Grand Rounds Vol 8 nr 5: Data, Information & Communication

26 10 2011

Welcome to the Grand Rounds, the weekly summary of the best health blog posts on the Internet. I am pleased to host the Grand Rounds for the second time. The first time, 2 years ago, was theme-less, but during the round we took a trip around the library. Because, for those who don’t know me, after years of biomedical research I became a medical librarian. This also explains my choice for the current theme:

DATA, INFORMATION & COMMUNICATION

The theme is meant to be broad. According to Wikipedia:

Information in its most restricted technical sense is a message (utterance or expression) or collection of messages that consists of an ordered sequence of symbols, or it is the meaning that can be interpreted from such a message or collection of messages. Information can be recorded or transmitted (…) as signs, or conveyed as signals by waves. Information is any kind of event that affects the state of a dynamic system. (…) Moreover, the concept of information is closely related to notions of … communication.. dataknowledge, meaning, .. perception. .. and especially entropy.

I am pleased that there were plenty submissions on the topic. I love the creative way the bloggers used the theme “information”. In line with the theme the information will be brought to you according to the Rule of Entropy, seemingly chaotic. Still all information is meaningful and often a pleasure to read. Please Enjoy!

INDIA, WISDOM & IMAGESIMAGING

From: IBN-live (India): Book News: “Kama Sutra is about sexual & social relations”

IMAGES are a great way to tell information, especially if you don’t understand the language. The picture above is from the Kama Sutra, an ancient Indian Hindu work on human sexual behavior in Sanskrit literature. Did you know the original Kama Sutra is not all about sex and does not have any pictures? Only words, no graphic. And sadly, as a text, it isn’t widely read.

Yes, we start our trip where it ended last week, in INDIA

Our host of last week, Sumer Sethi of Sumer’s Radiology Site, shows very clear (MRI)-images of partially recanalized internal jugular vein thrombosis, in a patient with MS, possibly supporting the theory that MS is a result of chronic venous insufficiency. As readers of this blog know Laika is not impressed by n=1 data, although it may be a good starting point. However, Sumer underpins this link with a paper in J Neurol Neurosurg Psychiatry 2009. Still, a quick look at the citing papers shows many new studies don’t confirm the association of MS with cerebrospinal venous insufficiency…

Another great radiologist, also from India, isVijay Sadasivam (@scanman). No recent posts, but at Scanman’s Casebook you will find an archive of interesting radiological cases, in the form of case reports.

The quite tech savvy surgeon Dr. Dheeraj (aka Techknowdoc) explores the alternatives to the invasive and uncomfortable colonoscopy procedure at Techknowdoc’s Surgical Adventures! This post is a short illustrated guide, visualizing the differences between regular colonoscopy, capsule endoscopy and Virtual Colonoscopy. It is not hard to imagine which approach people would prefer.

Pranab (aka Skepticdoctor) makes an urgent appeal to fellow Indians to help Amit Gupta and other Indian people to get a bone marrow transplant when they need one. Amit has Acute Leukemia, but South Asians are very poorly represented in bone marrow registries, so his odds of getting a match off the registries in the US are slim. The chances are even worse for the less well-off Indians. Read at Scepticemia how you can help. For Amit, for India, for you, or worse, someone you love more than yourself….

Dr. Jen Gunter ridicules Cosmo’s to-go version of the Kama Sutra in a short series! For the “sex positions of the days” are just an offensive alliteration and woeful ignorance of female anatomy… Looking up medical information is the 3rd most common on-line activity. While there are good sites with great information that can help people be empowered about their health, there are also tons of terrible sites marred by bias and rife with the stench of snake oil. In an other post at Dr. Jen Gunter (wielding the lasso of truth) Jen reveals 10 red flags that will help you separate the wisdom from the woo.

THE POWER OF WORDS, MUSIC AND VISUAL ARTS

http://www.flickr.com/photos/isfullofcrap/5147100521/

Yes, a picture is worth a thousand words. And this is also true for other audiovisual arts. 

Yet, some Medical Bloggers master the art of storytelling, they convey of events in words, images and sounds. And here, words have the same powerful strength. Often these posts of these storytellers are about communication and they know how to communicate that.

One of the master storytellers is Bongi, a general surgeon from South Africa. He submitted the post die taal (that language), which is clearly about communication but in a language (“Afrikaans”), that I can understand, but many of you don’t. Therefore I choose another post at Other Things Amanzi, which is also about communication: “It’s all in the detail”

Another great storyteller, and the winner of the best literary medical blog category of Medgadget contest in 2009 and 2010 is StorytellERdoc. In the beautiful post The Reminder – EKG #6, he tells us how the 6th abnormal EKG in a presentation of one of the residents, brought back memories to the technician who made that EKG: “There is something more important about this EKG than it’s tracing, I began” ….

Robbo (Andrew Roberts) is a pharmacist from one of the most remote parts of Australia working full time in Aboriginal Health. His blog BitingTheDust often covers topics like aboriginal art and pharmacy. There is also a category “information-resources”. His latest post in this category explains how condoms are made and how they work. A video goes with it.

Øystein of  The Sterile Eye (Life, death and surgery through a lens) uses photos throughout his blog. His latest post is about a brochure “LEICA – Fotografie in der Medizin” (Photography in Medicine) that was published by Leitz in 1961.

Another blogger, unique in its kind, “raps” his stories. Yes I’m talking about Zubin, better known as ZDoggMD. Watch how he and his mates colleagues rap “Doctors Today!” where he “informs” folks of what it’s like to actually practice primary care medicine on the front lines. Want to know more about this medical rapper, then listen to this radio interview with a med-student run radio (RadioRounds). It’s about using video to “inform” patients and healthcare providers about health-related issues in a humorous way.

Movies are also a good way to “tell a story” and pass information. Ramona Bates reviews the Lifetime’s Movie “Five” at her blog Suture for a Living. Five is an anthology of five short very emotional (but not sentimental) films exploring the impact of breast cancer on people’s lives.

We have had pictures, music, videos and movies as data carriers. But here is a post that is based on the good old book. Dr. Deborah Serani (who has a blog of her own: Dr. Deb: Psychological Perspectives) submits a review from PsychCentral about her new book “Living with Depression.” My first intuitive response: how can a psychologist or psychoanalyst write about “living with“. But it seems that Deborah Serani has faced a lifelong struggle with depression herself. This memoir/self help book seems a great resource for anyone in the health field looking for information about mood disorders, treatments and recommendations. The review makes me want to read this book.

SOCIAL MEDIA & MOBILE APPS

http://www.flickr.com/photos/verbeeldingskr8/4507350257/

What about social media as a tool for medical communication and a source of information?

At Diabetes Mine Allison B. and Amy Tenderich review numerous new mobile apps for managing diabetes. Their reviews “Diabetes? There’s An App For That” and “Glooko: iPhone Diabetes Logging Made Super-Easy” may help to choose diabetes patients among the bevvy of diabetes apps.

Twitter is seen as offering more noise than signal, but there’s valid medical data that can be uncovered. Ryan DuBosar at the ACP internist blog highlights how a researcher uses Twitter to track attitudes about vaccination and how they correlate with vaccination rates. The study adds to a growing body of evidence that social networking can be used to track diseases and other natural disasters that affect public health.

Hot from the press, I can’t resist to include a post from the web 2.0 pioneer Dr. Ves at CasesBlog. Ves Dimov usually writes many short posts, but today he explains Social media in Medicine in depth and guides you “How to be a Twitter superstar and help your patients and your practice”. According to his interesting concept two Cycles, the cycle of Patient Education and the Cycle of Online Information and Physician Education, work together as two interlocking cogwheels.

Mayo Clinic started using social media for communication with patients well before all the recent hype and it organized tweetcamps back in 2009. David Harlow made the pilgrimage to Rochester, MN and spoke at the Mayo Clinic Center for Social Media’s Health Care Social Media Summit last week. According to David “A ton of information was presented, through traditional channels and through some multimedia demos as well”. He shares conference highlights in this post at HealthBlawg, like “It is impossible to transplant a successful program from one location to another without taking into account myriad local conditions”. And “health care providers will have to do more with less”. Therefore e-Patient Dave suggests in his closing keynote to “Let Patients Help”.

Nicholas Fogelson of Academic OB/GYN notes that an operating room without incentives is very expensive. He proposes to install a cheap digital toteboard in every operating room in the USA, that would read how many dollars have been spent on that case at that moment. The idea is that surgeons who know exactly what they are spending, would compete to spend less wherever they could.

According to Bryan Vartabedian the social and technological innovations cause doctors to slowly change from analog physicians to digital physicians. He mentions 6 differences between these doctors. The first is that the information consumption of the digital physician is web-based, while the analog doctor consumes information through paper books and journals, often saying curious things like, “I like the smell of paper” or “I’ve gotta be able to hold it.” By the way, Bryan’s blog 33 Charts is all about social media and medicine.

Blogging doctors are digital doctors per definition, but that doesn’t mean they don’t want to discuss things and see each other in real life. Dr. Val of Better Health and cofounder of this Grand Rounds announces a blog conference in Los Angeles, the Blog World Expo, on November 4th, 2011. Her talk is about “physicians engaging online in social health”, but she is actually hoping that many members of the medical blogging community will be out there IRL! At her blog you can get discount tickets.

The online presence of doctors at social media places can have serious drawbacks. The post of Anne Marie Cunningham about derogatory and cynical humour as displayed by medical personnel at Twitter and Facebook has made it to the Daily Telegraph, other UK newspaper, and to my blog…. This post at Wishful thinking in medical education is a must read for healthcare providers embracing social media.

Many physicians have an online presence, but do they really use social media for decision making, wonders Chris Nickson. From his post and the ensuing reactions at Life in the Fast Lane it appears that tools like Twitter and the comments sections on blogs enable a constant, ongoing dialogue with emergency physicians and critical care experts around the world regarding puzzling clinical issues. Rarely, however, there is a direct ‘tweet’ for clinical help. Rather Twitter contributes to the serendipitously finding of relevant and significant information.

Perhaps direct clinical questions are not asked because Twitter (and Facebook to some extent) are open social media. Bertalan Mesko of ScienceRoll mentions that some French doctors actually perform case presentations on Google+, taking advantage of the very simple privacy settings of Google+. They upload information about the case, discuss it with other peers and get to a final diagnosis.

E-Patient Dave announced a seven hour event about information transfer during transitions of care. This event was webcasted, tweeted and discussed on Google+. (also see Brian Ahier’s post about it on Government Health IT). Dave gives some examples that highlight that without reliable information transition, the care transition can become dangerous. Yes, good IT can help.

DATA, DATABASES, OPEN ACCESS, EBM

http://www.flickr.com/photos/verbeeldingskr8/4029292954/

We now arrive at a clinical librarian topic, medical information via databases, journals and the role of EBM.

The first post bridges this and the previous topic. Jon Brassey is co-founder of  the TRIP-database, a clinical search tool designed to rapidly identify the highest quality clinical evidence for clinical practice. At his blog Liberating the Literature he expresses his view that search is -at best- a partial solution. He is passionate about answering clinician’s questions and would rather see an answer machine than a search engine. Jon is very tempted to allow users to upload their own Q&As, thereby creating an open repository of clinical Q&As. I am more skeptical, because this kind of EBM sharing might be at the expense of the quality of evidence.

What do you think? Can social media and EBM reinforce each other or not? Please tweet your ideas to Anabel Bentley (@doctorblogs at Twitter) who is giving a talk at Evidence 2011 (#ev2011) tomorrow on social media & EBM and asks for your input. You might also want to read my older post about The Web 2.0-EBM Medicine split.

Dean Giustini reviews PubMed Health at The Search Principle Blog. Dean describes PubMed Health as follows. It is as a consumer version of PubMed – a metasearch tool that gathers evidence from Cochrane Collaboration, Nice and other EBM sources to see clinical studies and “what works” in human health. One major benefit of PubMed Health is that any search performed on PubMed Health also runs in PubMed.” Sounds like worth trying.

The invitation to join the editorial board of a relatively new online, open access journal, without receiving any compensation triggered Skeptic Scalpel to ponder about the tangible benefits of open access publishers (coined as “predatory open access” by a commenter) and about how many journals are really needed? Who has the time or interest to read 25 journals on a relatively specialized topic? And what about the quality of the articles in all these journals?

Indeed as The Krafty Librarian explains  the “good guys” (open access) are making just as much profit as the “bad guys.”  They both are for profit. Open Access is not the panacea that many think it is.

Tasha Stanton of Body in Mind asks the intriguing question what to do if systematic reviews on the same topic don’t all give us the same conclusions, whereas you would expect they would collate the same evidence. Tasha finds this disconcerting as for some conditions this could take ages before we could ‘trust’ the evidence. In the example discussed here an Umbrella review was helpful in assessing the evidence. Also the quality of systematic reviews is improving.

SCREENING & DIAGNOSIS. BALANCING BENEFITS & HARMS. 

From: http://www.naturalnews.com/025768_radiation_cancer_mammograms.html as seen at Science Based Medicine

Many people think screening is always a good thing and will prevent or cure a disease. But not every test is a good test and often there are both harms and benefits. It is difficult for patients to understand the true value of tests. 

Margaret Polaneczky, MD was touched by a beautiful essay in the NY Times written by a mother of a child born with Tay Sachs disease. While the mother in her loved the essay, the doctor in her cringed, because a single paragraph about the mother’s experience with prenatal screening had the potential to misinform and even frighten readers. Margaret writes a bit of a primer on Tay Sachs screening at the Blog That Ate Manhattan, mainly to set realistic expectations about what prenatal testing can and cannot accomplish.

David Williams at the Health Business Blog reasons that the US Preventive Services Task Force (USPTF) recommendations against routine use of the PSA blood test in healthy men should not have been delayed because of the the firestorm of controversy created by the 2009 screening mammography guidelines… Because uh-oh well, PSA testing is different (and David is right)…  It’s all about what kind of info we can expect from screening and where it leads us.

This month is breast cancer awareness month, meant to highlight issues of breast cancer and try to call attention to new discoveries about breast cancer. Personally I have mixed feelings about the pink ribbon exploitation of this month”, but David Gorky at Science Based Medicine points at a worse misuse: quacks seize the opportunity to spread their message against science-based modalities for the detection and treatment of breast cancer and to promote their “alternative” methods. (see Fig. above).

BIOMEDICINE, BRAINS AND THE PROCESSING OF INFORMATION

http://www.flickr.com/photos/caseorganic/3675792814/ [CC]

Dr Shock MD PhD reviews a Dutch trial that shows that availability bias contributes to diagnostic errors made by physicians. Availability bias means that a disease comes more easily to the mind of a doctor who diagnoses this disease more often. This study also suggests that analytical or reflective reasoning may help to counteract this bias.

In an intriguing post counseling psychologist Will Meek, PhD covers some of the recent research on two information processing systems as identified by Daniel Kahneman: Intuition and Reasoning. A simple experiment confirms (in my case) that we use intuition for most of the day, and occasionally use reasoning to answer more complex problems. Some people may also frame this as “head vs heart”. Both systems have their pros and cons and both are needed to make good decisions. Otherwise common problems can arise.

David Bradley of ScienceBase discusses recent research by Gallant and colleagues who were able to reconstruct a video image presented to a subject in a functional MRI machine. David dreams of uploading our dreams to Youtube and of developing a mind-machine interface to allow people with severe disabilities to communicate their thoughts and control a computer or equipment. But David is more of a scientist than a dreamer and he interviews Gallant to find out more about the validity of the technique.

Computational Biologist Walter Jessen highlights “National Biomedical Research Day” at Highlight HEALTH. “National Biomedical Research Day” was proclaimed by Bill Clinton in 1993 on the 160th anniversary of Nobel’s birth. This day celebrates the central role of biomedical research  in improving human health and longevity.

MISINFORMATION, WRONG INFORMATION AND LACK OF INFORMATION

http://www.flickr.com/photos/truthout/3901813960/
This image was paired with the story: Insurers Shun Those Taking Certain Meds

Philip Hickey at Behaviorism and Mental Health discusses homosexuality. Philip: “homosexuality is a complex phenomenon which defies simplistic explanations. Unfortunately in this field valid information and communication often take a back seat to bigotry and prejudice.”

In his post “Want go Dutch…or German…or French?” at HUB’s LIST of medical fun facts Herbert Mathewson, MD argues that “Before trying to copy other nation’s health care systems we should probably actually learn about them.” The outcomes of the Dutch switch from a system of mandatory social insurance administered by nonprofit sick funds to mandatory basic insurance that citizens had to buy from private insurance companies (“managed competition”) are appalling! I can imagine that the idea that the Dutch reforms provide a successful model for U.S. Medicare seems bizarre. (Herbert’s post is based on a NEJM article “Sobering Lessons from the Netherlands”).

Henry Stern of InsureBlog notes that as far as RomneyCare© (Massachusetts health care reform) is concerned it’s not so much lack of information per se that’s the problem. It’s information that’s wrong that gets you in trouble.

Robert Centor of Medrants simply submitted one sentence:
“I am a physician, not a provider, and Groopman agrees. – http://www.medrants.com/archives/6505″
This distinction between physicians and providers is similar to the distinction between consumers and patients, and I agree.

Rich Fogoros (DrRich) of The Covert Rationing Blog discusses recent article in the New York Times about whether nurses with a doctorate degree ought to be addressed as “doctor.” Most doctors think calling a nurse “doctor” is not appropriate and confusing for patients.
A medical student running the blog The Reflex Hammer agrees: medical students with a doctoral degree don’t introduce themselves as “Doctor” to a patient either, don’t they?
Dr Rich, an old hand, thinks otherwise. While it is indeed comforting that doctors should be so concerned about patients knowing everything they’re supposed to know, the fact (according to dr. Rich) is that the doctor-nurse controversy is a distraction.

INFORMATION YOU NEED


http://www.flickr.com/photos/nirak/1386793065/
credit: mattahan.deviantart.com/
Note: this is a librarian!!

And of course you always hope that you find the information you need or that you can inform people the right way.

Medaholic wonders whether you still would be a medical doctor if you knew that it didn’t pay as much? What sorts of information would help you determine whether this is a career worth pursuing?

The post, by Chris Langston, at the John A. Hartford Foundation blog, Health AGEnda details how interested health professionals can get information about how to apply for a new fellowship with the Center for Medicare & Medicaid Innovations office, and urges health professionals interested in improving health care for older adults to apply.

Hospital antimicrobial stewardship programs are prompting more appropriate prescribing of antibiotics, leading to improved patient care, less microbial resistance and lower costs, three studies show. The trick is how to convey this information so hospitals will implement these programs, as only one-third of U.S. facilities currently do. Read more at ACP Hospitalist, in the second contribution of Ryan DuBosar to this round.

We all know that adherence to prescriptions is a problem. But will the Star Ratings system increase adherence? The big question, according to Georg van Antwerp, author of Enabling Healthy Decisionsis whether consumers care about Star Ratings or just focus on lowest price point and access to pharmacies or specific medications.

Louise of the Colorado Health Insurer Insider summarizes her submission quite aptly: “Our submission is about the new Health Insurance Exchanges that will be starting here in the US soon. This post discusses how consumers will get INFORMATION about the health plans through the exchanges. Currently, consumers get their information through health insurance brokers or directly through the insurance carrier. If there are people to answer questions for consumers with the exchanges, how will the plans be more or less expensive”

The post that Reflex Hammer submitted (the one above was just picked by me) concerns informing young children about vegetables. A few weeks ago he and a classmate were invited to give a presentation to 1st graders at an inner-city school. Wishing to combat obesity, they developed a lesson plan about vegetables. They were heartened by how much the adorable kids already knew about vegetables and how enthusiastic they became about eating their greens. An adorable initiative and a great post to end this Grand Rounds, since it illustrates the importance of doctors who enjoy to take their time to inform people.

I just want to mention one other post, by Mike Cadogan at Life at the fast Lane. Mike doesn’t blog a lot lately, because he is preparing presentations for an important Emergency Medicine meeting. But Mike does share some of this journey with us in The 11 Phases Of Grief  Presentation Preparation. Reading these 11 stages, the similarities between writing a lecture and writing for Grand Rounds struck me. Except that beer had to be replaced by wine….

Mike is in stage 7-9, I am in stage 10-11. Stage 11 is Evaluation: What will I do different next time? First, I won’t go for two blog carnivals at the same time, I won’t plan a Grand Round when I’m away for the weekend* (I just need a lot of time) and I should refrain from adding posts that weren’t even submitted….

Will you remind me next time?

I hope that you enjoyed this Grand Rounds and that it wasn’t too much information. I enjoyed reading and compiling all our posts!

Related articles





Your Medical Mind. How to Decide What is Right for You [Book Review]

3 10 2011

I enjoyed reading “Your Medical Mind” from start to end. The style of this book was light, but the content was not. Jerome Groopman, oncologist, and Pamela Hartzband, endocrinologist, are to be congratulated on their ability to write clearly about a difficult topic. They explain all aspects about making the right medical choices, in a way that is comprehensible to all.

What makes their book so enlightening is that Groopman and Hartzband illustrate each aspect of medical decisionmaking with real patient stories. In fact the entire book is largely based on interviews with scores of patients of different ages, of different economic status and with different medical conditions.

The authors also drew on research and insights from doctors, psychologists, economists and other experts to shed more light on forces that can aid or impede our thinking when we have to make those decisions.
For those who want to explore things further, there are 213 notes (appr. 80 pages!) and a bibliography of 20 pages at the end of the book.

The first chapter “Where am I in the numbers” deals… right… with numbers, or basic statistics. A topic that patients (and quite some doctors!) often find difficult to understand. This chapter explains Relative Risk Reduction (RRR), Control Event Rate (Basic Risk), Absolute Risk Reduction (ARR) and Numbers Needed to Treat (NNT) without hardly mentioning these terms.

The authors illustrate these and other principles with the story of Susan. Susan is a bit overweight and has a high cholesterol “of the bad kind” (LDL). Her GP concludes: “Since you’re active and already follow a healthy diet, I think it is time for medication. Fortunately, we have a good treatment for this [statins]. Here is a prescription. I’ll see you again in a month”.

But Susan doesn’t take the prescription. Why? First Susan is a doubter and a minimalist. She wants the minimum necessary, certain that “less is more”.  For this is how she was raised. Second, Susan is very much like her father, who had a similar high cholesterol, never took a pill, yet lived a long, full and healthy life. Therefore she believes that for people like her these high levels of LDL-cholesterol are not necessarily dangerous. Third, she  meets an acquaintance who suffers from debilitating muscle pain as a side effect of the statins.

When Susan’s GP hears that she decided not to take her medicine, her face tightens in concern: “It s very important to take this medication. You really need it”. She explains that statin pills will lower her risk of a heart attack over the next 10 years by as much as 30 % [RRR]. She adds that the risk of side effects is very small and often reversible.

Sinds 30% less risk of myocardial infarction (heart attack, MI) sounds impressive, Susan promised her doctor to reconsider her decision. As many other people she searches the Web for medical information. After months (!) she finds a government-sponsored link with objective patient information and a 10-year heart attack risk calculator. By entering all the requested information, she finds out that her basic MI risk is 1%. This means that 1 of 100 (or 3 of 300) people with this level of risk will have a heart attack in the next 10 years (background risk without taking treatment).

Let’s apply that benefit to a group of 300 women like Susan, where 3 of them would have a MI without taking statins. If we treat them all, we would prevent one MI—because we prevent 1 MI in 3 women (30% RRR). The other 2 women would still have a MI despite taking the medicine. The remaining 297 would not have had a heart attack even without the medication, so they wouldn’t have benefited from taking it. Thus 300 persons with this background risk need to be treated to prevent one heart attack. This is the number needed to treat (NNR).

Research has shown that people respond most profoundly to “stories”. Statistics can help to merge science with stories and fit single anecdotes into the larger context of all people who are treated. Statistics (and “evidence” in general) allows people to make an informed choice. 

Susan’s story also illustrates that framing  is very important. When you hear that a statin lowers your risk by 30% (RRR), it sounds as if you are at 100% risk and thus have a great benefit. But reframing the effect as a chance of 1 in 300 persons to have a benefit, may shift the balance for you. Susan concluded that the benefits didn’t outweigh the risks. Others may look at it another way: If there is a chance I could be the one person out of the 300 who avoids a heart attack, then the statin is 100% effective for me. 

Pharmaceutic industries understand a great deal about how people decide whether to take a medicine. They frame information about benefit in the most favorable way and exploit the power of availability bias* using carefully crafted images and anecdotes, and giving implicit messages while  marginalizing side effects.

Various studies and patient stories discussed in the book clearly show that patients choose differently when they are given clearer information about benefits and risks. Surprisingly, their choice often differs from the treatment options the experts see as “best”.

As we have seen the attitude of the doctor and the way he/she frames the medical information also matters. Susan’s GP framed the information in such a way that it overemphasized the benefits of treatment with statins, the option she saw as “best”. This GP later refused Susan as a patient, because she didn’t follow her instructions. Her next doctor: “It is the old paternalistic way of dealing with patients. Ultimately you know, patients have final control of what goes on. (….) It is not like you just go: “Boom, boom, boom, here is the prescription”.

The irony is that most people will accept the default option: they assume that what is routinely recommended is best. If it turns out differently, however, they may feel strong regret. In contrast, if the risk is taken into account beforehand, people may experience side effects less seriously. Furthermore people have a tremendous ability to adapt.

The book learns us the differences between believers and doubters, maximalists and minimalists, naturalism and technology orientation and the importance of availability bias*, omission bias*, decisional conflict, loss aversion*, expected utility*, autonomy and control.

Our preferences about treatment, may depend on our personality, the way we were raised as kids and our previous experiences. This applies to both patients and doctors. As an example, the authors explain why one of them became a believer and a maximalist and the other a doubter and a minimalist. Until some bad experience with an aggressive and unsuccessful surgery made the maximalist a bit more risk-averse.

The book offers several examples of doctors  advocating treatments on basis of their beliefs or expertise. A surgeon wants to cure prostate cancer by surgery while focusing on the unacceptable sides of radiation, while radiation therapists emphasize unacceptable side effects of surgery. Yet others make a case for “watchful waiting”.
More than before, I realize that choices are highly personal and that I, too, have my own preferences. For instance, I tend to favor watchful waiting in case of low risk prostate cancer, possibly because I am a doubter in most respects, and have worked with Prof Schröder who supports watchful waiting. However, for some men this watchful waiting may become watchful worrying and they might just prefer to get the cancer out. Even at the cost of sexual and urinary function.

Interesting is also the notion that “the best” doctors or the “most renowned hospitals” may not always be the best for you. An expert who looks totally bored, saying you’re a “typical case” may give you an anonymous feeling. A nurse’s silent shrug when you express dismay about losing a lot of weight, may reinforce this sense. This can be a reason to clinch to your own community hospital and not choosing a large, bustling cancer center.

Another AHA moment for me was about end of life decisions, described in the touching chapter 8. The authors describe that nearly half of the patients were inconsistent in their wishes about what therapies they wanted, whether they had completed a living will or advance directive or not. This is because they often can’t imagine what they will want and how much they can endure when their condition shifts from healthy to sick and then to even sicker. On the other hand rigid sticking to directives may pose a dilemma to the carer. Are resuscitation and intubation allowed as temporary interventions if not meant to artificially sustain life?

In short, “Your Medical Mind” is an interesting and instructive book, that is not only of value for patients and carers, but also for doctors ànd future patients (and remember everyone is a patient sometimes).

Does this mean that “Your Medical Mind” is an “essential companion that will show us how to chart a clear path through this sea of confusion” as the book flap and introduction promise?

And is it true that the answer to the question “How do you know what is right for you? lies not with the experts, but within you?”

These seem too ambitious claims.

For a good decision process knowing your preferences and the forces that can influence your choice, is not enough. A good health literacy is important too. Apart from a chapter that deals with statistics, this book offers little info on that topic.

What about minimalistic naturalists who choose a homeopathic treatment for cancer? This choice might fit the medical mind of those patients, and of course they have every right to make their own decisions, but is it truly “right for them”?

I get the impression that the authors underestimate the value of “evidence”. They are very skeptical, not only about pharmaceutical companies, but also about recommendations in guidelines, whether they are evidence based or not.

In the examples all treatments are almost equally effective. This leaves a grey zone for where there is no black and white answer about when and how to treat. Often, some treatments are superior to others (for certain patient groups).

Thus, the authors give little attention to the importance of objective medical information itself, as a basis for decision making. They also pay no attention to shared decision making, as e-patient Dave emphasizes in his review.

Still, I loved the book. It completes my knowledge of EBM and information sources.

It also made me curious about another book by Groopman “How doctors think” , which has rapidly risen to the top of the New York Times bestseller list since its release in March 2007.  Dr Shock just reviewed it. Perhaps we should exchange our books….

Title: Your Medical Mind
Author: Jerome Groopman, M.D., Pamela Hartzband, M.D.
Publisher: The Penguin Press
Book: Hardcover, 320 pages
Buy: Amazon.com

  • availability bias: overweighting evidence that comes easily to mind.
  • loss aversion: the reluctance to risk side effects for what is pursued to be a small benefit
  • expected utility = [probability x outcome) X (utility of outcome)
  • omission bias: avoiding treatment because of anticipation of regret




Medical Black Humor, that is Neither Funny nor Appropriate.

19 09 2011

Last week, I happened to see this Facebook post of the The Medical Registrar where she offends a GP, Anne Marie Cunningham*, who wrote a critical post about black medical humor at her blog “Wishful Thinking in Medical Education”. I couldn’t resist placing a likewise “funny” comment in this hostile environment where everyone seemed to agree (till then) and try to beat each other in levels of wittiness (“most naive child like GP ever” – “literally the most boring blog I have ever read”,  “someone hasn’t met many midwives in that ivory tower there.”, ~ insulting for a trout etc.):

“Makes no comment, other than anyone who uses terms like “humourless old trout” for a GP who raises a relevant point at her blog is an arrogant jerk and an unempathetic bastard, until proven otherwise…  No, seriously, from a patient’s viewpoint terms like “labia ward” are indeed derogatory and should be avoided on open social media platforms.”

I was angered, because it is so easy to attack someone personally instead of discussing the issues raised.

Perhaps you first want to read the post of Anne Marie yourself (and please pay attention to the comments too).

Social media, black humour and professionals…

Anne Marie mainly discusses her feelings after she came across a discussion between several male doctors on Twitter using slang like ‘labia ward’ and ‘birthing sheds’ for birth wards, “cabbage patch” to refer to the intensive care and madwives for midwives (midwitches is another one). She discussed it with the doctors in question, but only one of them admitted he had perhaps misjudged sending the tweet. After consulting other professionals privately, she writes a post on her blog without revealing the identity of the doctors involved. She also puts it in a wider context by referring to  the medical literature on professionalism and black humour quoting Berk (and others):

“Simply put, derogatory and cynical humour as displayed by medical personnel are forms of verbal abuse, disrespect and the dehumanisation of their patients and themselves. Those individuals who are the most vulnerable and powerless in the clinical environment – students, patients and patients’ families – have become the targets of the abuse. Such humour is indefensible, whether the target is within hearing range or not; it cannot be justified as a socially acceptable release valve or as a coping mechanism for stress and exhaustion.”

The doctors involved do not make any effort to explain what motivated them. But two female anesthetic registrars frankly comment to the post of Anne Marie (one of them having created the term “labia ward”, thereby disproving that this term is misogynic per se). Both explain that using such slang terms isn’t about insulting anyone and that they are still professionals caring for patients:

 It is about coping, and still caring, without either going insane or crying at work (try to avoid that – wait until I’m at home). Because we can’t fall apart. We have to be able to come out of resus, where we’ve just been unable to save a baby from cotdeath, and cope with being shouted and sworn at be someone cross at being kept waiting to be seen about a cut finger. To our patients we must be cool, calm professionals. But to our friends, and colleagues, we will joke about things that others would recoil from in horror. Because it beats rocking backwards and forwards in the country.

[Just a detail, but “Labia ward” is a simple play on words to portray that not all women in the “Labor Ward” are involved in labor. However, this too is misnomer.  Labia have little to do with severe pre-eclampsia, intra-uterine death or a late termination of pregnancy]

To a certain extent medical slang is understandable, but it should stay behind the doors of the ward or at least not be said in a context that could offend colleagues and patients or their carers. And that is the entire issue. The discussion here was on Twitter, which is an open platform. Tweets are not private and can be read by other doctors, midwives, the NHS and patients. Or as e-Patient Dave expresses so eloquently:

I say, one is responsible for one’s public statements. Cussing to one’s buddies on a tram is not the same as cussing in a corner booth at the pub. If you want to use venting vocabulary in a circle, use email with CC’s, or a Google+ Circle.
One may claim – ONCE – ignorance, as in, “Oh, others could see that??” It must, I say, then be accompanied by an earnest “Oh crap!!” Beyond that, it’s as rude as cussing in a streetcorner crowd.

Furthermore, it seemed the tweet served no other goal as to be satirical, sardonic, sarcastic and subversive (words in the bio of the anesthetist concerned). And sarcasm isn’t limited to this one or two tweets. Just the other day he was insulting to a medical student saying among other things:“I haven’t got anything against you. I don’t even know you. I can’t decide whether it’s paranoia, or narcissism, you have”. 

We are not talking about restriction of “free speech” here. Doctors just have to think twice before they say something, anything on Twitter and Facebook, especially when they are presenting themselves as MD.  Not only because it can be offensive to colleagues and patients, but also because they have a role model function for younger doctors and medical students.

Isolated tweets of one or two doctors using slang is not the biggest problem, in my opinion. What I found far more worrying, was the arrogant and insulting comment at Facebook and the massive support it got from other doctors and medical students. Apparently there are many “I-like-to-exhibit-my-dark-humor-skills-and-don’t-give-a-shit-what-you think-doctors” at Facebook (and Twitter) and they have a large like-minded medical audience: the “medical registrar page alone has 19,000 (!) “fans”.

Sadly there is a total lack of reflection and reason in many of the comments. What to think of:

“wow, really. The quasi-academic language and touchy-feely social social science bullshit aside, this woman makes very few points, valid or otherwise. Much like these pages, if you’re offended, fuck off and don’t follow them on Twitter, and cabbage patch to refer to ITU is probably one of the kinder phrases I’ve heard…”

and

“Oh my god. Didnt realise there were so many easily offended, left winging, fun sponging, life sucking, anti- fun, humourless people out there. Get a grip people. Are you telling me you never laughed at the revue’s at your medical schools?”

and

“It may be my view and my view alone but the people who complain about such exchanges, on the whole, tend to be the most insincere, narcissistic and odious little fuckers around with almost NO genuine empathy for the patient and the sole desire to make themselves look like the good guy rather than to serve anyone else.”

It seems these doctors and their fans don’t seem to possess the communicative and emphatic skills one would hope them to have.

One might object that it is *just* Facebook or that “#twitter is supposed to be fun, people!” (dr Fiona) 

I wouldn’t agree for 3 reasons:

  • Doctors are not teenagers anymore and need to act as grown-ups (or better: as professionals)
  • There is no reason to believe that people who make it their habit to offend others online behave very differently IRL
  • Seeing Twitter as “just for fun” is an underestimation of the real power of Twitter

Note: *It is purely coincidental that the previous post also involved Anne Marie.





I Got the Wrong Request from the Wrong Journal to Review the Wrong Piece. The Wrong kind of Open Access Apparently, Something Wrong with this Inherently…

27 08 2011

Meanwhile you might want to listen to “Wrong” (Depeche Mode)

Yesterday I screened my spam-folder. Between all male enhancement and lottery winner announcements, and phishing mails for my bank account, there was an invitation to peer review a paper in “SCIENCE JOURNAL OF PATHOLOGY”.

Such an invitation doesn’t belong in the spam folder, doesn’t it? Thus I had a closer look and quickly screened the letter.

I don’t know what alarmed me first. The odd hard returns, the journal using a Gmail address, an invitation for a topic (autism) I knew nothing about, an abstract that didn’t make sense and has nothing to do with Pathology, the odd style of the letter: the informal, but impersonal introduction (How are you? I am sure you are busy with many activities right now) combined with a turgid style (the paper addresses issues of value to our broad-based audience, and that it cuts through the thick layers of theory and verbosity for them and makes sense of it all in a clean, cohesive manner) and some misspellings. And then I never had an invitation from an editor, starting with the impersonal “Colleagues”… 

But still it was odd. Why would someone take the trouble of writing such an invitation letter? For what purpose? And apparently the person did know that I was a scientist, who does -or is able to- peer review medical scientific papers. Since the mail was send to my Laika Gmail account, the most likely source for my contact info must have been my pseudonymous blog. I seldom use this mail account for scientific purposes.

What triggered my caution flag the most, was the topic: autism. I immediately linked this to the anti-vaccination quackery movement, that’s trying to give skeptic bloggers a hard time and fights a personal, not a scientific battle. I also linked it to #epigate, that was exposed at Liz Ditz I Speak of Dreams, a blog with autism as a niche topic.

#Epigate is the story of René Najeraby aka @EpiRen, a popular epidemiologist blogger who was asked to stop engaging in social media by his employers, after a series of complaints by a Mr X, who also threatened other pseudonymous commenters/bloggers criticizing his actions. According to Mr. X no one will be safe, because all i have to do is file a john doe – or hire a cyber investigator. these courses of action cost less than $10,000 each; which means every person who is afraid of the light can be exposed”  In another comment at Liz Ditz’ he actually says he will go after a specific individual: “Anarchic Teapot”.

Ok, I admit that the two issues might be totally coincidental, and they probably are, but I’m hypersensitive for people trying to silence me via my employers (because that did happen to me in the past). Anyway,asking a pseudonymous blogger to peer-review might be a way to hack the real identity of such a blogger. Perhaps far-fetched, I know.

But what would the “editor” do if I replied and said “yes”?

I became curious. Does The Science Journal of Pathology even exist?

Not in PubMed!!

But the Journal “Science Journal of Pathology” does exist on the Internet…. and John Morrison is the editor. But he is the only one. As a matter of fact he is the entire staff…. There are “search”, “current” and “archives” tabs, but the latter two are EMPTY.

So I would have the dubious honor of reviewing the first paper for this journal?…. ;)

  1. (First assumption – David) – High school kids are looking for someone to peer review (and thus improve) their essays to get better grades.
    (me: school kids could also be replaced by “non-successful or starting scientists”)
  2. (Second assumption – David) Perhaps they are only looking to fill out their sucker lists. If you’ve done a bad review, they may blackmail you in other to keep it quiet.
  3. (me) – The journal site might be a cover up for anything (still no clue what).
  4. (me) - The site might get a touch of credibility if the (upcoming) articles are stamped with : “peer-reviewed by…”
  5. (David & me) the scammers target PhD’s or people who the “editors” think have little experience in peer reviewing and/or consider it a honor to do so.
  6. (David & me) It is phishing scam.You have to register on the journal’s website in order to be able to review or submit. So they get your credentials. My intuition was that they might just try to track down the real name, address and department of a pseudonymous blogger, but I think that David’s assumption is more plausible. David thinks that a couple of people in Nigeria is just after your password for your mail, amazon, PayPal etc for “the vast majority of people uses the same password for all logins, which is terribly bad practice, but they don’t want to forget it.”

With David, I would like to warn you for this “very interesting phishing scheme”, which aims at academics and especially PhD’s. We have no clue as to their real intentions, but it looks scammy.

Besides that the scam may affect you personally, such non-existing and/or low quality open access journals do a bad service to the existing, high quality open access journals.

There should be ways to remove such scam websites from the net.

Notes

“Academic scams – my wife just received a version of this for an Autism article, PhD/DPhil/Masters students beware that mentions a receipt of a similar autism”
Related articles




#FollowFriday #FF @DrJenGunter: EBM Sex Health Expert Wielding the Lasso of Truth

19 08 2011

If you’re on Twitter you probably seen the #FF or #FollowFriday phenomenon. FollowFriday is a way to recommend people on Twitter to others. For at least 2 reasons: to acknowledge your favorite tweople and to make it easier for your followers to find new interesting people.

However, some #FollowFriday tweet-series are more like a weekly spam. Almost 2 years ago I blogged about the misuse of FF-recommendations and I gave some suggestions to do #FollowFriday the right way: not by sheer mentioning many people in numerous  tweets, but by recommending one or a few people a time, and explaining why this person is so awesome to follow.

Twitter Lists are also useful tools for recommending people (see post). You could construct lists of your favorite Twitter people for others to follow. I have created a general FollowFridays list, where I list all the people I have recommended in a #FF-tweet and/or post.

In this post I would like to take up the tradition of highlighting the #FF favs at my blog. .

This FollowFriday I recommend:  

Jennifer Gunter

Jennifer Gunter (@DrJenGunter at Twitter), is a beautiful lady, but she shouldn’t be tackled without gloves, for she is a true defender of evidence-based medicine and wields the lasso of truth.

Her specialty is OB/GYN. She is a sex health expert. No surprise, many tweets are related to this topic, some very serious, some with a humorous undertone. And there can be just fun (re)tweets, like:

LOL -> “@BackpackingDad: New Word: Fungry. Full-hungry. “I just ate a ton of nachos, but hot damn am I fungry for those Buffalo wings!””

Dr Jen Gunter has a blog Dr. Jen Gunther (wielding the lasso of truth). 

Again we find the same spectrum of posts, mostly in the field of ob/gyn. You need not be an ob/gyn nor an EBM expert to enjoy them. Jen’s posts are written in plain language, suitable for anyone to understand (including patients).

Some titles:

In addition, There are also hilarious posts like “Cosmo’s sex position of the day proves they know nothing about good sex or women“,where she criticizes Cosmo for tweeting impossible sex positions (“If you’re over 40, I dare you to even GET into that position! “), which she thinks were created by one of the following:

A) a computer who has never had sex and is not programmed to understand how the female body bends.
B) a computer programmer who has never has sex and has no understanding of how the female body bends.
C) a Yogi master/Olympic athlete.

Sometimes the topic is blogging. Jen is a fierce proponent of medical blogging. She sees it as a way to “promote” yourself as a doctor, to learn from your readers and to “contribute credible content drowns out garbage medical information” (true) and as an ideal platform to deliver content to your patients and like-minded medical professionals. (great idea)

Read more at:

You can follow Jen at her Twitter-account (http://twitter.com/#!/DrJenGunter) and/or you can follow my lists. She is on:  ebm-cochrane-sceptics and the followfridays list.

Of course you can also take a subscription to her blog http://drjengunter.wordpress.com/

Related articles





HOT TOPIC: Does Soy Relieve Hot Flashes?

20 06 2011

ResearchBlogging.orgThe theme of the Upcoming Grand Rounds held at June 21th (1st day of the Summer) at Shrink Rap is “hot”. A bit far-fetched, but aah you know….shrinks“. Of course they hope  assume  that we will express Weiner-like exhibitionism at our blogs. Or go into spicy details of hot sexpectations or other Penis Friday NCBI-ROFL posts. But no, not me, scientist and librarian to my bone marrow. I will stick to boring, solid science and will do a thorough search to find the evidence. Here I will discuss whether soy really helps to relieve hot flashes (also called hot flushes).

…..As illustrated by this HOT picture, I should post as well…..

(CC from Katy Tresedder, Flickr):

Yes, many menopausal women plagued by hot flashes take their relief  in soy or other phytoestrogens (estrogen-like chemicals derived from plants). I know, because I happen to have many menopausal women in my circle of friends who prefer taking soy over estrogen. They rather not take normal hormone replacement therapy, because this can have adverse effects if taken for a longer time. Soy on the other hand is considered a “natural remedy”, and harmless. Probably physiological doses of soy (food) are harmless and therefore a better choice than the similarly “natural” black cohosh, which is suspected to give liver injury and other adverse effects.

But is soy effective?

I did a quick search in PubMed and found a Cochrane Systematic Review from 2007 that was recently edited with no change to the conclusions.

This review looked at several phytoestrogens that were offered in several ways, as: dietary soy (9x) (powder, cereals, drinks, muffins), soy extracts (9x), red clover extracts (7x, including Promensil (5x)), Genistein extract , Flaxseed, hop-extract  and a Chinese medicinal herb.

Thirty randomized controlled trials with a total of 2730 participants met the inclusion criteria: the participants were women in or just before their menopause complaining of vasomotor symptoms (thus having hot flashes) for at least 12 weeks. The intervention was a food or supplement with high levels of phytoestrogens (not any other herbal treatment) and this was compared with placebo, no treatment or hormone replacement therapy.

Only 5 trials using the red clover extract Promensil were homogenous enough to combine in a meta-analysis. The effect on one outcome (incidence of hot flashes) is shown below. As can be seen at a glance, Promensil had no significant effect, whether given in a low (40 mg/day) or a higher (80 mg/day) dose. This was also true for the other outcomes.

The other phytoestrogen interventions were very heterogeneous with respect to dose, composition and type. This was especially true for the dietary soy treatment. Although some of the trials showed a positive effect of phytoestrogens on hot flashes and night sweats, overall, phytoestrogens were no better than the comparisons.

Most trials were small,  of short duration and/or of poor quality. Fewer than half of the studies (n=12) indicated that allocation had been concealed from the trial investigators.

One striking finding was that there was a strong placebo effect in most trials with a reduction in frequency of hot flashes ranging from 1% to 59% .

I also found another systematic review in PubMed by Bolaños R et al , that limited itself only to soy. Other differences with the Cochrane Systematic Review (besides the much simpler search ;) ) were: inclusion of more recently published clinical trials, no inclusion of unpublished studies and less strict exclusion on basis of low methodological quality. Furthermore, genestein was (rightly) considered as a soy product.

The group of studies that used soy dietary supplement showed the highest heterogeneity. Overall, the results “showed a significant tendency(?)  in favor of soy. Nevertheless the authors conclude (similar to the Cochrane authors), that  it is still difficult to establish conclusive results given the high heterogeneity found in the studies. (but apparently the data could still be pooled?)

References

  • Lethaby A, Marjoribanks J, Kronenberg F, Roberts H, Eden J, & Brown J. (2007). Phytoestrogens for vasomotor menopausal symptoms Cochrane Database of Systematic Reviews (4) : 10.1002/14651858.CD001395.pub3.
  • Bolaños R, Del Castillo A, & Francia J (2010). Soy isoflavones versus placebo in the treatment of climacteric vasomotor symptoms: systematic review and meta-analysis. Menopause (New York, N.Y.), 17 (3), 660-6 PMID: 20464785




Science Asks to Retract the XMRV-CFS Paper, it Should Never Have Accepted in the First Place.

2 06 2011

Wow! Breaking!

As reported in WSJ earlier this week [1], editors of the journal Science asked Mikovits and her co-authors to voluntary retract their 2009 Science paper [2].

In this paper Mikovits and colleagues of the Whittemore Peterson Institute (WPI) and the Cleveland Clinic, reported the presence of xenotropic murine leukemia virus–related virus (XMRV) in peripheral blood mononuclear cells (PBMC) of patients with chronic fatigue syndrome (CFS). They used the very contamination-prone nested PCR to detect XMRV. This 2 round PCR enables detection of a rare target sequence by producing an unimaginable huge number of copies of that sequence.
XMRV was first demonstrated in cell lines and tissue samples of prostate cancer patients.

All the original authors, except for one [3], refused to retract the paper [4]. This prompted Science editor-in-chief Bruce Alberts to  issue an Expression of Concern [5], which was published two days earlier than planned because of the early release of the news in WSJ, mentioned above [1]. (see Retraction Watch [6]).

The expression of concern also follows the publication of two papers in the same journal.

In the first Science paper [7] Knox et al. found no Murine-Like Gammaretroviruses in any of the 61 CFS Patients previously identified as XMRV-positive, using the same PCR and culturing techniques as used by Lombardi et al. This paper made ERV (who consistently critiqued the Lombardi paper from the startlaugh-out-loud [8], because Knox also showed that human sera neutralize the virus in the blood,indicating it can hardly infect human cells in vivo. Knox also showed the WPIs sequences to be similar to the XMRV plasmid VP62, known to often contaminate laboratory agents.*

Contamination as the most likely reason for the positive WPI-results is also the message of the second Science paper. Here, Paprotka et al. [9]  show that XMRV was not present in the original prostate tumor that gave rise to the XMRV-positive 22Rv1 cell line, but originated -as a laboratory artifact- by recombination of two viruses during passaging the cell line in nude mice. For a further explanation see the Virology Blog [10].

Now Science editors have expressed their concern, the tweets, blogposts and health news articles are preponderantly negative about the XMRV findings in CFS/ME, where they earlier were positive or neutral. Tweets like “Mouse virus #XMRV doesn’t cause chronic fatigue #CFS http://t.co/Bekz9RG (Reuters) or “Origins of XMRV deciphered, undermining claims for a role in human disease: Delineation of the origin of… http://bit.ly/klDFuu #cancer” (National Cancer Institute) are unprecedented.

Thus the appeal by Science to retract the paper is justified?

Well yes and no.

The timing is rather odd:

  • Why does Science only express concern after publication of these two latest Science papers? There are almost a dozen other studies that failed to reproduce the WPI-findings. Moreover, 4 earlier papers in Retrovirology already indicated that disease-associated XMRV sequences are consistent with laboratory contamination. (see an overview of all published articles at A Photon in the Darkness [11])
  • There are still (neutral) scientist who believe that genuine human infections with XMRV still exist at a relatively low prevalence. (van der Kijl et al: xmrv is not a mousy virus [12])
  • And why doesn’t Science await the results from the official confirmation studies meant to finally settle whether XMRV exist in our blood supply and/or CFS (by the Blood Working Group and the NIH sponsored study by Lipkin et al.)
  • Why (and this is the most important question) did Science ever decide to publish the piece in the first place, as the study had several flaws.
I do believe that new research that turns existing paradigms upside down deserves a chance. Also a chance to get disproved. Yes such papers might be published in prominent scientific journals like Science, provided they are technically and methodologically sound at the very least. The Lombardi paper wasn’t.

Here I repeat my concerns expressed in earlier posts [13 and 14]. (please read these posts first, if you are unfamiliar with PCR).

Shortcomings in PCR-technique and study design**:

  • No positive control and no demonstration of the sensitivity of the PCR-assay. Usually a known concentration or a serial dilution of a (weakly) positive sample is taken as control. This allows to determine sensitivity of the assay.
  • Aspecific bands in negative samples (indicating suboptimal conditions)
  • Just one vial without added DNA per experiment as a negative control. (Negative controls are needed to exclude contamination).
  • CFS-Positive and negative samples are on separate gels (this increases bias, because conditions and chance of contamination are not the same for all samples, it also raises the question whether the samples were processed differently)
  • Furthermore only results obtained at the Cleveland Clinic are shown. (were similar results not obtained at the WPI? see below)
Contamination not excluded as a possible explanation
  • No variation in the XMRV-sequences detected (expected if the findings are real)
  • Although the PCR is near the detection limit, only single round products are shown. These are much stronger then expected even after two rounds. This is very confusing, because WPI later exclaimed that preculturing PBMC plus nested PCR (2 rounds) were absolutely required to get a positive result. But the Legend of Fig. 1 in the original Science paper clearly says PCR after one round. Strong (homogenous) bands after one round of PCR are highly suggestive of contamination.
  • No effort to exclude contamination of samples with mouse DNA (see below)
  • No determination of the viral DNA integration sites.

Mikovits also stressed that she never used the XMRV-positive cell lines in 2009. But what about the Cleveland Clinic, nota bene the institute that co-discovered XMRV and that had produced the strongly positive PCR-products (…after a single PCR-round…)?

On the other hand, the authors had other proof of the presence of retrovirus: detection of (low levels of) antibodies to XMRV in patient sera, and transmissibility of XMRV. On request they later applied the mouse mitochondrial assay to successfully exclude the presence of mouse DNA in their samples. (but this doesn’t exclude all forms of contamination, and certainly not at Cleveland Clinic)

These shortcomings alone should have been sufficient for the reviewers, had they seen it and /or deemed it of sufficient importance, to halt publication and to ask for additional studies**.

I was once in a similar situation. I found a rare cancer-specific chromosomal translocation in normal cells, but I couldn’t exclude PCR- contamination. The reviewers asked me to exclude contamination by sequencing the breakpoints, which only succeeded after two years of extra work. In retrospect I’m thankful to the reviewers for preventing me from publishing a possible faulty paper which could have ruined my career (yeah, because contamination is a real problem in PCR). And my paper improved tremendously by the additional experiments.

Yes it is peer review that failed here, Science. You should have asked for extra confirmatory tests and a better design in the first place. That would have spared a lot of anguish, and if the findings had been reproducible, more convincing and better data.

There were a couple of incidents after the study was published, that made me further doubt the robustness of WPI’s scientific data and even (after a while) I began to doubt whether WPI, and Judy Mikovits in particular, is adhering to good scientific (and ethical) practices.

  • WPI suddenly disclosed (Feb 18 2010) that culturing PBMC’s is necessary to obtain a positive PCR signal.  As a matter of fact they maintain this in their recent protest letter to Science. They refer to the original Science paper, but this paper doesn’t mention the need for culturing at all!! 
  • WPI suggests their researchers had detected XMRV in patient samples from both Dr. Kerr’s and Dr. van Kuppeveld’s ‘XMRV-negative’ CFS-cohorts. Thus in patient samples obtained without a culture-enrichment step…..  There can only be one truth:  main criticism on negative studies was that improper CFS-criteria were used. Thus either this CFS-population is wrongly defined and DOESN’t contain XMRV (with any method), OR it fulfills the criteria of CFS and the XMRV can be detected applying the proper technique. It is so confusing!..
  • Although Mikovits first reported that they found no to little virus variation, they later exclaimed to find a lot of variation.
  • WPI employees behave unprofessional towards colleague-scientists who failed to reproduce their findings.
Other questionable practices 
  • Mikovits also claims that people with autism harbor XMRV. One wonders which disease ISN’t associated with XMRV….
  • Despite the uncertainties about XMRV in CFS-patients, let alone the total LACK of demonstration of a CAUSAL RELATIONSHIP, Mikovits advocates the use of *not harmless* anti-retrovirals by CFS-patients.
  • At this stage of controversy, the WPI-XMRV test is sold as “a reliable diagnostic tool“ by a firm (VIP Dx) with strong ties to WPI. Mikovits even tells patients in a mail: “First of all the current diagnostic testing will define with essentially 100% accuracy! XMRV infected patients”. WTF!? 
  • This test is not endorsed in Belgium, and even Medicare only reimbursed 15% of the PCR-test.
  • The ties of WPI to RedLabs & VIP Dx are not clearly disclosed in the Science Paper. There is only a small Note (added in proof!)  that Lombardi is operations manager of VIP Dx, “in negotiations with the WPI to offer a diagnostic test for XMRV”.
Please see this earlier post [13] for broader coverage. Or read the post [16] of Keith Grimaldi, scientific director of Eurogene, and expert in personal genomics, who I asked to comment on the “diagnostic” tests. In his post he very clearly describes “what is exactly wrong about selling an unregulated clinical test  to a very vulnerable and exploitable group based on 1 paper on a small isolated sample”.

It is really surprising this wasn’t picked up by the media, by the government or by the scientific community. Will the new findings have any consequences for the XMRV-diagnostic tests? I fear WPI will get away with it for the time being. I agree with Lipkin, who coordinates the NIH-sponsored multi-center CFS-XMRV study that calls to retract the paper are premature at this point . Furthermore, -as addressed by WSJ [17]- if the Science paper is retracted, because XMRV findings are called into question, what about the papers also reporting a  link of XMRV-(like) viruses and CFS or prostate cancer?

WSJ reports, that Schekman, the editor-in chief of PNAS, has no direct plans to retract the paper of Alter et al reporting XMRV-like viruses in CFS [discussed in 18]. Schekman considers it “an unusual situation to retract a paper even if the original findings in a paper don’t hold up: it’s part of the scientific process for different groups to publish findings, for other groups to try to replicate them, and for researchers to debate conflicting results.”

I agree, this is a normal procedure, once the paper is accepted and published. Fraud is a reason to retract a paper, doubt is not.

Notes

*samples, NOT patients, as I saw a patient erroneous interpretation: “if it is contamination in te lab how can I have it as a patient?” (tweet is now deleted). No, according to the contamination -theory” XMRV-contamination is not IN you, but in the processed samples or in the reaction mixtures used.

** The reviewers did ask additional evidence, but not with respect to the PCR-experiments, which are most prone to contamination and false results.

  1. Chronic-Fatigue Paper Is Questioned (online.wsj.com)
  2. Lombardi VC, Ruscetti FW, Das Gupta J, Pfost MA, Hagen KS, Peterson DL, Ruscetti SK, Bagni RK, Petrow-Sadowski C, Gold B, Dean M, Silverman RH, & Mikovits JA (2009). Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome. Science (New York, N.Y.), 326 (5952), 585-9 PMID: 19815723
  3. WPI Says No to Retraction / Levy Study Dashes Hopes /NCI Shuts the Door on XMR (phoenixrising.me)
  4. http://wpinstitute.org/news/docs/FinalreplytoScienceWPI.pdf
  5. Alberts B. Editorial Expression of Concern. Science. 2011 May 31.
  6. Science asks authors to retract XMRV-chronic fatigue paper; when they refuse, issue Expression of Concern. 2011/05/31/ (retractionwatch.wordpress.com)
  7. K. Knox, Carrigan D, Simmons G, Teque F, Zhou Y, Hackett Jr J, Qiu X, Luk K, Schochetman G, Knox A, Kogelnik AM & Levy JA. No Evidence of Murine-Like Gammaretroviruses in CFS Patients Previously Identified as XMRV-Infected. Science. 2011 May 31. (10.1126/science.1204963).
  8. XMRV and chronic fatigue syndrome: So long, and thanks for all the lulz, Part I [erv] (scienceblogs.com)
  9. Paprotka T, Delviks-Frankenberry KA, Cingoz O, Martinez A, Kung H-J, Tepper CG, Hu W-S , Fivash MJ, Coffin JM, & Pathak VK. Recombinant origin of the retrovirus XMRV. Science. 2011 May 31. (10.1126/science.1205292).
  10. XMRV is a recombinant virus from mice  (Virology Blog : 2011/05/31)
  11. Science asks XMRV authors to retract paper (photoninthedarkness.com : 2011/05/31)
  12. van der Kuyl AC, Berkhout B. XMRV: Not a Mousy Virus. J Formos Med Assoc. 2011 May;110(5):273-4. PDF
  13. Finally a Viral Cause of Chronic Fatigue Syndrome? Or Not? – How Results Can Vary and Depend on Multiple Factor (laikaspoetnik.wordpress.com: 2010/02/15/)
  14. Three Studies Now Refute the Presence of XMRV in Chronic Fatigue Syndrome (CFS) (laikaspoetnik.wordpress.com 2010/04/27)
  15. WPI Announces New, Refined XMRV Culture Test – Available Now Through VIP Dx in Reno (prohealth.com 2010/01/15)
  16. The murky side of physician prescribed LDTs (eurogene.blogspot.com : 2010/09/06)
  17. Given Doubt Cast on CFS-XMRV Link, What About Related Research? (blogs.wsj.com)
  18. Does the NHI/FDA Paper Confirm XMRV in CFS? Well, Ditch the MR and Scratch the X… and… you’ve got MLV. (laikaspoetnik.wordpress.com : 2010/08/30/)

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