After the last couple of days of depressing posts about the utter failure of the FDA to do its job protecting cancer patients from the likes of Stanislaw burzynski, it’s time to move on. Given how utterly demoralizing it was to see the FDA, in essence, pass the buck when it comes to protecting cancer patients, I thought back to more amusing times. Oddly enough, some of these times involved Burzynski. Specifically, they involved Burzynski’s propagandist Eric Merola, whose spittle-flecked rants never fail to amuse.
For example, a frequent charge made by Burzynski fans like Merola is that we “skeptics” are busily out there “astroturfing”; i.e., that we’re paid by big pharma to go out there and pollute Google search results and, above all, Wikipedia. To Merola, Wikipedia is controlled by a cabal of “skeptics,” who prevent the “truth” from being added to Wikipedia entries about Burzynski. It’s a true case of the “pharma shill gambit.” Of course, Burzynski and his minions aren’t alone in this. Not too long ago, Deepak Chopra himself uncorked an epic whine about those nasty skeptics who supposedly control Wikipedia and keep the “truth” about alternative medicine from finding its way into relevant Wikipedia entries, be they about Deepak Chopra, Rupert Sheldrake (the Wikipedia entry that “inspired” Chopra’s epic rant), “mind-body” medicine, intelligent design creationism, or other quackery and pseudoscience. Indeed, antivaccinationists in particular hate Wikipedia, particularly over its entry on antivaccine patron saint Andrew Wakefield.
Knowing how much cranks try to edit Wikipedia and, for the most part, are thwarted by Wikipedia’s rules, the response by Jimmy Wales, one of the founders of Wikipedia, to a recent Change.org petition. Now, for the most part, I view Change.org petitions as one of the most useless activities known to humankind, with little or no chance of positively effecting policy. However, sometimes there are some amusing petitions that at least provide entertainment value. For example, a few months ago, there was a petition on Change.org from the Association for Comprehensive Energy Psychology, which describes itself as:
Formed in 1999, the Association for Comprehensive Energy Psychology (ACEP) is a US Internal Revenue Service 501(c)(3) non-profit organization and Publicly Supported Foundation of approximately 1,300 licensed mental health professionals and allied health practitioners around the world. ACEP members are dedicated to exploring, developing, researching and applying energy psychology methods to alleviate human suffering, enhance human performance and access human potential. Energy psychology interventions address the various aspects of the human ‘subtle energy system’ including: Energy pathways: meridians and acupoints Energy centers: chakras and vortices Human Energy Field: the human biofield or ‘aura’ ACEP seeks to establish the credibility and efficacy of energy psychology methods through its programs of certification, education, ethics, humanitarian aid and research.
Perusing the ACEP website reveals a cornucopia of quackery. “Energy psychology” is described as a family of “integrative” approaches to psychotherapy and healthcare, based on a whole lot of science-y sounding physics technobabble:
Embracing what modern physicists and ancient wisdom traditions know, energy psychology acknowledges the role of bio-energetic systems within and between people as important determinants of health and well-being, illness and pathology.
Energy psychology theory suggests that psychological problems are a reflection of disturbed bio-energetic patterns within the mind-body system—a system that involves complex communication between a person’s neurobiology and their cognitive-behavioral-emotional patterns.
Energy psychology practitioners combine cognitive interventions (including focused awareness and mindfulness, imaginal exposure to traumatic memories and cognitive reframing) simultaneously with the stimulation of one or more of the human bio-energy systems such as meridians, chakras and biofields.
This powerful combination facilitates rapid positive change and optimal psychotherapeutic outcomes and is aligned with the latest findings from neuroscience and traumatology. With over 50 research studies to date, EP meets the criteria to be designated as evidence-based treatment.
Let me tell you, this website is such a “target-rich” environment that I might have to do another post on it one day. The research section in which various quackademic research papers are listed by “rigor” according to the evidence-based medicine (EBM) hierarchy of evidence is really a hoot. Most of the randomized controlled trials are trials of Emotional Freedom Technique (EFT). EFT is a variant of “thought field therapy,” a therapy in which the therapist uses sequences of finger taps on “acupressure points” (a.k.a. acupuncture meridians) while visualizing a distressing situation, the idea being that this will somehow “release the body’s energy flow.”
Such is the group that posted a Change.org petition, and, not surprisingly, its petition reads thusly:
Wikipedia is widely used and trusted. Unfortunately, much of the information related to holistic approaches to healing is biased, misleading, out-of-date, or just plain wrong. For five years, repeated efforts to correct this misinformation have been blocked and the Wikipedia organization has not addressed these issues. As a result, people who are interested in the benefits of Energy Medicine, Energy Psychology, and specific approaches such as the Emotional Freedom Techniques, Thought Field Therapy and the Tapas Acupressure Technique, turn to your pages, trust what they read, and do not pursue getting help from these approaches which research has, in fact, proven to be of great benefit to many. This has serious implications, as people continue to suffer with physical and emotional problems that might well be alleviated by these approaches.
Larry Sanger, co-founder of Wikipedia, left the organization due to concerns about its integrity. He stated: “In some fields and some topics, there are groups who ‘squat’ on articles and insist on making them reflect their own specific biases. There is no credible mechanism to approve versions of articles.”
This is exactly the case with the Wikipedia pages for Energy Psychology, Energy Medicine, acupuncture, and other forms of complementary/alternative medicine (CAM), which are currently skewed to a negative, unscientific view of these approaches despite numerous rigorous studies in recent years demonstrating their effectiveness. These pages are controlled by a few self-appointed “skeptics” who serve as de facto censors for Wikipedia. They clothe their objections in the language of the narrowest possible understanding of science in order to inhibit open discussion of innovation in health care. As gatekeepers for the status quo, they refuse discourse with leading edge research scientists and clinicians or, for that matter, anyone with a different point of view. Fair-minded referees should be given the responsibility of monitoring these important areas.
See what I mean about the similarities of cranks when it comes to their attitudes about Wikipedia? This sounds very much like Deepak Chopra’s woo-ful whine about Wikipedia, John Stone’s unhinged rants about Wikipedia, and, of course, Eric Merola’s claims in his last movie about Stanislaw Burzynski that there is a shadowy cabal of evil skeptics—are there any other kind if you’re a woo-meister?—playing gatekeeper at Wikipedia, allowing no hint of anything favorable to alternative medicine and pseudoscience to find its way into Wikipedia. Of course, reasonable people would in general find this to be a good thing. We don’t want pseudoscience and quackery on Wikipedia. However, cranks, knowing how frequently Wikipedia is the first resource to which people turn for information, get really cheesed when articles on “energy healing,’ acupuncture, Stanislaw Burzynski, vaccines, autism, and the like are strictly science-based.
That’s what makes Jimmy Wales’ response to this petition, posted on March 23, to this petition, such an epic pwnage of ACEP:
No, you have to be kidding me. Every single person who signed this petition needs to go back to check their premises and think harder about what it means to be honest, factual, truthful.
Wikipedia’s policies around this kind of thing are exactly spot-on and correct. If you can get your work published in respectable scientific journals – that is to say, if you can produce evidence through replicable scientific experiments, then Wikipedia will cover it appropriately.
What we won’t do is pretend that the work of lunatic charlatans is the equivalent of “true scientific discourse”. It isn’t.
The dude sounds like Orac. I like it—to a point.
Here’s the problem. While the attitude is awesome, the assumption is on tenuous ground. Thanks to the infiltration of quackademic medicine into medical academia over the last couple of decades, using publications in respectable scientific journals as the arbiters of what is reliable science and what is not is no longer a viable strategy. If you don’t believe me, check out this post about “energy chelation,” or this post about how naturopathy and functional medicine have found their way into the University of Kansas, or this post about how anthroposophic medicine has found its way into my alma mater, the University of Michigan. I could list literally dozens of papers that claim to provide evidence for all manner of quackery. Sifting the wheat from the chaff is a daunting task.
None of this, of course, argues that the sort of quackery advocated by ACEP has any scientific validity whatsoever. It should simply serve as a caution to Mr. Wales that determining what is and isn’t valid science is not as simple as that, at least in medicine. The scientific basis of medicine has been so thoroughly contaminated with pseudoscience that Wikipedia rules alone might not be enough to keep the “work of lunatic charlatans” out of Wikipedia. Constant vigilance is needed. That’s why science-based people should consider becoming Wikipedia editors. I’ve thought of doing so myself, but I’ve decided that I’m more suited to what I do now and can, now that I’ve become better known, do more good where I am. In the meantime, people will always be needed to man the barricades against pseudoscience, wherever those barricades might be.
53 replies on “An excellent response to complaints about medical topics on Wikipedia”
Oh I bet it has proven to be of great benefit to many. Many providers of Energy Psychology that is, fleecing the marks.
Also, I think that Shadowy Cabal of Sceptics is pretty decent conspiratorial body to rule the world. I still have soft spot for Illuminati and Knights Templat, immortal classics, but if SCoS can get some nice robes and maybe backstory connecting them to scientist throught history, it could be up there. I recommend retroactively announcing Galileo was a member. The reverse version of gambit, telling he was shunned cause he outed himself as shadowy sceptic.
@ The Smith of Lie
The poor guys sure became a template for conspiracy mongering. It started with French king Philippe and continued until today’s Assassin’s Creed video games.
Already done in the video game Lionheart. With Knights Templar (or template) and plenty of occasions for energy medicine to boot.
Eh, it was not a game, it was a documentary!
Ah, so Orac *is* MastCell after all!!
“ancient wisdom traditions know…” Ah, if anyone knows about germ theory, or modern scientific theories, it was the “ancient’s.” That sentence should have ended with “…..nothing.” And if I approached my patients with “Energy” psychology techniques, they would tell me to stuff it, and rightly so. Our patient’s are surrounded by SBM, and “security checks” to ensure none of this woo gets through because for my patient population it could end in death.
“ancient wisdom traditions know…” Ah, if anyone knows about germ theory, or modern scientific theories, it was the “ancient’s.” That sentence should have ended with “…..nothing.” And if I approached my patients with “Energy” psychology techniques, they would tell me to stuff it, and rightly so. Our patient’s are surrounded by SBM, and “security checks” to ensure none of this woo gets through because for my patient population it could end in death.
Wow! I felt so strongly I posted it twice! Oops!
This powerful combination facilitates rapid positive change and optimal psychotherapeutic outcomes and is aligned with the latest findings from neuroscience and traumatology.
That sentence sounds like something a Big Pharma marketing sooper genius might have written.
ACEP seeks to establish the credibility and efficacy of energy psychology methods
There is a way to do this: publish studies that actually demonstrate the credibility and efficacy of a given method. Of course, that assumes that proponents of that method can actually devise a credible study and still have it show a result. Which may not be a valid assumption for ACEP. Sure, they claim to have studies–but my guess is that they either (1) are not credible or (2) show no significant improvement over placebos.
RE wiki-p and “having an effect” as a sceptic
Interestingly, at least one charlatan has sued wiki
for 100 million USD and failed miserably ( see Quackwatch/ new additions/ credential watch).
I may have caused a ripple amongst the faithful in woo-ville:
as you know, I’ve written often about estates owned by various woo-meisters which are easily viewable via the net. One of these creatures had to respond to his audience’s questions- which came pouring in by e-mail to his enabler- about his property recently being put up for sale-
although he didn’t apologise for the incredible price and vast acreage, he sniveled that he’s not selling “his home”- only the parts of he property that he was trying to develop as a “healing resort” which the town fathers/mothers have opposed for years. Fortunately for his faithful, he’s creating another retreat/ village/ healing centre in a more woo-friendly, even more libertarian area ( more on that later).
I’d like to think that yours truly, your humble servant, moi, had something to do with getting his followers to question their master but I don’t know that that is true. Orac and his loyal minions have created a stir because they are frequently a topic @ AoA, PRN and other reeking dens of rapidly decaying iniquity.
The more time and ink ( electrons?) they have to waste ‘explaining us away,’ the less time they have to think up ways to trick people out of their hard-earned money, pull the wool over their unsuspecting eyes, bask in their adulation and parody science.
he sniveled that he’s not selling “his home”- only the parts of he property that he was trying to develop as a “healing resort” which the town fathers/mothers have opposed for years
Obviously the property in question is not in Texas (which doesn’t have zoning ordinances, so nobody would be able to stop him from developing his “healing resort”). Anywhere else, he’d probably need to get permission from the zoning board, which may or may not be favorably inclined, and the neighbors (who are probably similarly wealthy, and unlikely to be favorably inclined) would have a chance to speak out on the issue.
But it’s good that some of these supplement sellers have to explain why what’s being supplemented is their bank accounts.
But, Orac, there is a conspiracy. I have proof.
Wales’ requirements are on much stronger ground if instead of demanding that energy medicine publish convincing evidence in respectable medical journals he insists that energy medicine publish convincing evidence in respected physics journals. After all, isn’t this the area which should and would be foaming in furious excitement over the discovery of “the human ‘subtle energy system’ including: Energy pathways: meridians and acupoints Energy centers: chakras and vortices Human Energy Field: the human biofield or ‘aura’? ”
Forget medicine: due to the nature of these claims, they need to be vetted by physicists.
My understanding is that physics journals are more … rigorous. The statistical criteria is higher and the studies easier to control. The energy healers are not going to be dealing with “shruggies,” or a culture which believes that ancient wisdom is being confirmed by science, or a belief in ‘trying it for yourself.’
Good luck to them. They’ll need it.
[…] You can read the entire text, and some more commentary on the issue, at Respectful Insolence. […]
Re: studies proving energy medicine:
I keep thinking about things like apsirin, ibuprofen and other NSAIDS, statins for lowering cholesterol, enbrel for rheumatoid arthritis, etc.
No one really disputes they are effective as claimed, since it is a trivial matter to provide evidence in the form of high quality studies demonstrating efficiacy.
Surely if energy therapies–or homeopathy, acupuncture, reflexology, etc., worked not only as well but as their proponents claimed even better than science based medicine it would be a trivial exercise to generate a similar body of evidence demonstrating that fact.
But the best any proponent of these alternatives can seem to find are personal testimonials, anecdotal accounts, underpowered low quality (and frequently unblinded and improperly controlled) “trials” to msupport their claims.
There must be a reason for that: wonder what it is…?
Love that suggestion, Sastra. I can see them getting, um, “quantum” results.
Given the way Wikipedia functions and it’s purpose as an encyclopedia, that tenuous ground is really their only choice. If the front lines of public journals and academia continue to crumble there is little that wikipedia is going to be able to do to fill in the void. While I agree that more skeptically minded people editing is essential, it will matter little if the scientific literature itself becomes unreliable. That side of the problem is going to have to be fixed from within the establishment.
@ Eric Lund:
The property in question is located in Florida and the one that which will replace it- as the focus of woo- is in the last phases of development in Texas- I have reason to believe near Austin or Dallas.
Sastra @11 — In some kinds of experiments, you want a physicist working in collaboration with an excellent stage magician. Physicists tend to think experiments are on the up-and-up, and can be pretty easy marks as a result.
Sastra @11: I agree with palindrom here. Referees of an experimental physics paper presume that the authors have performed the experiment as described in the paper and obtained the result reported. A charlatan who knows enough physics to fake an experiment, particularly if he can come up with a halfway plausible physical explanation for the result, has a good chance of getting past the referees. That’s how Jan-Hendrik Schön got away with what he did for so long. And I have observed some physicists who have succumbed to the charms of alt-med.
If you are assuming that people conducting such studies are likely to lapse into Chopra-woo or other similar traps, I hope you are correct. But I don’t want to count on that.
@palindrome & Eric Lund:
Good points. I guess I was assuming an actual physics paper — with math — but you’re right. It could be a ‘case study’ in HEF spoon bending in which case the fact that the observer is a physicist means little or nothing.
Semmelweiz: doctors should wash their hands between patients
Orac: Hogwash! Handwashing is not the ‘standard of care’
semmelweiz: I have saved hundreds of lives by washing my hands.
Orac: Unscientific ancedotal evidence from an obvious Quack! Where is your randomised, double blind clinical trial complete with scientific peer reviewed papers?
@Oiaa 30 second duckduckgo done by a lay person – http://www.ajicjournal.org/article/S0196-6553(07)00595-0/abstract
ps- I think we know who is the real ass.
Mr. Ass, that’s not exactly how it went.
[…] Orac at Respectful Insolence calls it “epic pwnage.” […]
Well, some of y’all were just wondering who was going to fulfill the role of chewtoy following the exit of Gerg…
OIAA@20: Better trolls, please. Pro tip: Using a nym consisting of an ad hominem (or ad computeram, in this case) attack on the blog author makes it a little too obvious what you are doing.
Orac,
“…using publications in respectable scientific journals as the arbiters of what is reliable science and what is not is no longer a viable strategy.”
“Sifting the wheat from the chaff is a daunting task.”
You are singing my song.
Interesting thing about about Wikipedia. I remember years ago it was a grave sin to site them as a source in a college paper. Now, back in school, I see that colleges link to them.
You can help save poor Liza.
http://www.anh-usa.org/activism-could-save-liza-life/
GODDAMITT!
Do you think that business interests have polluted what gets published as well as woo masters? I have no illusions of grand conspiracies, yet I know how business operates. Each greedy individual adds up corporately to the genesis of many nasty things. I don’t discount the egos of charlatans, but there are only so many of them in the world. However, where money is involved, there are multitudes more willing to lie to get more.
some of y’all were just wondering who was going to fulfill the role of chewtoy
OIAA is not really projecting a sense of “good-faith argument in the hope of changing minds or being changed”. Of course he /she doesn’t help by running away on one thread in order to spam the same non-sequiturs on others.
“While I agree that more skeptically minded people editing is essential, it will matter little if the scientific literature itself becomes unreliable. That side of the problem is going to have to be fixed from within the establishment.”
I’ve got the Wikipedia end with Guerrilla Skepticism on Wikipedia. Orac and others will have to work on the academic end.
All hope is not lost… “Thanks to the infiltration of quackademic medicine into medical academia over the last couple of decades, using publications in respectable scientific journals as the arbiters of what is reliable science and what is not is no longer a viable strategy. ” if something like this is published in a notable journal, then we may have to add it to the WP page. BUT we also would add the add the counter point from scientists as well. It is a consensus from the scientific community that rules, not just a out-lining article in a notable journal.
It still isn’t that easy to get the woo on a WP article. Just takes more editors. I do have a bunch of scientists working on the GSoW team, so don’t stress over this. We need you right were you are Orac.
@Susan Gerbic
You must be doing something right if these are your critics http://www.astrologer.com/tests/wp.htm
Published by whom? Journals aren’t some sort of monolith.
No, but greed seems to be.
This response does nothing to clarify for me the point that you’re attempting to advance.
@Narad
Agreed. It was my frustration about this:
“… using publications in respectable scientific journals as the arbiters of what is reliable science and what is not is no longer a viable strategy.”
My point is that isn’t any one journal. It is a behavior for profit that I am calling out. Why would there be an infiltration of quackademic medicine into medical academia? Is it that those that review and publish research forgot their scientific thinking or are they willing ignoring it?
I don’t think it is news that business try to maximize profits. I just wonder if it is now supplanting reason in respectable scientific journals. Or something else? I am open to being wrong.
Someone tell Larry Sanger about this *chuckles*
Alties are the only thing that keeps citizendium alive.
Hail Draconis!
[…] Orac at Respectful Insolence calls it “epic pwnage.” […]
While wooists are griping that Wikipedia is inhospitable to their fact-free edits, they should check out what their supposed Wikipedia alternative is doing.
Wiki4CAM has the following “note for skeptics” posted on their site:
“We request the non-believers in CAM to please respect our individuality and give us the space to document each alternative medicine system in detail and with peace.”
“If you want to discuss the scientific implausibility of some CAM practice, there are many many other places (discussion forums, mailing lists, wikis) on the Internet. You can share your point of view there.”
http://www.wiki4cam.org/wiki/A_note_for_skeptics
In other words, good luck trying to correct bad information on this site* – you’re not welcome.
*not that there appears to be much posted there in the first place.
Wikipedia regular here. It’s not as bad as that – WikiProject Medicine has very stringent sourcing rules. While these are just guidelines to the application of the actual sourcing rules, said guidelines are generally accepted by the editing community as the way it should be done on any medical topic – which includes any medical claim in any topic. It’s heartwarming to see someone sweep through woo-laden reference lists with this particular axe.
Here’s the problem I’m talking about:
https://www.respectfulinsolence.com/2011/08/19/quackademic-medicine-invades-cancer/
This article appeared in the official journal of the American Cancer Society, a journal that is well-respected and known for publishing yearly cancer statistics in the US every January.
I would argue that it’s not as easy as implied in the article.
In my limited experience, I’m not so sure that Wikipedia is as unfriendly to quackery and pseudoscience as many believe. Even when there is good published evidence in respectable journals, and a clear scientific consensus on a given topic, this will receive a few short sentences, followed by several paragraphs devoted to various fringe viewpoints. And even then it’s a lucky thing if the good evidence is even summarized correctly (this at least is often more a matter of incompetence than malice).
When attempts are made to pare back the whackadoodle claims, they get spun off into a separate “controversies” article, which becomes an excuse to ignore their rules regarding giving “due weight” to sources.
While I agree that in theory Wikipedia has some good rules regarding verifiability and citing of sources (and its MedRS is a good standard), in practice what you get is a situation where people find ways around the rules and attempt to use it as a soapbox for various ideological agendas. Perhaps this is more noticeable in Psychiatry articles than those for other medical specialties, but in my experience Wikipedia definitely has a problem with CAM and related fringe views.
Dangerous Bacon:- I was shocked to have a friend get very offended when I questioned her “beliefs”. She accused me of being too judgmental.
It’s really amazing to talk to the people who believe in woo http://boingboing.net/2014/03/25/oh-no-ross-and-carrie-podcast.html
@Mark Thorson: why would we want to support a charlatan whose greed has impoverished many families? Why won’t he publish his results? The internet is a big place. Why won’t Big Pharma just take over and patent his antineoplastins now that his patents have expired? If they are so curative, they’d make millions! Do you honestly think Big Pharma is against making millions?
And why is Wikipedia’s article on him so attacked by true believers?
One of my experiences as a wikipedia editor was reverting a article dealing with vaccines by a persistent vandal. The vandal kept posting stuff that stated that there was proof that vaccines caused autism, then placed a link to a no-name website that was full of the usual altie nonsense.
As I kept reverting his vandalism, he started to make threats against me, reporting me more than once for “unfair deletions” and vandalism against him. He also threatened to sue me and wikipedia in general. I found it pretty humorous, and the mods soon banned the individual, although he/she/it still whined about my supposed “unfairness” and “bias” against his/her/its postings.
The point is, wikipedia, for all of its shortcomings and flaws, still has a good system to check on articles as long as the rules are followed and that the mods follow them, although the system can be easily abused, as Hyperion noted.
Not all journals (or publishers) are for-profit enterprises or have the same revenue structure. The society journals portfolio that I have the longest experience with (in the physical sciences, mind you) was strictly on a fee-for-service basis; the journal was financed by very modest page charges, similarly modest library subscription income (with only a 12 month embargo before free access and no restrictions on posting preprints), and funds from the society. The publisher, which was also a nonprofit, certainly generated excess revenue; this was mostly squandered on upper management and propping up another underperforming division.
So, sure, the largest medical nonprofits operate in the black, but I don’t really see publishing crappy papers as being much of a driver of revenue.
I imagine it depends quite a bit on how reviewing is managed. If you have an “assistant” editor (the terminology varies) who is sympathetic to this sort of stuff – meaning, in all likelihood, that he or she is also publishing the same thing – then more of it is going to appear in print.
“Here’s the problem I’m talking about:…”
Orac, thanks again for raising this topic. To me, it isn’t about being paranoid of what you read in reputable journals; it is merely about being vigilant.
Appreciate everyone comments on Wikipedia and Narad for the info on how journals are managed.
Someone referenced this site http://retractionwatch.com/ in the comments of one of the other blogs I follow. I am not sure if it was mentioned here before, but it looks to be a good source of information.
Mike @44
Oh No Ross and Carrie is one of my favorite podcasts. Those two aren’t afraid to take risks in the pursuit of their investigations and are always funny.
Oh, yes! The “Oh No Ross and Carrie” is well worth listening to. They usually post a podcast once a month, but this March they did two. Not only was it a promotion for the http://maximumfun.org/ podcast channel, but also because they had lots of interesting material.
[…] An excellent response to complaints about medical topics on Wikipedia – Respectful Insolence […]
Is anyone familiar with and have an opinion on C. Michael Gibson MD and his WikiDocs site? He also started a site for dissemination of Clinical trial information.
Thanks!
[…] Further reading: Nuerologica, Respectful Insolence […]