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Posts Tagged ‘medicine’

Bravo, Jessica Ahlquist. If you’ve been slacking off following her story as much as I have, go read JT’s summary of events so far, and this follow-up. Oh, and these examples of religious intolerance from Christians abusing their privilege, including many actively calling for this 16-year-old girl’s murder. Stay classy.

– It sounds like this has a long way to go before we can tell whether it’ll pan out, but this potential cure for chronic pain could be a huge deal.

– You know, if shiny and rather homogeneous tits are your thing, then Zoo magazine might be for you, but it’s not the place to find “real” girls. The term “real” is perhaps unfortunate, since skinny people aren’t exactly fictional, but if you want a better representation of humanity’s natural beauty, put down the lads’ mags and visit the Adipositivity Project (NSFW) or something.

– If girls wanting to join in means that you can’t enjoy your video games any more, you’re doing it wrong.

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– A translation of the faux-controversial phrase “Merry Christmas”: “I am offering you good will in a way I know how“.

This is a very unsettling article about the not-too-distant future, and I profoundly hope it proves to be accurate.

– Good to see Obama’s not slacking off at all after winning that Nobel Peace Prize.

– Hairy comedy music god Tim Minchin wrote and performed a new song about Jesus for the Jonathan Ross show recently. It wasn’t included when the show aired. Whether or not the reason for this, as is widely suspected, was due to some ITV exec’s utterly pifflesome and bollocksful fears about offending religious people is not entirely clear. But it’s a cracking song. And you can watch it here.

 

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The Burzynski Clinic have issued a press release, presumably in response to the recent unflattering media attention they’ve been getting.

The first thing I notice about this official statement is that the clinic’s motto on their letterhead reads: “First, Do Not [sic] Harm!”. Which is different from the one on their website, which uses the more common “Do No Harm”. This is funny.

More pertinently, they address the issue of Marc Stephens, the bizarre presumably-not-a-lawyer who’s been harassing Rhys Morgan and intimidating other bloggers while claiming to represent the Burzynski Clinic. They describe him as an “independent contractor”, and confirm that he was working on their behalf when he sent those emails.

He now “no longer has a professional relationship with the Burzynski Clinic”. But as far as mop-ups of terrible PR messes go, they seem to have turned the taps off and declared that everything’s fine, while ignoring the water sloshing about their ankles. They’re still planning on taking legal action against bloggers who they believe have made “false and defamatory” factual statements.

Also, as I write this, Marc Stephens is still listed as the “Marketing & Sponsorship” contact for the Burzynski Patient Group (a distinct organisation from the Burzynski Clinic). The extent to which the relationship has in fact been severed seems unclear.

Orac has some comments about the irrelevant or misleading nature of the purported factual misstatements that the Clinic are concerned by. But more fascinating is Jen McCreight’s analysis of the Burzynski Clinic’s publications, as cited in support of Burzynski’s antineoplaston therapy in the press release.

There’s a long list of very official-looking formal publications, which seem to be examples of solid evidence which Burzynski has found and published, despite the claims of some of his detractors. But, as Jen has uncovered, they’re little more than blustering noise.

The first paper listed was published in a journal with no impact factor at all, which bodes ill for its credibility within the overall scientific discipline. The next one was published in an alternative medical journal with poor standing among oncology journals as a whole. These aren’t grounds to discredit both papers entirely, but they highlight the need for controversial results to be reproduced and reviewed in a more mainstream journal before we put too much trust in them. The next is from a very odd journal whose role in the medical community seems hard to pin down, and whose reputation or reliability are entirely unknown.

The remainder of the list, and the majority of the “scientific articles” the Clinic chooses to offer in support of their therapy, are, according to Jen, not even from published papers. They’re all from research presentations, where any scientist has the chance to present preliminary results, before going through any kind of peer review process. So these citations all say absolutely nothing about the quackitude or otherwise of what Burzynski chose to present. They’re not of peer-reivewed studies.

Clearly, there still hasn’t been any convincing data released by Burzynski to support his claims for cancer treatment, despite clearly having a lot of data available which he’s choosing not to share in a scientifically rigorous manner.

The press release mentions Laura Hymas, who is currently on antineoplaston treatment with the clinic. They say that she’s doing well, and “her tumor is shrinking”. Whether or not there’s credible science buried somewhere in there, I hope they’re at least right about that.

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A man named Dr Burzynski believes he can treat cancer through an entirely new form of therapy.

I don’t know if this is true, but other people have been trying to find out.

Orac has previously reported on some of the reasons why most physicians doubt that Burzynski’s method is as effective as he claims. The evidence supporting his claims appears to be mostly anecdotal, and the only results he’s published are ones which nobody else has yet been able to replicate.

When someone makes a world-changing assertion like this, good scientists will want it to be checked carefully to make sure there isn’t some mistake, before they accept that it’s true. This becomes an especially acute concern when, for instance, mainstream newspapers run full-page stories about a four-year-old girl with a rare and inoperable brain cancer, for whom a multiple-celebrity-endorsed fund has been set up to get her the help she needs.

This should not be a controversial opinion: When the parents of a young girl with cancer are trying to raise hundreds of thousands of pounds to make their daughter healthy, it is the profound responsibility of everyone involved to make sure that that money’s not going to be wasted.

Sadly, Andy Lewis thinks it might be.

Even sadlier, he’s being sent obnoxious and inane libel threats as a result of his trying to help.

Someone claiming to “represent” the Burzynski Clinic (although in what capacity is unclear, as he doesn’t seem to be a lawyer) has demanded that Andy stop “defaming and libeling” his client with “factually incorrect” information. Weirdly, he doesn’t want to say what the information is.

Andy wrote back a number of times, expressing every desire to correct and amend any such errors of fact he might have made, and asking exactly what part of the blogpost in question is at issue, pointing out that anyone wishing to sue for defamation will need to express the exact wording they find objectionable. The not-lawyer responded with more threats, and a continued lack of any specifics, as well as a number of phrases like “Quackwatch, Ratbags, and the rest of you Skeptics [sic] days are numbered”, and “when I present to the juror that my client and his cancer treatment has went [sic] up against 5 Grand Juries”, which are weird and unprofessional on several levels.

This apparent representative of Burzynski appears grammatically and legally incompetent, and has received the famed “misconceived and illiberal” label from Jack of Kent. And he’s sure as hell not improving the scientific credibility of this purportedly legitimate medical facility.

Andy Lewis wrote an article, because he was concerned about the welfare of a girl, whose parents have raised considerable funds from many generous sources, and whose proposed treatment is unproved by any scientific standard and has been undergoing “trials” (in which people can be enrolled for a vast fee) since 1977 with no significant progress in publishing positive results.

The Burzynski Clinic still aren’t publishing any results for peer review in a respectable journal. But they’re making legal threats toward people who are concerned by the lack of evidence for their grandiose claims. Andy sums up the problem with this approach:

Dr Burzynski presents himself as a man of science. But, I would say to him and his associates, a man of science would welcome critical appraisal, would publish all the data he has, and allow the world to come to conclusions based on how good that evidence is. A man of science would not threaten critics and try to silence them. That is a sure and certain way that you will end up harming patients.

Such actions are typically not those of someone concerned with scientific truth but of someone concerned with protecting a multi-million pound income stream.

I’d be surprised if Burzynski takes his advice. I think we’ve already got enough representative data of how this particular clinic operates.

Also worth reading: The Twenty-First Floor, and Josephine Jones.

Edit: Something I just saw before posting this. Keir Liddle points us toward a petition for the Burzynski clinic to release their trial data. It can only help the cause of truth and public health for them to do so. It can only obfuscate the truth, and protect a profitable business that’s failing to deliver on its claims, if they keep it hidden.

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Okay, no. I’m not actually proposing a direct causative link between those two things; I’m not the Daily Mail. The evidence that proximity to Republican presidential candidate Michelle Bachmann causes life-threatening illness is, at best, hazy and inconclusive.

What has happened is that she has strongly opposed a certain vaccine, which is known to prevent cervical cancer in women, and which fellow White House wannabe Rick Perry attempted to mandate for all girls of a certain age in the state where he was Governor.

The safety of the vaccine is well understood, by a number of scientific bodies which have explored the matter in some depth. Michelle Bachmann, however, reminded us that there’s another side to the story:

I had a mother last night come up to me here in Tampa, Florida, after the debate. She told me that her little daughter took that vaccine, that injection, and she suffered from mental retardation thereafter. It can have very dangerous side effects… This is a very real concern.

An HPV vaccine causing “mental retardation” is entirely implausible and unsupported. If anyone can produce the medical case file from this woman’s daughter which would demonstrate otherwise, there’s a $10,000 prize up for grabs:

 

 

The host of the above video suggests that, in fact, Bachmann concocted the entire story for the sake of a talking point. The malice of that speaks for itself, but let’s be charitable and assume she really did have an encounter, much as she described. She may be fudging the details or remembering things in a somewhat more convenient way than they really occurred, but let’s be generous.

What do her subsequent actions tell us about the way Michelle Bachmann sees the world?

There are three possible conclusions which I think we can draw:

  1. Michelle Bachmann thinks she’s doing science. That is, she really believes that – to borrow Stephen Colbert’s phrase – citing a study in The New England Journal of Some Lady I Just Met is a legitimate way to reach valid scientific conclusions. One person told her that this thing happened; ergo, there is a “very real concern”.

    Now, I’m willing to credit Michelle Bachmann with a great deal of ignorance about how science works, but this still seems unlikely. Imagine she’d been approached, instead, by a different stranger, with a similarly compelling but equally false story. Let’s say it was someone whose daughter ate some Gouda cheese, and immediately and as a direct result developed a crippling phobia of her own elbows. Would Bachmann have brought up the “very real” concern caused by this particular dairy product, for the sake of protecting the nation’s children?

    I’m going to suggest that she wouldn’t. I think that, in most cases, Michelle Bachmann would not accept the truth of just any anecdote from a complete stranger, as well as the broad conclusions drawn from it. There must be some other reason why she trumpeted this particular one so vehemently.

  2. Michelle Bachmann thinks the science is on her side. Maybe she understands that this one random woman she met doesn’t prove anything, but believes her case to exemplify a more general truth. It’s just an anecdote, but it’s representative of what’s going on elsewhere. She knows that there is scientific data to back her up, but a personal story is something that people can relate to more easily.

    This also would require a substantial and worrying ignorance about the current scientific understanding of how the world works, but I find it more plausible that Bachmann actually is that disconnected from reality.

  3. Michelle Bachmann doesn’t care about science. She’s trying to score some points against a political opponent, and knows that using the right kind of scary rhetoric, talking about “innocent little 12-year-old girls [being] forced to have a government injection”, will turn her into the morally courageous candidate in the eyes of many Americans who aren’t inclined to think about this in a lot more detail. The science behind the alleged vaccine dangers doesn’t matter to her nearly as much as people’s perceptions of it.

    This is perhaps the most cynical option, but a politician caring less about reality than about their public perception is hardly unprecedented.

My guess is that it’s mostly 3, which may also be powering the delusion of 2. What do you think?

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Now that I’m awake, here’s one isolated thought about the Pratchett-inspired right-to-die discussion.

At times, the conversation on assisted suicide takes a similar trajectory to the debate around rape.

Bear with me on this.

For some, all human life is considered sacred and should never be forfeit, however miserable and painful and pointless an existence it may have become. But many people, while willing to admit that it wouldn’t always be a moral abomination to allow someone to end their suffering, are still uneasy about endorsing any sort of legal sanctioning of euthanasia.

While the basic idea might be relatively uncontroversial, they’re worried about the unwanted consequences.

They’re worried about the elderly and infirm feeling pressured to end their lives prematurely, for the sake of not being a burden. They’re worried about people giving up too early, and resorting to suicide before the options for improving or extending their lives have been truly exhausted. They’re worried about the potential for abuse of this system, perhaps by medical staff for the sake of convenience, in the case of patients with no available next of kin and nobody to represent their best interests.

None of these is trivial. These issues and more all need to be taken into consideration if we’re actually going to start changing laws or establishing institutions to help people end their lives. Nobody wants to just go running through the streets shouting “Free hemlock for everyone, come and get it!”

But sometimes – and this was evident in some of the response to Pratchett’s documentary – these concerns obscure the actual issue, and people lose track of whose benefit we’re meant to be doing this for in the first place.

Which is, primarily, people who are heading painfully and senselessly toward the end of their lives, and would like to just cut out some of the deeply unpleasant bit which is all they’ve got left.

I’m not sure quite why the rape comparison occurred to me, but there are some parallels. There are often concerns raised about people being wrongly accused of sexual assault, or how a particular legal approach might affect our societal attitudes more broadly. And these are non-trivial issues which absolutely deserve to be examined in more depth than I’m going to here.

But, sometimes, these legitimate points can be amplified to the point where they drown out the original concerns of victims of rape or sexual assault altogether. When this happens, it ends up sounding like we should just give up trying to find ways to help mostly-women, due to fears of potential negative consequences for mostly-men.

We don’t have to assume there’s no smoke without fire when it comes to rape, and we don’t have to be lackadaisical about letting old people die. But we can still do something, and be driven by compassion. Don’t let’s forget who we’re supposed to be trying to help.

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Sir Terry of Pratchettshire’s recent documentary about assisted suicide has made for quite a notable occurrence. You can still watch it online, if you live in the UK or know some nifty trick to persuade your browser that you do.

Not all the public reaction has been positive, though, to what sounds like a basically humane and sensitive look at an important subject. Peter Saunders of the Christian Medical Fellowship, for instance, has noted some facts that were not included in the documentary. I know, I was shocked as well to learn that a one-hour programme didn’t contain the entire history of everything. And oh look, Nazis!

Political Scrapbook is familiar with this guy’s rather tawdry-sounding organisation, and there’s not a lot needs to be said about it. But I’m sure some legitimate criticism of the assisted suicide movement may exist, and no doubt there are some important points to be considered which deserve more of an airing than this documentary afforded them.

I’m too sleepy to start getting all philosophical about it myself just now, but feel free to give me something to bounce off of in the comments.

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Side effects may include congenitalia, feet of clay, and robotulism.

If you listen to some supporters of alternative medicine, it will soon become clear that there are people who are in the pay of “Big Pharma”, who take money from pharmaceutical companies to publicly make statements supporting mainstream medicine.

These people, according to the alt-med fanatics, include absolutely everyone else in the world.

Seriously, it’s bizarre how vast a conspiracy against alternative medicine these people seem to hallucinate is out there. And I don’t know why anyone with a dissenting opinion in this field has to have some kind of sinister agenda. It’s pretty much a one-way thing. Skeptics don’t assume anything so despicably orchestrated about the alt-meds, we just think they’re wrong.

Rhys Morgan, for instance, regularly gets accused of being a “shill” in the pocket of big sinister corporate greed. Now, Rhys’s origin myth isn’t exactly up there with Spiderman’s, in terms of comic-book implausibility. He was diagnosed with a pretty icky condition called Crohn’s disease last year, started talking to other sufferers online, and heard plenty of stories about how other people are attempting to treat it. Some of these stories were further from the mainstream than others, and some just seemed crazy. He called out one particular idea for being dangerous and unfounded, and thus a hero was born.

Is it really so hard to imagine that he might’ve managed all this himself, and come to the conclusions he did through, y’know, thinking, rather than simply obeying his paymasters? Even if you think his conclusions are wrong, why not assume he just made a mistake? Why the need to fantasise about a dastardly plot?

But another question about the whole idea of pharmaceutical companies paying random bloggers to fake an opinion is: When has that ever happened?

I mean, are there any verified instances in any other field, of someone with a big financial interest individually paying off a whole bunch of little guys to so persistently and repetitively spout these opinions? If the only reason people like Rhys and Orac ever say anything negative about alternative medicine is for the regular paychecks, then they must be making some nice earnings on this nearly full-time job. And I know of nobody but “Big Pharma” who could possibly find such a thing worthwhile.

Also, Rhys was fifteen years old at the time of the infamous Bleachgate post. What the hell kind of corporate executive would sign off on a PR project like this? Think about how much shit they’d be in if any proof of these numerous alleged financial transactions ever turned up, even when they don’t involve minors.

Until someone can produce the receipts for all this pharma-whoring that’s supposed to be going on, the tedious “Big Pharma shill” accusation continues to be a lame distraction from the legitimate criticisms against alternative medicine, to which its proponents have no substantial response.

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Dr Kevorkian died this week. There’s been significant support for his work on assisted suicide for some time now, but he’s still by no means universally shaken off the grim mantle of “Dr Death”. He spent a lot of years in jail, and more with serious legal restrictions on what he was allowed to say and do. He seems to have generally stood up to authority with commendable aplomb.

The whole euthanasia thing is tricky, but I think it deserved some more unapologetic support for the side of allowing people to end their suffering, and Kevorkian did a lot to help that.

Again, it’s the weekend, so no particularly deep thoughts. Feel free to argue with me below, though.

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Jamie Bernstein has a two-part report of her recent experience at an AutismOne conference, over at Skepchick and Friendly Atheist. Both parts are really worth a read.

The first part is mostly a write-up of the rather unsettling package of speakers and other happenings lined up for the event, including a speech from fraudulent non-doctor Andrew Wakefield about how cruel the rest of the world is to conspire against them by, y’know, pointing out they’re endangering countless lives by distorting science. There was also some pretty kooky self-help psychobabble, and some booths offering a variety of wacky stuff like homeopathy, which you might think should be wholly unrelated to either autism or vaccines, but which probably all tend to appeal to people of a certain frame of mind for the same sorts of reasons.

Part Two is sad in a whole other way. Jamie went along to this thing with a guy called Ken Reibel, who’s an active and somewhat well known part of the reality-based side of the online autism community. At some point in the day, it seems like someone on the staff organising the conference realised who he was – and things suddenly start getting tense.

In short: they were thrown out, despite not really doing anything wrong or being disruptive in any way, and it was pretty clear that the only reason for it was that they knew that Jamie and Ken were not reliable followers who could be trusted to toe the line and stick to the mandated set of beliefs.

Now, these people don’t have to be thrilled to have someone around who they know has written extremely antagonistic things about them in the past. And it seems to be within their accepted policy to be able to refund a visitor’s entrance fee and ask them to leave the premises at any time. But even if they’re legally within their rights, it displays an impressively determined closed-mindedness, to evict someone on no other grounds than that they are known to hold a contrary opinion. These visitors weren’t kicking up any kind of a fuss, and had given no indication that they would do so.

You do only tend to find this fragile, defensive, and rather pathetic attitude in isolated pockets of woo. I’m not aware of any skeptical or rationalist event where somebody has been thrown out on such tenuous grounds. In fact, when believers turn up at skeptical events, it can lead to some interesting conversation – the first instance that springs to mind is when Hayley Stevens and Rose Shapiro were questioned about homeopathy during a Q&A session following an interview. The guy was a little insistent, and eventually they had to just move the discussion on, but he was never deemed unwelcome simply for holding alternative views.

On the other hand, anti-science campaigners have something of a track record of this kind of thing, such as when a student was kicked out of the Creation “Museum”, or when PZ Myers was pulled out of the line to see a film that he was in.

It seems to say something about whose aims include open debate, and whose are more focused on self-confirmation and ignoring dissent.

There’s more on this from Orac and Ken Reibel himself.

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