want to see how scientists fight, take a look.

Martin has a more serious piece addressing Greenfield’s somewhat shaky claim that she has never linked autism to internet use, following more high-profile individuals losing their rag with her, including Carl Zimmer – documenting the rise of the most amusing #greenfieldism hashtag.

It’s even made it to the Wall Street Journal!

Breaking!! Susan Greenfield causes autism!

16/8/11: More recently, Andrew Maynard (my fellow I’m a Scientist! 2010 contestant) has published an excellent analysis of Greenfield’s latest outing, which came in the form of a video statement published on the Guardian website.

Complementary Responsibilities

I’ve just stumbled upon this article via the Twitters. It’s a blogpost by the Leukaemia and Blood Foundation about some complementary therapy workshops (by @drshaunholt) in New Zealand.

I just want to take some bits from their post and add my own comments as it’s raised an issue in my mind that maybe isn’t condsidered too often in the various ‘communities’ of relevance; medical, skeptical, patient-centred and so on.

Who has responsibility for complementary therapy education?

That’s the question I’ve been pondering, admittedly since about 10 minutes ago so apologies if this isn’t very well-formed.

The therapists?

An obvious candidate would be the provider of said ‘therapy’. However, since we have the unknown quantity of deliberately misleading, fraudulent individuals who are simply out to make money, this is an unwise group to rely on.

This by no means includes everyone working in the ‘field’ but I think we can safely assume that asking a chiropractor if you should pay them to crack your spine because it hurts will result in a resounding “Yes!” in most (but not all) cases.

The patients?

This is the group that most skeptical activities seem to focus on. Sense About Science, for example, aims to arm the public with the tools to ask the right questions and protect themselves against potentially damaging offers of hope, sometimes where none really exists.

We often talk about the people who read the papers and believe poorly-worded articles. People who forsake validated medical treatments in favour of something their mum’s friend’s brother’s daughter recommended and DEFINITELY WORKED. This is another goal of SAS, to address poor science reporting in the media – also mentioned by Dr. Holt.

We’re keen that fewer people allow themselves to be misled and taken advantage of – and I continue to believe this is an important mission, if one that usually feels somewhat futile. If you know your stuff and can be assertive, you can stand up to a barrage of nonsense and come out of difficult situations largely unscathed, and without lining the pockets of charlatans.

What about healthcare professionals?

Here is a group of people oft ignored in this complementary confusion. Regarding the aforementioned Dr. Holt, the blog states:

Shaun is not afraid to tell it like it is. He has had well-publicised battles with both the chiropractic and homeopathic communities due to the lack of evidence that these treatments are effective in helping cancer patients.

Excellent. We need more of these. The diagnosis of a serious illness has to be one of the most traumatic experiences anyone can go through. Healthcare professionals are the ones to break this news and to offer advice and support as people take it in and make their choices about what to do next.

Having clued-up doctors has to be a priority if we’re to help people make sensible decisions for themselves and their families, that will avoid needless suffering and false-hope chasing.

This doesn’t just apply to cancer but to all manner of debilitating and/or potentially life-threatening illnesses:

It is completely understandable that cancer patients will do anything possible to maximise their quality of life and chances of recovery but it does appear that at times certain complementary therapies can interfere with medical treatment.

One of the most famous cases is probably St John’s Wort, a plant and its derived herbal products well-known for supposed anti-depressant properties. However, its active ingredient is also known to interfere with prescription drugs and if people are taken in by those purporting the benefits of ‘all-natural’ treatment approaches, it can lead to disaster.

Something that pro-CAM people will often argue is that there is a place for complementary therapies and patients should be informed of these and given access to them. This may be true to an extent,

Shaun’s research indicates that around five per cent of complementary therapies have real merit in helping address the symptoms and quality of life of cancer sufferers. These therapies include acupuncture, aromatherapy, meditation, art therapy, yoga, certain herbs and vitamins.

However, it should be made abundantly clear that these things are not alternatives, they are not treatments and they will not cure. As Shaun and the blog report lays out,

What must be stressed however, is that complementary therapies can not cure cancer, and it’s really important that patients do not delay seeking conventional medical treatment which may save their lives!

I would like to see a nomenclature change here; therapy can be be somewhat of a misnomer, since we would also apply this term to effective interventions – chemotherapy for example.

These are therapies in the sense that a cup of tea is therapy. Yes, there can be real, measurable benefits but it’s in a more general sense than the treatment of a specific problem in a known, targeted manner.

No one is suggesting we deny people access to lovely things like massages, foot rubs, mugs of tea, candles and fluffy pillows. God, I love candles – my university peers can attest to this (I filled my gigantic room with them and frequently pissed off my housemates with incense. But they let the kitchen descend into a hazardous-to-health state so much it’s not really possible for me to feel bad about it!).

The point is, while it’s good to support ourselves emotionally in difficult times with these little things that can make a big difference in day-to-day life, medical professionals should be clued-up on the associated dangers of fields that make claims bigger than what they can deliver. They should not be shepherding patients in the direction of ‘therapists’ without full explanations of the reality.

Homeopathy will not fix your RSI. Aromatherapy will not sort out your cataracts. Sure, doctors are largely intelligent individuals who won’t fall for any of this stuff, but an alarming number do not know what homeopathy is (or more importantly, isn’t), let alone be able to explain it clearly to someone who’s under considerable emotional stress and may well know nothing at all except hyped-up anecdotes from concerned friends and relatives.

As pointed out by Simon Singh and Edzard Ernst in Trick or Treatment, healthcare professionals hold a lot of responsibility in the drive to educate people about CAM and perhaps it’s time we teamed up with those who are already doing a fantastic job to spread their knowledge so that more doctors can help their patients with these  decisions more effectively.

AMD ain’t no picnic

I’ve been a glutton for punishment again and read the Metro in more detail than is sensible this morning.

I came across this article that appears at first to be telling you that eating paella might stop you developing a debilitating eye disease.

On further reading, it becomes clear that the Metro mentions paella simply because it is made with saffron, the incredibly expensive crocus-derived spice.

Now stop it or you’ll go blind

The reason they’re writing about saffron is apparently due to research suggesting it could protect against AMD – age-related macular degeneration. Now, this is no laughing matter, it’s a very horrible disease that still affects a lot of people (though there have been some fantastic advances in the last decade or so largely due to animal research).

It’s of particular interest to me, since one of the treatment options for the ‘wet‘ form of AMD is trying to stop the growth of new blood vessels; anti-neovascular therapy. This is what our lab specialises in but in the context of cancer – so this kind of research, into angiogenesis (growth of new blood vessels), can be applicable to other diseases, including some affecting the eyes like AMD.

A quick Google and trip to Churnalism.com shows that this is a bit of a recycling exercise of a story that came out in a slightly different guise back in February – using the Daily Mail article, we can see the Telegraph copied about half of it and the Express picked it up as well.

To go back to today’s Metro article, their press release seems to have come from one Dr Kim Julian. To quote the Persavita website (a nutritional supplement company):

Dr Kim Julian (Non-Executive Medical Director; Copenhagen, Denmark) is an eye surgeon and ophthalmologist who runs a private eye clinic in the capital city Copenhagen. Dr Julian has been helping patients with ophthalmo-medical and surgical eye problems in his clinic, and has been performing laser/oculoplastic surgery for the last 18 years.

Dr Julian contributes to every aspect of the business and research at Persavita including product development, and supervision of a pilot study with Saffron 2020^TM for eye health in early stage age-related eye problems.

He has proven experience in developing and marketing eye health and skin care products. Dr Julian is a partner at Ocumedic Aps and inventor of the eye health product Bioflagel for treatment of blepharitis, and the skin care product Epilar. Dr Julian is also CEO of Cold-on-Demand Aps, commercialising his latest invention, the ‘self-cooling can’.

Now, this is what we call in the trade a conflict of interest. He is simply promoting a product.

Saffron 2020

No, it’s not a lovely yellow/maroon cricket kit. This is their product being so kindly promoted by the Metro here, as we see at the end of the article:

Instead of recommending we eat platefuls of paella, he has given his backing to the new Saffron 2020 health supplement which contains 20mg of the spice in each capsule.

Well of course he does, he wouldn’t make any money from you cooking lots of curry, would he?

The one published study I can find is that covered by the Telegraph back in February, from Prof. Bisti’s group. They reported on 25 patients given 20mg saffron daily for 3 months then either 3 months placebo or further saffron, compared to placebo (nothing at all) alone for 6 months, which obviously isn’t really a sensible comparison. You would probably expect them to be receiving some treatment, not nothing, so comparing to placebo is quite likely to make your treatment look good, whatever it is.

Also since these patients have already started developing AMD, I’m not sure why the leap is then taken to marketing capsules of saffron as a preventative measure (apart from making the cash, of course – clinical reasons, I mean!).

Dr Julian, however, is not on this paper so there’s no obvious, immediate connection – I’d suspect that Bisti’s group are actually seriously researching the effects of saffron’s components on AMD (despite alt med proponents’ claims, lots of research groups are looking at naturally-occurring compounds and how they might be incorporated into medicine) and we won’t know the real implications until their further studies have been published.

It seems very presumptuous and opportunistic to be jumping on this preliminary result, making these pills that have all sorts in them:

Saffron 2020^TM is a proprietary new once-daily nutritional supplement made of saffron, vitamin A, vitamin B2, and natural carotenoids lutein and zeaxanthin.  Each capsule contains 20mg of highest quality saffron stigma powder, with color value of 270, indicating high concentration of crocin, the active compound with eye health benefits.
Saffron 2020^TM also contains vitamin C, vitamin E, zinc, copper, and  resveratrol, a naturally occurring polyphenolic compound also found in red wine, which together can help protect DNA, proteins and lipids from oxidative damage and help maintain healthy eyes and normal vision.       Saffron 2020^TM is formulated as a convenient once-daily capsule, with 30 capsules in a bottle.

So you have to buy a bottle of the stuff every month and they’re £25 each (but a handy 3-for-2 offer on now!!). The wiki page does link to evidence of lutein and zeaxanthin possibly having beneficial effects as well, but again this is a preliminary finding that, as is usually the case, requires much more research to allow a solid conclusion to be drawn.

In addition, the Cochrane reviews (here and here) of reported effects of various other vitamins, antioxidants etc. on AMD reports:

There is no evidence to date that the general population should take antioxidant vitamin and mineral supplements to prevent or delay the onset of AMD. There are several large ongoing trials.

Basically, don’t waste your money.

And shame on the Metro for churning out this promotion for another expensive and probably pointless supplement.

NB/ the Metro letters page: mail@ukmetro.co.uk and London Office News Editor: Sarah Getty, Fax: 020 7651 5342, E-mail: news.london@ukmetro.co.uk