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Astrotweeting

Astroturfing is industry supported lobbying in the guise of grass roots activism. It takes its name from Astroturf, the well-known brand of artificial grass.

The first astroturfing group I recall encountering was Microsoft’s “Freedom to Innovate Network”, set up when they were in court over abuses of near-monopoly power. The tobacco industry is the best documented example, with groups such as the National Smokers Alliance being run on behalf of manufacturers by PR firms.

Astroturfing is also alive and well in the field of alternatives to medicine. In fact, it is one of their dominant promotional techniques, and there’s a good reason for that. Let’s say for the sake of argument that you have a product which you want to promote, but where truth in advertising regulations prevent you making any claims of effect; what you can do is make vague suggestions on your own websites and publications and then set up astroturf groups to boost the product. Sometimes these groups may even take on a life of their own and you won’t even have to pay any more (I suspect this is the case with the Burzynski activist groups).

Social media being what it is, astroturfers are making good use of a channel where your real identity can be easily hidden. This could be simple spamming (such as Nicole Evans, who uses multiple Twitter handles like @IntegratedMD and @NowHealthMD to boost her quack articles on helium.com, and who appears to be behind @HealWell, which does little other than retweet these), or it could be more insidious. Undoubtedly the majority of early well-written positive reviews for quack remedies and self-published “miracle cure” books on Amazon are astroturfing, and there’s a strong suspicion that a number of identities in the #Burzynski Twitter tag feed are associated with the clinic.

Part of the problem is that Twitter really does not seem to care at all that people use it to spam and to promote even dangerous quackery. @BoironUSA (with sockpuppets @OscilloUSA, @Arnicare and others) routinely run a “#MommyMonday” promotion (aka #SpammyMonday) with instructions to “follow and retweet to win”, using credulous tweeps to evade even the supine anti-spam policies of Twitter. @1HolisticHealth, @A1HomeRemedies, @A1NaturalWoman, @A1NaturesWay, @NaturalFreak1, @101HomeRemedies, @ANaturalNurse, @HomeRemsNurse, @NaturalHomeRems, @ANaturalHealth1,@AANaturalHealth and @NaturalRems101 don’t even bother to pretend top be different people, the owner simply uses them all to spam exactly the same text continually.

In the end, I suspect the “communications profession” have done a Sellafield on astroturfing. They call it a “social media strategy” and pretend that in some way that makes it not evil. They are this: wrong.

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By Guy Chapman – May 13, 2012

Piggy palace

This is for Tom, mainly. Some pictures of our “piggy palace” in the conservatory. It’s heated by two tubular heaters, switched by a thermostat. The heaters live behind mesh panels with Coroplast partway up to keep the hay in. The run itself is built of the mesh shelving panels (see the box for details of the product), held together with a mix of the shelving assembly blocks and zip ties. The roof is made of building insulation, and one picture shows the two insulation panels that we put on overnight in winter (it’s misleading, the fleeces on the L-shaped section are removed before putting these boards in place). These are then covered with sheets of fleece which go down to the ground, with the two tunnels as doorways. The cardboard boxes also help keep the pigs warm, but they come out during the day. On warmer nights we either leave them uncovered or drape fleece over the L-shaped area, which allows us to turn on one of the heaters to keep them warm. The stat is set to 16 Celsius, and you might notice the sender for an Oregon Scientific temperature monitor (which gives max/min, outside temperature, and temperature of the heated area).

The heaters are 40W and 60W respectively, usually only the 40W is needed, the temperature stays above 15C, we only need both heaters when the other boards are in place and the bigger area is covered. The pigs stay nice and warm but are not brought indoors overnight, which I think is better for them and probably for me and Pete since both of us have allergies. As it is, the small amount of exposure we have to the pigs, which are short-haired anyway, does not trigger any reaction.

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By Guy Chapman – May 6, 2012

Standard Disclaimers Apply

Over on RationalWiki I found an excellent article on the Quack Miranda Warning:

These statements have not been evaluated by the Food and Drug Administration. This product is not intended to diagnose, treat, cure or prevent any disease.

Funnily enough a very similar but more explicit disclaimer applies to sellers of the HCG diet scam:

HCG has not been demonstrated to be effective adjunctive therapy in the treatment of obesity. There is no substantial evidence that it increases weight loss beyond that resulting from caloric restriction, that it causes a more attractive or “normal” distribution of fat, or that it decreases the hunger and discomfort associated with calorie-restricted diets.

The similarity of these disclaimers shows rather nicely that the FDA’s concern is not boosting Big Pharma Profits, but following the evidence.

What’s amazing is that a subset of people will still read these disclaimers as evidence of the FDA’s “bias” against the alternative-to-medicine community, even though it’s plain that HCG is a prescription pharmaceutical manufactured by pharmaceutical companies, so FDA’s failure to license it for the lucrative weight loss market is if anything a blow for big pharma profits.

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By Guy Chapman – April 13, 2012

From the department of not getting it (alt med division)

Here’s a story of comprehensive failure to grasp reality: Riding to make alternative medicine mainstream.

The mechanism to make alternative medicine mainstream already exists, and always has done.

It has nothing to do with bicycles (much as I love them).

What you do is this: design a robust trial methodology, then you test your alternative medicine against placebo and optionally its mainstream competitors, and show unambiguous evidence of effect in properly controlled, properly randomised, properly double blinded  conditions over and above placebo. Do this in a way that can be independently replicated across large numbers of subject patients in multiple locations.

That’s all there is to it.

Magically you will be able to drop the word “alternative” and it will assume the name medicine, because that is the definition of the terms: medicine is that which can be shown to work, alternative-to-medicine is that which can’t. Medicine listens to the message of large, well-designed multi-centre studies.

Unfortunately the lesson of history is that this method spectacularly fails to demonstrate benefit for most alternative-to-medicine products, so the remaining choices appear to be to admit they are bogus (which never happens) or to engage in a combination of lobbying, special pleading, and fallacious appeals to popularity, choice and other irrelevancies.

Free clue: we do not allow alternative engineers to build bridges, we do not allow alternative scientists to build nuclear reactors, and if you have any sense at all you will not allow an alternative practitioner to treat your illness.

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By Guy Chapman – April 6, 2012

Ms Scrayen? Ms Streisand on Line 1

The Streisand effect is what happens when you attempt to suppress something you don’t like, and the attempt blows up in your face, making the thing vastly more prominent than it otherwise would have been.

It’s well known in skeptic circles, but apparently not everyone has heard of it. Take Francine Scrayen, for example.

Francine Scrayen is an Australian homeopath who treated a woman called Penelope Dingle, who was suffering from cancer. Ms. Scrayen persuaded Penelope to forego conventional treatment in favour of homeopathy and a miracle health diet. The result was predictable and not pretty. The coroner’s inquest report is genuinely shocking.

Penelope Dingle was in screaming agony. Scrayen was called and she said that it was al part of the “healing crisis” and said Penelope should not go to hspital. Luckily on this occasion her advice was ignored: the unfortunate victim was hours at most from an almost certainly fatal bowel rupture. The pain was caused by buildup of faecal material because her intestine was entirely blocked by the cancer, a cancer which was self-contained and probably treatable when Penelope first sought medical advice, but was by now seriously advanced.

Doctors managed to save Penelope Dingle but the cancer was advanced and she died not long afterwards, in August 2005.

This is a tragic case. The coroner’s report makes it plain that Scrayen was not a competent medical professional and that her advice to continue alternative-to-medicine rather than conventional treatment was a primary causative factor of Penelope Dingle’s agonising illness and eventual death.

So where does Barbra Streisand come into it?

Dan Buzzard, an Aussie blogger, is a trenchant critic of Scrayen. And Scrayen has now taken it upon herself to send in the lawyers.

This is not going to end well for Francine Scrayen. There is a significant body of skeptical opinion that holds Scrayen entirely responsible for Penelope Dingle’s death, and that view is supported by the coroner’s findings. Most people have not heard of Scrayen. Launching a lawsuit was the single stupidest thing she could do because the skeptical community will rally to Dan Buzzard’s defence. Yes, he may well have been more emphatic than the facts merit, but in the end he is fundamentally right:

Francine Scrayen is a murdering quack.For the avoidance of doubt, the term “murdering quack” is a rhetorical device and a quote from Harry Harrison’s “Stainless Steel Rat” books. While I believe on the facts presented that Ms. Scrayen is culpable in the death of Francine Scrayen it is likely that a charge of murder would not stick because death must occur within a year and a day, and because she probably believed that her nonsense was genuinely going to work. So the word quack is amply justified and the word murdering is a rhetorical shorthand for one who causes the death of another through grossly negligent behaviour. And we are all Spartacus.

If I were him I would be tempted to refer Ms. Scrayen’s lawyers to the response given in Arkell v. Pressdram (1971).

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By Guy Chapman – April 5, 2012

Why I love the NHS

The NHS is not perfect, but at its best it can be unutterably wonderful.

My sister Laura died a few years back. it was very sudden, her illness was much further advanced than usual on admission because she was so strong and had fought it off. The intensive therapy unit at Durham were fabulous. They treated us like visiting royalty and when Laura died the nurses were in tears. They laid her out in a side room, cleaned up and serene, with soft lights and music. It chokes me up to remember it.

The NHS can also be bad. The anguish when Dad died, trying to get him into a ward and out of the “rapid” assessment unit. This is the reality of the cash-starvation the NHS has suffered for decades.

The Government seems to think that the best way to improve the NHS is to look to the US, where health care is massively more expensive, and massively more unequal, and that this will allow them to save money. Rather than looking at the best parts of the NHS, they choose as a model a system which is money-dominated, not patient dominated.

When I come to my last days I hope I will be in the hands of nurses who cry when patients die, not accountants who only cry when your credit card is declined.

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By Guy Chapman – March 18, 2012

Policy-based evidence making

This is by way of a brief return to an old theme. When people want something to be true, but are confounded by a lack of evidence, they may set about trying to create evidence to somehow make it true.

The evidence they create will have a tendency to be less than wonderful as an inevitable result of its having been created to serve an agenda rather than out of a genuine spirit of inquiry.

For example, the original and still most widely cited paper on cycle helmets, by Thompson, Rivara and Thompson, was conducted in order to give them something they could cite as part of their campaign for helmet compulsion. It compared two widely dissimilar groups of cyclists with completely different collision profiles; assumed that their helmet wearing rates were the same even though one of the authors already had figures showing they were not, compiled as part of an already planned “why-oh-why” piece to follow up; and compared the two, asserting that 100% of the difference between them was due to differences in helmet wearing rates. The figure of 85% predicted saving in head injuries has, unsurprisingly, never been approached by any other study, is contradicted by every known time series form a real population, but is still cited by helmet promoters as gospel.

The HCG Diet Council has decided that the best response to the FDA shutting down their fraudulent trade is to create some evidence to contradict the decades-old consensus that HCG does not promote weight loss. No doubt they will produce some papers which they can use to argue that there is sufficient validity that they should be allowed to carry on the trade they should not have been carrying on in the first place because HCG is not and never has been approved for weight loss.

Homeopaths tout a “Swiss Government Report” which says that homeopathy is safe and cost-effective. This report is written (who’d have guessed?) by true believers and begins, in its opening paragraphs, by stating as a premise the question it was supposed to be testing: that homeopathy has validity as a modality. It dismisses as “unfortunate” the publication of the meta-analysis by Shang et. al which concentrated on  randomised clinical trials. The sole basis for regret appears to be that these trials – required for medicines but not for  homeopathy – provide strong evidence that the only thing distinguishing homeopathy from placebo is observer bias. As a reason for dismissing a study, claiming that concentration on the best form of evidence is wrong because it delivers the “wrong” result sounds like special pleading.

The government’s consultation on the NHS bill which included all shades of opinion from uncritical to wildly positive, and only omitted people like the BMA and RCN (what use could they possibly be in deciding changes that they will be forced to implement?) is only the latest in a never-ending series of official policy-based evidence making.

People, this is the equivalent of Private Eye’s satirical GCSE paper questions when the Tory government started micromanaging educaiton back in the 80s: “Deplore, in not more than 50 words, one of the following:”

We are all subject to confirmation bias. Please, when conducting research, at least try to exclude it from the study design?

Posted in Cycling, Politics, Science.

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By Guy Chapman – March 17, 2012

What’s more likely?

Prompted by the excellent “Homeopathy and its kindred delusions“, a remarkably thorough and methodical takedown of the nonsense that is homeopathy even while Samuel Hahnemann was still alive, I was struck by the parallels of one line of reasoning with the current furore over Burzynski.

In case you hadn’t noticed, Stanislaw Burzynski is a Polish-born physician resident in Texas whose Burzynski Clinic offers a “pioneering” cancer treatment he calls antineoplastons (peptides originally isolated from human urine). His treatment is controversial for many reasons, including the immense prices charged for the treatment despite its being theoretically still in clinical trials.

In the run up to some undoubtedly high profile court cases in the US (he has already been convicted of trade violations and fraud), a film has been released which sets out his stall as a lone maverick genius suppressed by the medical establishment. The film is touted as a documentary, though:

“Eric Merola, a former art director of commercials, is either unusually credulous, or doesn’t understand the difference between a documentary and an advertisement, or has an undisclosed relationship with the subject of his allegedly nonfiction first film. Consciously or not, Merola is shilling madly for Dr. Stanislaw Burzynski” (“QUACK-QUACK Goes Burzynski“, Village Voice, Jun 1 2010).

Burzynski has a ferocious and dedicated fanbase, practiced in the usual emotive arguments and legalese posturing. There is sufficient ambiguity that  while The Guardian was publishing details of threats against teenaged blogger Rhys Morgan, The Observer was attacking Morgan for undermining the hope of a terminally ill child. And yes, that is ignoring the question of whether false hope is better than no hope.

A quick test: what’s more likely?

So for me it comes down to this: which side i this dispute is more likely to be right?

To sort through my ideas I made a couple of lists.

Either… Or…
  • A lone genius discovered the cure for cancer in 1977, something tens of thousands of scientists and doctors have been hunting for most of the last century.
  • The medical world, apparently upset at being beaten to the punch, ostracised him.
  • The medical establishment conspires to prevent him publishing in the major journals, and manages to keep this quiet – not a single leak.
  • The US Federal Food and Drug Agency mounts a conspiracy against him, and manages to keep this quiet.
  • The Texas Attorney General’s office joins the conspiracy and also manages to keep it quiet.
  • Nobody else in the entire world, in all the years since Burzynski’s first discussion of the cure in 1977, despite the identities of the drugs being well-known, has managed ot replicate his genius work.
  • The sinister conspiracy has secured the complicity or at least the silence of every scientist, doctor, drug company, charitable foundation and government health agency in the world, all without a single leak.
  • The same lone genius has also discovered the cure for Alzheimer’s disease and skin ageing.
  • He’s a charlatan.

Hmmm. Which is more likely?

 

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By Guy Chapman – March 5, 2012

Letter to Reading Chronicle re. Burzynski

To the editor of the Reading Chronicle:

Hi. I have seen the website that Amelia Saunders’ parents have put up at <http://www.ameliasmiracle.com/> – it says they are talking to the Chronicle about the case.

It’s a heartbreaking story, but the backstory is sinister and very hard to tackle objectively, as the Guardian found out recently.

The #Burzynski clinic, to which I understand the Saunders’ wish to take Amelia, is, to put it mildly, controversial. Burzynski has been conducting his “antineoplaston therapy” since the mid-70s and although he has amassed an impressive looking list of published papers, very few of these actually contain references to his own primary research. In fact since he was convicted of violating cross-border trade laws and subsequently of health insurance fraud, I can’t see any references to publications of his study results. He’s been conducting clinical trials – normally free to patients – at incredible cost, often hundreds of thousands of dollars, I cannot find any other single individual who is conducting anything like that number of trials simultaneously, and yet he has failed to publish the results of any of them.

The few attempts that have been made to replicate his work have led to failure, in one case being terminated due to the rapid deterioration of patients.

The idea of the pioneering American providing cutting-edge therapy that the NHS will not fund is politically seductive, but rarely actually true. The UK carries out some of the most important cancer research in the world. Burzynski portrays himself as the “lone maverick” and weaves a web of conspiracy theories to explain away his troubles with the FDA and other health bodies. I think it’s unlikely to be that simple.

Anyway, before going to bat for Amelia I’d like to urge you to read up on the Burzynski clinic. Cancer Research UK have a nicely neutral piece on it at <http://cancerhelp.cancerresearchuk.org/about-cancer/cancer-questions/what-is-antineoplaston-therapy> – and the Guardian shows the more sinister side: <http://www.guardian.co.uk/commentisfree/cifamerica/2011/nov/30/burzynski-clinic-cancer-libel-laws>.

It’s a story full of human interest, but also one ripe for exploitation of the generosity of kindhearted strangers: <http://scienceblogs.com/insolence/2010/05/harnessing_peoples_good_to_pay_for_woo.php>.

Genius or quack? Maverick or charlatan?

In fact, it is the kind of story that a newspaper can cover very well, because it can give space to nuanced views. It will be interesting to see if you take this up.

Guy Chapman

[name and address supplied]

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By Guy Chapman – March 4, 2012

More research needed

A plaintive cry from the homeopathy fan club is that more research is needed into homeopathy, with the implication that this research will somehow prove their case.

A lot of research has already been done.  According to several meta-analyses the evidence falls, in the main, into one of two categories:

  • Poorly conducted trials (unblinded, small data sets, anecdotal, self-reporting, lack of evidence of dropout rates). These tend to be carried out by homeopaths and to support homeopathy.
  • Better-conducted trials without those flaws. These tend to conclude that homeopathy is no better than placebo.

Very little of the evidence attempts to overcome the fundamental issues that skeptics have with homeopathy: that no credible mechanism exists by which a substance can have an effect when diluted beyond the Avogadro limit, or that any such effect could be transferred to a human body in terms of some healing process by means of an intermediary (usually a sugar pill); and that the fundamental “law” of homeopathy, “like cures like”, is not a law of nature at all and in fact cannot be shown to be true in more than a small number of well documented cases (see hormesis).

Is more research justified?

Not at the public expense, and certainly not until the two fundamental mechanistic issues are resolved. But if the homeopaths would like to do some research that might finally begin to reduce the amount of skeptical backlash against them, I suggest the following:

  1. A credible generalised proof of the “law of similars” (let like cure like) which is the fundamental tent of homeopathy. This is based entirely on an extrapolation from a single data point and has been taken on trust by homeopaths ever since. There is absolutely no evidence that this is generally true, in fact other scientific knowledge tends to suggest that it is almost universally false.
  2. A credible generalised proof of the principle of “potentisation” which shows that an objectively measurable curative effect results from serial dilution, and results only when performed in the specific way demanded by homeopathy.

Without these two concepts being proven, any amounts of “it works for me” anecdote will remain unpersuasive, because that result is completely consistent with the null hypothesis of placebo effect plus observer bias.

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By Guy Chapman – February 25, 2012