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HuckleB

HuckleB's Journal
HuckleB's Journal
January 13, 2012

Autistic Advocacy Group Condemns Presidential Appointment of Anti-Vaccine Activist Peter Bell

http://leftbrainrightbrain.co.uk/2012/01/autistic-advocacy-group-condemns-presidential-appointment-of-anti-vaccine-activist-peter-bell/

"Peter Bell of Autism Speaks has been appointed to the President’s Committee for People with Intellectual Disabilities. As I read about the appointment I felt that there would be some reaction. Perhaps even a strong reaction. And, as you will see, I was correct. The Autistic Self Advocacy Network (ASAN) has issued a press release condemning the appointment.

... (from the press release) ...

The Autistic Self Advocacy Network, the nation’s leading advocacy group run by and for Autistic adults, today expressed concern and disappointment over President Obama’s announcement Tuesday of his intent to appoint anti-vaccine activist Peter H. Bell as a member of the President’s Committee for People with Intellectual Disabilities.

“Bell’s appointment shows such contrast to the forward motion the Obama administration has shown in the areas of autism and disability as a whole,” said Melody Latimer, ASAN Director of Community Engagement and an autistic parent of autistic children herself.

Bell, Executive Vice President of Programs at Autism Speaks, has a long history of supporting anti-vaccination related causes, dating back to his time as President and CEO of Cure Autism Now, which merged with Autism Speaks in 2007. Despite wide ranging scientific evidence to the contrary, Bell and others in the anti-vaccine movement have long maintained the existence of a link, a position viewed as irresponsible by many public health advocates.

..."


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Very interesting.

January 9, 2012

The Rebranding Of CAM As “Harnessing The Power Of Placebo” - Illuminating Ted Kaptchuk's Sales Pitch

http://www.sciencebasedmedicine.org/index.php/the-rebranding-of-cam/#more-18610

"...


There was a time not so long ago when proponents of unscientific medicine tried very, very hard to argue that their nostrums have real effects on symptoms and disease above and beyond placebo effects. They would usually base such arguments on small, less rigorously designed clinical trials, mainly because, if there’s another thing I knew before from my medical education but that has been particularly reinforced in me since I started blogging, it’s that small clinical trials are very prone to false positives. Often they’d come up with some handwaving physiological or biological explanation, which, in the case of something like homeopathy, often violated the laws of chemistry and physics. Be that as it may, the larger and more rigorously designed the clinical trial, the less apparent effects become until, in the case of CAM therapies that do nothing (like homeopathy), they collapse into no effect detectable above that of placebo. Even so, there are often enough apparently “positive” clinical trials of water (homeopathy) that homeopaths can still cling to them as evidence that homeopathy works. Personally, I think that Kimball Atwood put it better when he cited a homeopath who said bluntly, “Either homeopathy works, or clinical trials don’t!” and concluded that, for highly implausible treatments like homeopathy, clinical trials as currently constituted under the paradigm of evidence-based, as opposed to science-based, medicine don’t work very well. Indeed, contrasting SBM with EBM has been a major theme of this blog over the last four years. In any case, for a long time, CAM enthusiasts argued that CAM really, really works, that it does better than placebo, just like real medicine.

Over the last few years, however, some CAM practitioners and quackademics have started to recognize that, no, when tested in rigorous clinical trials their nostrums really don’t have any detectable effects above and beyond that of placebo. A real scientist, when faced with such resoundingly negative results, would abandon such therapies as, by definition, a placebo therapy is a therapy that doesn’t do anything for the disease or condition being treated. CAM “scientists,” on the other hand, do not abandon therapies that have been demonstrated not to work. Instead, some of them have found a way to keep using such therapies. The way they justify that is to argue that placebo medicine is not just useful medicine but “powerful” medicine. Indeed, an article by Henry K. Beecher from 1955 referred to the “powerful placebo.” This construct allows them then to “rebrand” CAM unashamedly as “harnessing the power of placebo” as a way of defending its usefulness and relevance. In doing so, they like to ascribe magical powers to placebos, implying that placebos can do more than just decrease the perception of pain or other subjective symptoms but in fact can lead to objective improvements in a whole host of diseases and conditions. Some even go so far as to claim that there can be placebo effects without deception, citing a paper in which the investigators — you guessed it! — used deception to convince their patients that their placebos would relieve their symptoms. Increasingly, placebos are invoked as a means of “harnessing the power of the mind” over the body in order to relieve symptoms and cure disease in what at times seems like a magical mystery tour of the brain.

Part of what allows CAM practitioners to get away with this is that placebo effects are poorly understood even by most physicians and, not surprisingly, even more poorly understood by the public. Moreover, we all like to think that we have more control than we do over our bodies and, in particular, illnesses and symptoms, which is why the selling of placebo effects as a means of harnessing some innate hidden power we have to control our own bodies through the power of mind is so attractive to so many, including some scientists and physicians. Exhibit A is Ted Kaptchuk, the researcher from Harvard University responsible for spinning an interesting study of placebo effects in asthma into the invocation of the power of placebo. Kimball Atwood has written extensively about Kaptchuk recently, revealing his rather dubious background and arguments. More recently, however, Kaptchuk seems to be everywhere, appearing in articles and interviews, promoting just the argument I’m talking about, that CAM is a way of harnessing placebo effects, so much so that I felt it was time to take a look at this argument.

...

Michael Specter quotes Ted Kaptchuk as asking, “Do you think this entire field is based on a foundation of magical thinking, or do you not?” That is the wrong question, a massive strawman in fact. No one, least of all myself, that I’m aware of is arguing that the entire field of placebo medicine is based on magical thinking. In fact, I find studies of placebo effects intriguing and often worthwhile. I am, however, arguing that the way that people like Ted Kaptchuk co-opt placebo effects as evidence for “powerful mind-body healing” or as a rationale for using placebos like acupuncture, homeopathy, or “energy healing” is based on magical thinking. After all, we already know that empathy and paying attention to patients improves their perception of their symptoms and treatment with SBM also has a placebo component. We don’t have to invoke magic or pseudoscience or deceive patients paternalistically in order to maximize these effects; yet that is what Kaptchuk and his fellow travelers are implicitly doing by rebranding CAM as placebo. In the end, all too much of the rebranding of CAM as placebo and the selling of placebos as some sort of powerful “mind-body healing” strikes me as being much like The Secret, in which wishing makes it so."

...


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A fairly thorough, very fair response to yet another attempt to rebrand CAM by distorting what the science says.



January 8, 2012

The Fallacy Of Relying On Anecdotes In Medicine

http://getbetterhealth.com/the-fallacy-of-relying-on-anecdotes-in-medicine/2012.01.06

"...

Gawler decided to embark on an alternative treatment regimen, involving coffee enemas, a vegetarian diet, and meditation. Eventually he was completely cured of his terminal metastatic cancer. He has since become Australia’s most famous cancer survivor, promoting his alternative approach to cancer treatment, has published five books, and now runs the Gawler Foundation.

At least, that is the story he believes. There is one major problem with this medical tale, however – while the original cancer was confirmed by biopsy, the subsequent lesions were not. His oncologist at the time, Dr. John Doyle, assumed the new lesions were metastatic disease and never performed a biopsy. It was highly probable – the timing and the location of the new lumps following a highly aggressive cancer. But even a diagnosis that is 95% likely will be wrong in 1 patient out of 20 – which means a working physician will have patients with the 5% diagnosis about once a week. The standard of practice today would be to do a biopsy to get tissue confirmation of the diagnosis, and rule out the less likely alternatives.

...

Gawler has believed for the last three decades that diet and meditation can cure cancer. He has spent that time writing books and promoting his personal story, convincing many others of his beliefs. While he may mean well, the far better course of action would have been to study the hypotheses that stemmed from his dramatic experience, not to conclude that he must be correct and proceed with premature conviction. That is the difference between a crank and a scientist.

In medicine well-meaning (and not-so-well-meaning, for that matter) cranks can do a lot of harm.
It’s good to see mainstream doctors recognizing the risk and doing something about it."



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A nice illustration of this common fallacy.

January 7, 2012

Why Do We Really Need Clinical Trials?

http://www.sciencebasedmedicine.org/index.php/why-do-we-really-need-clinical-trials/

"A point I make over and over again when talking about new or alternative therapies that are not supported by good clinical trial evidence is that lower-level evidence, such as theoretical justifications, anecdotes, and pre-clinical research like in vitro studies and animal model testing, can only be suggestive, never reliable proof of safety or efficacy. It is necessary to begin evaluating a new therapy that does not yet have clinical evidence to support it by showing a plausible theory for why it might work and then moving on to demonstrate that it actually could work through pre-clinical research, which includes biochemistry, cell culture, and animal models. These sorts of supporting preclinical evidence are what we refer to when we refer to the “prior plausibility” of a clinical study. But this kind of evidence alone is not sufficient to support using the therapy in real patients except under experimental conditions, or when the urgency to intervene is great enough to balance the significant uncertainty about the effects of the intervention.

In support of this conclusion, we can consider the inherent unreliability of individual human judgments and all the many ways in which inadequately controlled research can mislead us. And we can reflect on how promising results in early trials often melt away when better, larger, more rigorous studies are done that better control for bias (the so-called Decline Effect). And it is not at all difficult to compile a large list of examples of the harm inadequately studied medical interventions can cause.

But what I’d like to do here is focus on a particularly good specific example of why thorough clinical trial evaluation of promising ideas is not just a nice extra to confirm what we already believe is true, it is the only way to genuinely know whether our treatments to more good than harm.

...

I think much of the success of the “integrative medicine” meme has been based on the lack of an adequate understanding among health professionals about the serious limitations of low-level evidence. The SELECT illustrates nicely how even a plausible intervention with enough low-level evidence to justify a major clinical trial can prove not only less helpful than originally hoped but even actively harmful. The same principle applies to an even greater degree to less plausible hypotheses. High-quality clinical trials are not simply icing on the cake confirming what we already know, they are the cake without which we know a lot less than we usually think."



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A worthy read, IMO.

January 7, 2012

Indeed, it is.

Sleep disorders are something that should be explored with anyone who is coming in with anxiety symptoms.

On a more behavioral aspect, it's amazing how many kids I have known who struggled with anxiety, and either had it turn around because they chose to get good sleep, or continued to struggle with it, because "everyone else is up late, so I have to be up late, too!"

http://childrenwithanxiety.com/articles-resources/sleep-habits-can-affect-levels-of-stress-and-anxiety-in-children-and-teens

January 7, 2012

Sleep issues need to be the focus of more research.

They may be undermining huge swaths of the population.

Here's another recent study on the matter:

Naps cut anxiety, up problem solving in tots
http://scienceblog.com/51377/naps-cut-anxiety-up-problem-solving-in-tots/

From the article: “Many young children today are not getting enough sleep, and for toddlers, daytime naps are one way of making sure their ‘sleep tanks’ are set to full each day,” she said. “This study shows insufficient sleep in the form of missing a nap taxes the way toddlers express different feelings, and, over time, may shape their developing emotional brains and put them at risk for lifelong, mood-related problems.”

January 3, 2012

Reducing the Risk of Adverse Drug Events

http://www.sciencebasedmedicine.org/index.php/reducing-the-risk-of-adverse-drug-events/#more-18509

"Critics of mainstream medicine often point to the dangers of drugs. I previously wrote about “Death by Medicine,” where I explained the fallacy of fixating on harmful effects of drugs without putting them into perspective with all the good drugs do. Yes, patients have died from severe allergic reactions to penicillin, but penicillin has also saved countless lives.

A recent article in The New England Journal of Medicine looks at emergency hospitalizations for adverse drug events in elderly Americans. It confirms that adverse reactions are a serious problem, but some of its findings are surprising.

...

It is conceivable that the biggest problem drug could entirely drop off the list and 33% of drug-related hospitalizations could be prevented if only doctors managed Coumadin dosing more effectively and if patients complied better with instructions about medication and diet. At my local hospital (Madigan Army Medical Center), all patients on anticoagulation are managed by a Coumadin Clinic run by an experienced clinical pharmacologist using rigorous procedures and guidelines; I don’t have any figures, but I think that approach is much better than having individual doctors manage their own patients.

A pharmacist, Robert Steven Gold, has written a book with specific proposals for reducing medication risks. The title is Are Your Meds Making You Sick? The title led me to expect a typical anti-establishment rant about evil Big Pharma poisons. It is anything but. The format is engaging: it presents a series of mini-mystery case reports and challenges the reader to detect which drug is the culprit.

..."


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It's a short piece with good links to further pieces on this issue. I would recommend checking into those links as well as perusing this short piece. This is information that could make discussion on the health forum far more fruitful, at least in my opinion.

December 22, 2011

What’s All That Other Stuff In My Medicine?

http://sciencebasedpharmacy.wordpress.com/2011/10/13/whats-all-that-other-stuff-in-my-medicine/

"If you read enough supplement advertisements, like I do, you’ll often see the purity of a product is cited as one of its merits. It’s usually some phrase like:

Contains no binders! No fillers! No colours! No excipients! No starch! No gluten! No coatings! No flow agents!

It’s a point of pride for supplement manufacturers to advertise that their product contains nothing but the labelled ingredient. And that’s also seen as an important benefit to many that purchase supplements. The perception from many consumers (based on my personal experience) seems to be that products are inferior if they contain non-drug ingredients. By this measure, drug products are problematic. Pharmaceuticals all contain an array of binders, coatings, supplements and fillers. Even (gasp) artificial ingredients and sweeteners! And they’re often, though not always, disclosed on the package label.

But rather than being a negative feature, these supplementary, non-medicinal ingredients play a critical role in ensuring that drug products are of consistent and reproducible quality. Without them, we’d have products that are potentially unstable, we’d be unclear if they were actually being absorbed, and we wouldn’t know if they actually delivered any active ingredients into the body. In short, we’d be in the same situation we’re currently in with many herbal remedies and other types of supplements.

Standard pharmaceutical products are evaluated in both clinical trials (to measure efficacy) but also more basic tests – such as whether a drug that is ingested is actually absorbed into the bloodstream. A promising drug won’t work if it doesn’t reach the desired site of action. And to do that, we use a variety of tools and processes to ensure that a drug is reliably and predictably absorbed when we use it, whether by ingesting it, rubbing it on our skin, or injecting it. Excipients can be described as any components of a drug product that are not the “API”, the active pharmaceutical ingredient. Excipients serve to keep the API stable, help its absorption, and simplify the manufacturing process.They help ensure that products are consistent – batch to batch and bottle to bottle. Excipients also help improve consumer acceptance and usage.

..."


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An interesting read on something that pops up in conversation around here, now and then.

December 21, 2011

Does Coenzyme Q10 Relieve Statin-Induced Muscle Pain?

http://sciencebasedpharmacy.wordpress.com/2010/02/21/does-coenzyme-q10-relieve-statin-induced-muscle-pain/

"...

Conclusion

Muscle pain during statin treatment is a common problem encountered by patients, and a frequent question posted to pharmacists. The documented benefits of statins on morbidity and mortality suggest that all evidence-based efforts should be made to keep patients on therapy.

Consider this: in moderate to high risk heart patients, for every 1 million patients treated with a statin, 15 cases of the severe adverse effect rhabdomyolysis might occur. However, 30,000 cardiovascular deaths or non-fatal myocardial infarctions would be avoided. That is one case of rhabdomyolysis for every 2000 severe cardiovascular events avoided.[17] In light of this risk- benefit relationship, it’s critical that muscle pain be evaluated by a physicians before statin therapy is discontinued, because the benefits outweigh the risks of treatment.

Unfortunately, there’s little high-quality, persuasive evidence to support the use of CoQ10. This initial data is promising, but larger, better trials are required before using this supplement can be considered to be supported by good science. In light of the risk-benefit ratio, however, in cases where discontinuation of statin therapy is being contemplated, a trial of CoQ10 may be reasonable."


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A fairly thorough summary of the issue, at least at the time it was published. Just FYI, since this topic comes up frequently on the Health forum.

December 19, 2011

PLOS Blogs Book of the Year: Thinking Person’s Guide to Autism

http://blogs.plos.org/neurotribes/2011/12/19/book-of-the-year-thinking-persons-guide-to-autism/

"A sea-change is happening in the world of autism. Just a few years ago, the loudest voices in media coverage of the issue were those of Jenny McCarthy’s “warrior moms,” defending Andrew Wakefield’s now-discredited claim that the combined measles-mumps-rubella vaccine causes autism, while spending hard-earned income on the latest cure for their “vaccine-injured” kids — which could allegedly be found in megadoses of vitamins, chelation therapy to remove heavy metals like mercury from the body, elaborate elimination diets, home hyperbaric chambers and saunas, and untested gray-market drugs.

It’s not hard to understand what motivated these parents: Intense love and concern for their children, along with healthy skepticism of corrupt multinational corporations and government agencies that have proven themselves fully capable of covering up crimes against humanity that resulted in the injury and death of thousands. The mothers and fathers of kids on the spectrum have excellent reasons to distrust the medical establishment — notably its unquestioning acceptance of Bruno Bettelheim’s “refrigerator mother” theory in the 1950s, which cruelly blamed parents for their kids’ developmental disorders, adding shame and stigma to the challenges of raising an autistic child.

...

The book doesn’t make light of the diligent work required to make the world a more comfortable, supportive, and joyful place for atypically developing kids, while helping them cope with the stresses and sensory challenges that are an inevitable part of life on the spectrum. But it also makes clear that one of the toughest things to deal with as a parent is the pervasive view of autism as a tragedy. The deeply networked science-and-tech-literate parents who put the book together have happy children who are respected and treasured for being who they are, rather than pitied as unwitting victims of a Big Pharma conspiracy. (That was cherubic Leo Rosa rocking the iPad in a clip played at Steve Jobs’ last keynote).

...

One of the most progressive aspects of the Thinking Person’s Guide is that it includes a section of essays written by autistic people themselves, which gives it an intimate, insiders’ view of a way of being that is all too often depicted as an impenetrable enigma (represented by the ubiquitous puzzle-piece iconography employed by many fundraising organizations, which many self-advocates have come to detest). Their accounts indicate the pressing need to debunk stereotypes of autistics as either amazing savants or automatons who lack empathy, and to create neurodiversity-friendly workplaces — needs that are not addressed by the usual star-studded “autism awareness” campaigns that raise millions of dollars a year to scan genomes and hunt for new drug targets.

..."



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This is now on my "must read" list. I'll post about it again, once I've had a chance to dig into it.

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