Friday Foolery #10. 6 x X-Rays

“X-rays” were in the news this week, at least there was an illuminating exposure on Twitter. Here are 6 stories, half serious and half not so serious.

[1] First, voters have picked the X-ray machine as the most important scientific invention (objects in science, engineering, technology and medicine), in a poll to celebrate the centenary of the Science Museum in London. As a matter of fact medical inventions were in the top three places in the poll (1. X-ray machines 2. Penicillin and 3. DNA double helix), ahead of the Apollo 10 capsule (no. 4) and the steam engine (8).

BBC: http://news.bbc.co.uk/2/hi/health/8339877.stm
BMJ: http://www.bmj.com/cgi/content/short/339/nov05_3/b4602?rss=1

[2] Margaret Daalman came to hospital complaining of stomach ache – and one glance at her X-ray showed why:  the 52-year-old woman’s stomach contained an entire canteen of cutlery. She had to go under the knife to remove the (78!) forks and spoons. (see fotos here) The woman told the doctors: ‘I don’t know why but I felt an urge to eat the silverware – I could not help myself.’ She was somewhat picky however, as she never ate knives.
The images were actually taken over 30 years ago, but they were published for the first time this week in a Dutch medical magazine. Yes the woman was Dutch. At least according to the Daily Mail…….

However, the actual story published as a case in Medisch Contact is somewhat different.They actually state below the article:

Mededeling redactie

Over deze casus is in de populaire media foutieve berichtgeving gaande. De in andere media opgevoerde ‘mw Daalmans’ heeft niets te maken met deze casus. Het betreft, in tegenstelling tot wat elders wordt beweerd ook geen casus van 30 jaar geleden.

Which means something like: in contrary to what has been stated by the popular press this case has nothing to do with Mrs Daalmans, nor did it happen 30 years ago.
In effect, the Daily Mail mentions both (?) Rotterdam and Sittard as towns where this should have taken place, but in Medisch Contact only Helmond was mentioned. The towns are far apart.

One wonders why, because the story is extraordinary enough.

Daily Mail: http://www.dailymail.co.uk/news/worldnews/article-1223563/The-woman-knife--swallowing-entire-canteen-cutlery.html
Twitter: http://twitter.com/drves/status/5403151285
Medisch Contact: http://medischcontact.artsennet.nl/blad/Tijdschriftartikel/Bestek-in-de-maag.htm

[3] An obese man died after refusing an X-ray taken in a machine for zoo animals because he was too large for the hospital’s X-ray machine, the maximum capacity of most hospital machines being around 200 kilo. Later his wife told that the man felt too humiliated to go to the zoo.

The Local (Germany news in English, Bild.de.) http://www.thelocal.de/society/20091103-22993.html

[4] Todays Friday Funny post of dr. Val at Better Health is Joyful Radiology or Merry X-Ray

Better Health: http://getbetterhealth.com/the-friday-funny-joyful-radiology/2009.11.06

[5] A special X-Ray: CAT-scan

http://www.flickr.com/photos/robinkearney/ / CC BY-NC-SA 2.0

[6] When both your arm and the X-ray are broken:

Cyanide & Happiness @ Explosm.net

Ooh, I wonder whether the great number of X-ray related posts has something to do with the upcoming overlooked holiday: X-ray day (November 8th).

Can someone put the light off?

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• X-ray machine voted top modern discovery in poll (guardian.co.uk)

How a Flu-Virus Invades your Body: An Animation

I’ve seen “viral invasion, replication and spread” more elaborately and scientifically explained, but nothing comes near a clear visual and audible presentation of what happens on a micro-scale.

Here is a video on a Flu Attack that stirs the imagination.

And one thing or another, those kind of videos get really viral on Twitter and blogs as well.

When seeing the video you at least understand why CDC’s motto is: Cover it!

Although the above video has the tags “swine” and “flu” and alludes to H1N1, it gives no specific information on H1N1 (Swine flu), but could be about any influenza virus. For information on H1N1 go to:

• the CDC H1N1 page: http://www.cdc.gov/h1n1flu/
• Flu.gov: http://www.flu.gov/
• Medline Plus: H1N1/Swineflu
• Highlight Health for some specific articles on H1N1
• Informatie van de Rijksoverheid over Nieuwe Influenza A (H1N1): http://www.grieppandemie.nl/
• An up to date map tracking the progress of H1N1 swine flu at: http://flutracker.rhizalabs.com/

Related articles by Zemanta

• MIT Lecture: Reflections on the Current H1N1 Flu (medicineandtechnology.com)
• H1N1 vaccinations start Monday in Quebec (cbc.ca)
• H1N1 could hit 2.5 million: minister (cbc.ca)
• “Swine Flu A “National Emergency”?” and related posts (ibloga.blogspot.com)

Visualization of Paradoxes behind US Health Care

This video nicely explains the paradoxes behind the health care in US: why the US spends more to Health Care, but doesn’t make people healthier (but instead -some- wealthier). It vividly shows why reform is needed.

The video takes data from studies by Dartmouth and the OECD, and uses Gapminder to make the graphs come alive

An introductory Healthcare data tutorial kan be viewed here or at the New Scientist (which shows both video’s and the health data graph)

More information can be found at New Scientist and Discover (blogs)

Hattip: @mrgunn via @clasticdetritus (Twitter)

Peter Palese on H1N1/Influenza, Porcine and Otherwise

more about “MicrobeWorld – Peter Palese on H1N1/I…“, posted with vodpod

Seen on MicrobeWorld, posted by Chris Condayan: a video in which Peter Palese, Professor and Chairman of the Department of Microbiology and Infectious Diseases at Mt. Sinai, explains H1N1/swine flu, the natural herd immunity that all humans share against it, and the reasons why the elderly stand at a lesser risk of contracting the virus.

Found the video interesting? There are a lot more interesting posts, images and video’s on MicrobeWorld to read or watch.

Established in 2003, MicrobeWorld is an interactive multimedia educational outreach initiative from the American Society for Microbiology, a non-profit organization that “promotes awareness and understanding of key microbiological issues to adult and youth audiences, and showcases the significance of microbes in our lives.”

Related articles by Zemanta

• Tamiflu-resistant swine flu case in Quebec (thestar.com)

Beware of Top 50 “Great Tools to Double Check your Doctor” or whatever Lists.

Just the other week I wrote a post “Vanity is the Quicksand of Reasoning: Beware of Top 100 and 50 lists!”

In short this post describes that (some) Top 100 etc lists may not be as useful or innocent as they seem. Some of these lists are created by real scam-sites, who’s only goal is to make money via click-troughs and to get as much traffic as possible, via YOU (and me)!

The scam appears in many guises.

1. As submissions for a  blog carnival, i.e. 100-weight-loss-tips-tricks.
2. An offer of a health care student who asks you to do a guest post (you only have to link back to his/her site).
3. In the form of a mail, dropping you a quick line that you’re included in a top 100 list, possibly worth mentioning to your audience.
4. You just noticed a top 100 list with excellent sites, worth mentioning on Twitter or Friendfeed, so your followers become aware of the sites and pass the message.

The first two are pretty obvious scam. The latter two are more difficult to see through.

Why do I write another post? Because it happened again, today. And I think I should bring the message home more clearly.

Below you see what happens. Berci has found a list with 50 great tools to “Double check your Doctor”. He tweets the link to what he considers a great resource list, and in no time the message and the link are tweeted several times. Some people also post a link on their blog.

1. 
   Berci 50 Great Tools to Double Check Your Doctor http://ff.im/-7q7DA 31 Aug 2009 from FriendFeed
2. 
   lizasisler Good resource list RT @Berci 50 Great Tools to Double Check Your Doctor http://ff.im/-7q7DA 31 Aug 2009 from web
3. 
   bart RT @Berci: 50 Great Tools to Double Check Your Doctor http://ff.im/-7q7DA 31 Aug 2009 from TweetDeck
4. 
   gtherrien RT @bart: 50 Great Tools to Double Check Your Doctor – Online Nursing Classes http://ff.im/-7q9pK 31 Aug 2009 from TweetDeck
5. 
   zorgbeheer DELI 50 Great Tools to Double Check Your Doctor – Online Nursing Classes: You probably know that Googling yo.. http://bit.ly/n1NXc 31 Aug 2009 from twitterfeed
6. 
   ekettell RT@Berci 50 Great Tools to Double Check Your Doctor http://ff.im/-7q7DA 31 Aug 2009 from web
7. 
   RobertLOakes RT @Berci: 50 Great Tools to Double Check Your Doctor http://ff.im/-7q7DA (via @ahier) 31 Aug 2009 from TweetDeck
8. 
   ENTHouse RT @Berci 50 Great Tools to Double Check Your Doctor http://ff.im/-7q7DA 31 Aug 2009 from web
9. 
   sagar13d 50 Great Tools to Double Check Your Doctor. URL: http://tinyurl.com/mlmf47 31 Aug 2009 from web

– this quote was brought to you by quoteurl

Finally this will result in more traffic to the website onlinenursingclasses and a higher rank in Google.

Indeed 12 hours after Berci’s tweet, searching for “50 Great Tools to Double Check Your Doctor” (between quotes) gives just 21 hits (similar hits not shown), many of which can be traced back to the twitter posts.
All but one are positive: the last hit is my warning, which was only received by ahier and TheSofa. Ahier deleted his original positive tweet from Twitter.

Also worrying is that the spam site was bookmarked by various Stumble upon visitors. And that the one person that made the Stumble upon review also “liked” similar sites, like Online Classes and Learn Gasms. So probably a whole team takes care that the site is socially bookmarked. When several people “like” a site others may be attracted to the site as well. That is the principle of social bookmarking sites. And you and I do the rest….

Why is this bad? You can read more in my previous post or in the post “Affiliate sites” at Ellie <3 Libraries.
In addition, Shamsha brought another post to my attention, again from a librarian:

Top 100 Librarian Friendfeeds to follow at cheapie online degrees com at Tame the Web.com.

which refers to

http://www.librarian.net/stax/2970/why-i-dont-accept-guest-posts-from-spammers-or-link-to-them/

Tame the web gives some very good advice

I sometimes see other libloggers linking to sites like these and I have a word of advice: don’t. When we link to low-content sites from our high-content sites, we are telling Google and everyone that we think that the site we are linking to is in some way authoritative, even if we’re saying they’re dirty scammers. We’re helping their page rank and we’re slowly, infinitesimally almost, decreasing the value of Google and polluting the Internet pool in which we frequently swim. Don’t link to spammers.

How do you know that you can’t trust that particular site?

Well here are some features I’ve noticed (for the spam sites in “my”field)

• All the sites that publicized such list were educational, mostly directed at nurses or other health practitioners. Some even end at org. Examples:
  • nursingschools.net
  • associatedegree.org
  • rncentral.com
  • Learn-gasm
  • onlineclasses.org
  • onlinenursepractitionerschools.com
    
  • searchenginecollege.com
  • collegedegree.com
  • ultrasoundtechnicianschools.org
  • phlebotomytechnicianschools.com
  • MiracleFruitPlus.com.
• All sites have a Quick-degree, nursing degree, technician school etc finder. Mostly it is the only information at the ABOUT-section (?!)
• The home page often contains prominent links (clicks) to Kaplan University, University of Phoenix, Grand Canyon University, and/or others.
• People behind the site often approach you actively (below are some examples) to gain your interest.
• It is unclear how the lists are made and who is behind it.
• There is no real information, only lists and degree finders.

So spread the word! Be careful with those list. DON’T LINK TO THEM! And if you see a possible interesting list, first CHECK the site: WHO, WHY, WHAT, WHERE AND WHEN. Once you’ve seen one, you’ve seen them all!

The degree finder at the about page

Prominent links to some Universities

An example of a letter drawing your attention to a list

An example of a letter asking to write a guest post.

Vanity is the Quicksand of Reasoning: Beware of Top 100 and 50 lists!

During the weekend I added some links to sites referring to this blog in the sidebar. There was the 3rd place in the Medgadget competition for the Best New Medical Weblog in 2008,  a nice critique by Danielle Worster (the Health Informaticist) in the “Library + Information Gazette”, the inclusion in the Dutch Twitterguide and a place in the Top 50 Health 2.0 Blogs list of RNCentral (”the place to learn about nursing online”) in 2008.

And recently I was included in another ranking lists, to which I was alerted by a personal email of Amber, saying:

Hi,

We just posted an article, “100 Useful Websites for Medical Librarians” (http://www.nursingschools.net/blog/2009/100-useful-websites-for-medical-librarians/). I thought I’d drop a quick line and let you know in case you thought it was something you’re audience would be interested in reading. Thanks!

Both the RNCentral and the nursingschools.net lists are subjective ranking list of useful sites on nurses-oriented webpages. And although subjective, they contain numerous excellent and trustworthy sites. I was honored and pleased that I was included in those lists together with the Krafty Librarian, David Rothman, the MLA, the NIH, and NLM.

In all fairness, there are also many list (in fact far more such lists) that do not include me. I remember that there was a list of 100 top librarians with quite a number of Australians and no @laikas. I found one post at Lucacept – intercepting the web saying:

BestCollegesonline.com has posted a list of the Top 100 Librarian Tweeters and I’m honoured to say I appear on the list. In fact, there are five Australian Librarians who made it on the list. The other four were heyjudeonline, neerav, bookjewel, gonty.

Unfortunately, they didn’t include Kathryn Greenhill, an amazing librarian who is currently in the US and putting out some very helpful tweets from conferences she is attending while there. She is sirexkathryn on Twitter.

Other great Teacher-Librarians to follow include …..

Check out the list and see who else is there you might like to follow. I know that my professional learning has benefited from the generous nature of Librarians who are active on Twitter.

This shows that people are pretty serious about those lists and sensitive to who is included or not.
There were some mild protests from a few people on Twitter, i.e. from Shamsha here (RT means you repost a tweet, so @shamsha retweets my retweet of @philbradley’s tweet of the bestcollegesonline list) and from @BiteTheDust (here) regarding @laikas’  omission from the list. However, I’m sure there were many others studying the top 25, 50 or 100 lists with a frown. But wouldn’t any list look different?

Apparently it concerns the same bestcollegesonline.com-list as referred to by Lucacept.

Back in April there was also a Top 50 Librarian Blogs- list published at the getdegrees.com. This provoked a blogpost from the UK-blog Cultural Heritage ” Top 50 (insert topic of choice here). Quote:

The colleague who alerted me to this noted that all of the blogs listed were published by librarians in the US and wondered whether we should be doing our own list of top UK librarian blogs. Further, she wondered, if we did, who would we be putting at the top and why?

Who (are on the list)? and Why? Those are good questions!

This reminded me of a recent remark of @aarontay on Twitter, He sighed something like. “Now I’ve seen 3 of those list. Who makes those lists anyway?” That is a 3rd relevant question.

I couldn’t find @aarontay’s original Tweet (Booh!, these are not archived), but here is a message I found on FriendFeed:

Friendfeed not only keeps the messages but also shows the comments. Apparently Ellie (from Ellie <3 Libraries) found evidence that such sites were dodgy as @aarontay had suggested. Some quotes from her post:

Both this site (http://associatedegree.org) and Learn-gasm – who has the top 100 blogs post going around currently (www. bachelorsdegreeonline. com) are sites designed solely to earn revenue through click-throughs.

The “bachelorsdegreeonline” at the end is a tracking mechanism to allow collegedegrees.com to reward sites that send them visitors.
While all the schools linked to are legitimate schools, both are misleading sites since they only link to schools that offer an affiliate kickback. They also only link to forms to enter your contact information at third party sites, not to the actual school websites.

While the content of the top 100 blogs and 25 predictions lists is completely non-objectionable, the fact that librarians are taking these sites seriously is.

What the author is doing is trying to increase his traffic and SEO. He likely does some minimal investigation to determine what sites would have the biggest impact – so in that sense, the lists are probably somewhat representational of influential sites – like I said, the content isn’t the objectional part. He creates the page with the links to the 100 top whatever, then emails all of them to let them know they’re on the list. Every one of them that posts that they’ve made a top 100 list and links back to him increases his site’s page ranking. The more important your site is, the more it helps him, both in search engine algorithm terms (being linked to by someplace important counts for more than being linked to from less popular sites) and because it brings him more incoming traffic. Which also increases his site’s page ranking (and the chance of someone clicking through in a way that gets him paid).

…But, this particular little batch of sites that is currently targeting higher education – they are ones that are ostensibly trying to help people find colleges, choose degrees, etc., when in fact they are only linking to forms to enter your contact information for a small subset of online only colleges that offer affiliate linking programs.

…on the surface they seem related to education, some have .org addresses, but when we start looking at them critically they fail every test easily – no about page (or at least nothing informative on it), unauthored posts,  little to no original content. One of the main components of being a librarian is teaching people to think critically about information, so when we fail to do so ourselves I find it incredibly frustrating.

O.k. that hit the mark.

A good look at the sites that linked to my blog showed they were essentially the same as those mentioned by @aarontay and Ellie. With links to the same schools.

Vanity or naivety, I don’t know. I didn’t pay much attention, but I still (wanted to) quot(ed) them and didn’t doubt their intentions. Nor did I question Clinical Reader’s intentions at first (see previous post).

In some respect I really dislike to be so suspicious. But apparently you have to.

So, I hope you learned from this as well. Please be careful. Don’t link to such sites and/or remove the links from your blog.

“Vanity is the quicksand of reason” George Sand quotes (French Romantic writer, 1804-1876)

Top 50 Health 2.0 Blogs list

Friday Foolery [1]: On Homeopathy, Nutritionists and Toothiologists

Widely referred to on twitter, shown on the blog of drShock, and already cited in 2008…

But for those who do not know the Irish standup comedian Dara Ó Briain or his “Homeopathy & Nutritionists vs Real Science!” here is the video:

Some great oneliners:

• (Hé but) “Science knows it doesn’t know anything, otherwise it would stop … That doesn’t mean you can fill in the gaps with whatever fairytales”
  
• “Homeopathy is water… You can’t overdose on us, but you can fucking drown in it”
• “A dietitian is to a nutritionist as a dentist is to a toothiologist”

What does Dara Ó Briain mean with the latter?

Holford Watch, a (naughty) blog against about the “media nutritionist” Patrick Holford explained a while ago:

A ‘dietitian’ is a protected title, they need to be educated to a high level, etc., while anyone can call themselves a ‘nutritionist’. Dara drew a comparison with dentists: you have to meet certain, fairly stringent, criteria to call yourself a dentist or dietitian; anyone, though, can call themselves a toothiologist or nutritionist.

However, that Nutrionist is not a protected term is not entirely true. The title “nutritionist” is protected in Quebec, Alberta and Nova Scotia, as I learned from Wikipedia and Weighty Matters, the blog of Yoni Freedhoff, a Canadian Family doc and founder of Ottawa’s Bariatric Medical Institute.

Yoni is also not very fond of Nutritionists either. At his blog I found the (Funny Friday) video below about this profession. Made by Mitchell and Webb.

I also came across a video about homeopathy made by the same British comedians. Awesome.

Have a great weekend and be sure to take some Bach Flower Therapy to prevent your hangover. And remember, to take cocktails shaken not stirred with 1 ppm alcohol!

References:

Image by el patojo via Flickr

• http://www.shockmd.com/2009/08/18/on-homeopathy/
• http://holfordwatch.info/2008/12/23/dara-o-briain-a-dietitian-is-to-a-nutritionist-as-a-dentist-is-to-a-toothiologist/
• http://bmimedical.blogspot.com/2009/07/trip-to-nutritionist.html

More Friday Foolery:

• http://eagledawg.blogspot.com/search/label/friday%20foolery
• http://en.wordpress.com/tag/the-friday-post/
  ( from http://creakysites.wordpress.com/)

Dara Ó Briain: a dietitian is to a nutritionist as a dentist is to a toothiologis

Invisible Chronic Illness: Addison’s Disease

This week the Grand Round will be hosted by Invisible Illness Week, a blog dedicated to the National Invisible  Ilness Week, which runs September 14 -20, 2009. The purpose:

National Invisible Chronic Illness Awareness Week  (..) is a worldwide effort to bring together people who live with invisible chronic illness and those who love them. Organizations are encouraged to educate the general public, churches, healthcare professionals and government officials about the impact of living with a chronic illness that is not visually apparent.

The theme of the Grand Round is, not very surprisingly: Invisible chronic Illness.

I won’t write about this professionally -being a librarian-, but I will speak from my own experience.

As many of you know, I’ve the chronic illness Addison’s Disease. Not that I feel ill. It doesn’t affect me, really… Not anymore.. I think.

But many people with Addison’s disease suffer silently from this disease. And like many other diseases this disease is seldomly understood by partners, colleagues, friends ….. and doctors.

Before I explain more about Addison’s disease, first let me say that almost every disease is “invisible” to others. People can never fully understand what an illness means to someone suffering from it.

Cortisol, Image via Wikipedia

Patients with Addison’s disease make no or too small amounts of cortisol, a hormone made by the adrenal cortex. Cortisol has a bad reputation as the stress hormone among many people. It doesn’t deserve this reputation as this hormone is vital to life. Corticosteroids are involved in a wide range of physiologic systems such as stress response, immune response and regulation of inflammation, carbohydrate metabolism, protein catabolism, blood electrolyte levels, and behavior (Wikipedia)

Too much of this hormone causes Cushing’s disease, too little causes Addison’s disease. If you want to know what Cushing does to your body and mind, then please read the letter of Kate when she was first diagnosed with Cushing’s, at Robin’s “Survive the Journey”.

Here, I will confine myself to Addison’s disease. It is a very good example of an invisible yet serious disease.

There are 3 forms of Addison: primary (defect in the adrenal cortex itself, often also leading to a defect in aldosteron production), secondary Addison (by a defect in the hypophysis or hypothalamus) and iatrogenic Addison (caused by overtreatment with corticosteroids)

Here some reasons why the illness, although “invisible”, can have great impact on your live.

1. Diagnosis.

well-ville.com/images/adrenalQA2.jpg

Diagnosis is often a challenge, especially in patients with primary Addison, most of whom look healthy because of their pigmented skin. Nowadays, the main cause of primary Addison’s disease is immune destruction of the adrenal cortex. This has often a slow onset and in 50% of the patients the diagnosis takes more than 2, sometimes even more than 10 years [1]. 38% of the patients even experience vague complaints, that can later be attributed to Addison, during 11->30 years before diagnosis [1].

Before the diagnosis is made, people with Addison’s Disease often feel extremely tired and miserable. Even when the disease fully manifests itself the symptoms are largely vague and aspecific. The most common symptoms are fatigue, dizziness, muscle weakness, weight loss, difficulty in standing up, vomiting, anxiety, diarrhea, headache, sweating, changes in mood and personality, and joint and muscle pains. Often the symptoms aren’t taken seriously (enough) or the illness is mistaken for anorexia or depression.

My secondary Addison was the consequence of an injury to the pituitary gland as result of heavy blood loss during complicated childbirth (see previous post). The week between the cause and the diagnosis of the disease, was the most terrible week of my life. I felt awful, weak, (well I lost >3 liters of blood to start with), couldn’t give breast milk (no prolactin), and I disgusted food so much, you can’t imagine. I couldn’t get anything down my throat, only the look of it made me vomit. And I felt so bad not being able to care for the baby, but I just couldn’t. I couldn’t even stand for more then a few minutes, couldn’t walk.  And then there was unstoppable diarrhea, dizzyness, and speaking with double tongue. And practically no one took it seriously, not the gynaecologists, not the nurses, not the paediatricians, nor my friends or family.

But this was only one week. How would it have been if it durated 5 or 10 years?

2. Grieve and adaptation.

Once the disease is diagnosed you have to learn to live with a body that has let you down (grieve) and you have to learn to become confident again (adapt). You also have to find a new balance. I’ve lost a few hormones overnight (ACTH, cortisol, thyroid hormone, growth hormone, prolactin, gonadotrope hormones) and believe me, it took me a few years to feel reasonable normal again. It is quite surprising how badly I was informed. Very little information about the risk of an Addisonian crises, the dosing of cortisol under various conditions.
It was also confronting how little people wanted to know about the disease or what I had been through. Visitors after the birth wanted me to be euphoric and didn’t want me to go into any detail of what had happened. They cut me short by saying: “But you have a lovely baby”. Somebody cried that she didn’t want to hear it. So I stopped trying to speak about it.

I took no sick leave, immediately went back to work. My boss – a nephrologist, never asked after my health, not once.

As I said it took a few years before my “come-back”. I didn’t feel myself. It was as if I couldn’t think, as if my head was filled with cottonwool. Afterwards I think the main reason for improval was the reduction of the cortisol from 30 mg to 12.5 per day and the use of DHEAs plus that I regained confidence in myself.

3. Comorbidity

With cortisol I lost some other hormones which are also essential. Patients with primary Addison often miss aldosteron as well, which makes them more liable for an Addisonian crisis. Primary Addisonians may also have other immune diseases, like autoimmune thyroid disease, gonadal failure, type 1 diabetes and vitiligo.

4. Addisonian crisis

An addisonian crisis is an emergency situation, with possible fatal outcome, associated mainly with an acute deficiency of the glucocorticoid cortisol. This occurs in (extremely) stressful situations. Some Addisonpatients are more prone to it than others. You can -and should – take precautions, like wearing alert bracelets or necklaces, so that emergency personnel can identify adrenal insufficiency and provide stress doses of steroids in the event of trauma, surgery, or hospitalization.

Some Addisonians fear these crises so much that they dear not walk or run alone. Many Addison patients don’t go to a country far away, some don’t even pass the border (and you know the Netherlands aren’t that big).

5. Addison’s disease can be treated but not cured.

Addison patients are treated with corticosteroids like hydrocortisone and are substituted with other hormones that they may lack. Without treatment, the disease is lethal, with treatment the disease is not cured. I do feel all right now, but many of my fellow patients don’t. I think that the following excerpt from a Seminar of Wiebke Arlt and Bruno Allolio about adrenal insufficiency [2] makes this very clear.

Despite adequate glucocorticoid and mineralocorticoid replacement, health-related quality of life is greatly impaired in patients with primary and secondary adrenal insufficiency. Predominant complaints are fatigue, lack of energy, depression, and anxiety. In addition, affected women frequently complain about impaired libido. In a survey of 91 individuals, 50% of patients with primary adrenal insufficiency considered themselves unfit to work and 30% needed household help. In another survey of 88 individuals the number of patients who received disablility pensions was two to three times higher than in the general population. The adverse effect of chronic adrenal insufficiency on health-related quality of life is comparable to that of congestive heart failure. However, fine-tuning of glucocorticoid replacement leaves only a narrow margin for improvement, and changes in timing or dose do not result in improved wellbeing.

References

1. Zelissen PM. Addison patients in the Netherlands: medical report of the survey. The Hague: Dutch Addison Society, 1994.
2. Wiebke Arlt, Bruno Allolio. Adrenal Insufficiency, Lancet 2003; 361: 1881–93 , full text on http://www.addisonssupport.com/Documentation/adrenal-insufficiency-2003.pdf

Earlier posts on the subject:

• http://laikaspoetnik.wordpress.com/2008/10/19/changing-care-for-addison-patients/
• http://laikaspoetnik.wordpress.com/2008/10/27/the-importance-of-early-intervention-in-an-addisonian-crisis/

Related articles by Zemanta

• Multimorbidity, and why it’s difficult to care for complex medical patients (kevinmd.com)
• Dear Family and Friends…. (survivethejourney.blogspot.com)
• Please Don’t Ask Me ‘How are You?’ (somebodyhealme.dianalee.net)

Biomedical Journals on Twitter

Because of my vacation I was unable to publish about the list of Medical Journals on Twitter that I had initiated in the form of a spreadsheet.

Meanwhile this list has been widely covered in the medical blogosphere, i.e. here, here (nature blogs, yeah), here, here and here, (without -correct- attribution) and here (Ves Dimov) and here (Andrew Spong) (with attribution). And possibly many more.

Do I have anything to add? No not really.

Nevertheless, I would like to point my readers who may not be yet aware of this list. It is open to anybody to edit. Thus if you know of a medical journal on Twitter that is not included, then please feel free to add it to the spreadsheet (if you have Google mail) or ask me to do it for you.

For those who are not used to editing Google spreadsheets, please follow the detailed description of Andrew Spong at his blog.

The reason why I started this spreadsheet was that Walter van den Broek (drshock) asked me “how to find which medical journals on Twitter (see part of the Twitter discussion rescued from Friendfeed (tweets get lost after a few days).

I made a spreadsheet, and asked input from the twitterverse: the easiest and most efficient way to compile a list. There were many initial suggestions of @artadobbs: (see @UCONNHealthLib). She already followed many e-resources updates, as a service for UCONN Health Library users. Ves Dimov (@drves) also had great input. The other editors have added their names on the spreadsheet (and I have added mine too now ). Thanks to all! With Ves I’m truly impressed of how well Google Spreadsheets work as a structured wiki.

Here is a Figure of part of the list (click to enlarge), the actual spreadsheet can be found here.

Yesterday drshock asked me “Any pharmaceutical drug companies using twitter?” so the Medical Journal spreadsheet may not be my last one.

Twitter discussion. Read from down up

Clinical Reader, a Fancy New Aggregator – But All is not Gold that Glitters

Before I went on vacation (July 14th) I started a blogpost about Clinical Reader, a new aggregator. However, a Twitter riot -started July 13th- drastically changed my view of Clinical reader and I decided to await further developments till my return. Alas, things have only worsened.

The adapted blogpost consists of two parts: a neutral look from the outside (original draft) and a look behind the scenes: how social media and web 2.0 tools should not be used.

I submit this post to the Grand Rounds, not only to inform you about a potential fancy aggregator, but also to warn potential users to “look before you leap”.

Please note that the figures shown in the first part are all screendumps taken at July 13th or earlier and might no longer exist in this form (note added after publication, as all sentences in this color)

——————————————————————————————————

Earlier this year (see post) I compared PeRSSonalized Medicine, a new aggregator, created by Bertalan Meskó to various other aggregators: Amedeo, MedWorm and Libworm, Netvibes, I-Google and RSS-Readers, (i.e.) Google Reader.

Most of these readers (can) track medical journals or news, some (can) also track blog posts and web 2.0 tools (like PeRSSonalized Medicine and MedWorm).  PeRSSonalized Medicine excels by the input from the readers (doctors, health 2.0 people and patients), Amadeo and especially Medworm have large lists of journals to choose from. All these aggregators can be personalized. Of course Netvibes, I-Google and RSS-Readers give the utmost freedom in compiling list feeds, but one first has to learn how to use them. And although it is not difficult, it means a hurdle to many.

June 29th, a new aggregator was launched, Clinical Reader, specifically designed for busy clinicians to reduce the information overload.

1. From the Mission Statement:

We are building a user-friendly platform that will enable medical professionals around the world the ability to easily interact with the latest developments in their respective specialties. Our aim is to bring academic content together and create a semantic digital medical library.

——————

2. What it is and what it isn’t.

Clinical Reader is website that syndicates content via RSS/Atom (aggregator), enabling busy clinicians to easily browse top medical journals, health news sources and multimedia without having a clue what RSS is about (and for free). The same is true for other aggregators discussed previously: PeRSSonalized Medicine, Amedeo and MedWorm. In fact the presentation of the feeds looks pretty similar (see Fig. for comparison of Clinical Reader and Perssonalized Medicine). Disadvantage of these kind of aggregators is that only the first items are shown, and as these often are editorials, comments, correspondence and news, the physician still has to follow the link to the journal to see most of the (true) articles.

In contrast to the aforementioned  services, the “RSS-feeds” of Clinical Reader cannot be personalized (a personal selection of journals). There is however the possibility to select an entire clinical section, each with its own selection of specialist journals. And according to Rashada Henry, associate editor of ClinicalReader.com (commenting on Bertalan Mesko’s post), open or closed personal pages may become an option in due course.

3. What’s new?

As said, the idea isn’t new, Clinical Reader is an old concept in a new guise. But what a guise. It is a glimmering site with prints of the main journals on the home page. It has the appearance of an i-pod touch: you can scroll the sources with your mouse and click the ones you would like to read. Wow, I was immediately taken by it.

4. Coverage

The emphasis is on medical journals and news. But there is also a page for with a selection of 14 Medical Blogs. There are also plans to include top Twitter doctors worth following (spreadsheet prepared by Ves Dimov, MD), for nurses, open access … and top medical librarians blogs (worth following for doctors). Following Ves’ example I made a spreadsheet of useful medical librarian blogs, open to editing here

The original spreadsheet looked like this:

The preview of the medical librarian page (how it would look when incorporated) looked like this.

The address was: http://medical-librarians.clinicalreader.com/phase3.php - but when I came back the link was dead?!….

The other side of the coin

Apart from the fact that the site was not as revolutionary as suggested, there were some basic things about the site that were of some concern. The “About us” section contains no names, picture, verifiable info, etc. It only says: “Clinical Reader was brought to life in 2009 by a junior doctor and a small group of forward thinking young tech programmers spread across London and Toronto.” Furthermore I wondered whether NLM would ever give stars to commercial tools like this. I wondered, but no more than that….

1. Starry ethics fail
Nikki Dettmar, a medical librarian at the National Network of Libraries of Medicine (NNLM) did take a closer look. In a blogpost Starry ethics fail she says that:

it is with concern that I’ve heard about some of my colleagues promoting and collaborating with the newly launched company, Clinical Reader.

Why? (red scrawl emphasis mine)

This above-the-page-fold graphic is intentional (not accidental, this is clear marketing intent to lend quick visual credibility to the organization) and currently displayed everywhere (homepage, sections pages, multimedia page, the newsletter, etc.) throughout the resource.

It is bogus as far as the National Library of Medicine (NLM) is concerned since the U.S. Government doesn’t endorse or grant 5 stars to anything. The NLM Copyright Information page offers more elaboration, ….

Later Ben Goldacre (MD, columnist for the Guardian) concludes in a Twitter discussion regarding the endorsement by the Guardian (source http://eagledawg.blogspot.com/2009/07/gratitude.html).

bengoldacre @ClinicalReader so youre supported by the guardian in the sense that you went to an event they organised and some people gave you sm advice? 2 weeks, 5 days ago from TweetDeck in reply to ClinicalReader

2. Infringement of copyright

Nikki was also the first to notice the use of two copyrighted, unattributed images:

Clinical Reader also currently uses two copyrighted images on their Partners (specific original source, copyright notice at bottom) and Advertising pages (from somewhere on Signalnoise). A ‘credit’ link to a source doesn’t honor an image copyright. (….) Commercial organizations can well afford to purchase or design their own graphics.

In a later post, Nikki also showed that the multimedia wrongfully used SpringerImages, that must not be (…) used for commercial purpose  including the placement or upload of the Licensed Content on a commercial entity’s internet website.

Peter Murray twittered to @allan marks, co-founder of Clinical Reader:

@allan_marks It seems your Clinical Reader radiology image (http://bit.ly/3YbLa) was swiped from a Flickr user http://bit.ly/3XXKGm

In addition, the logo that was used by Clinical Reader to indicate the untangling of a maze of information (that I copied in my original draft above), was taken without permission from the website of FeedStitch where it was created by their designer Owen Shifflett. (see discussion).

You kind of wonder what wasn’t copied.

3. Threat to Nikki (Eagledawg) via Twitter

For me the most astonishing event was the immature “response” of Clinical Reader to Nikki after publishing her first post with appropriate critique. It was in the from of a real threat.

From several sources I now  understand Clinical Reader also reacted kind of offensive to other librarians, including @DataG and lukelibrarian. One was warned “I will contact Twitter and have your accounts shut down. Stick with the real deal – EBSCO, Ovid .. etc” or something to that effect. @DataG (Murray) also found a version of a Clinical Reader newsletter, still catched by the Google search engine entitled: “wave goodbye to the library journal shelf”, which was later withdrawn. (source: Murray on Twitter as @DataGhis blog dltj.org (6)) and

I immediately responded (while packing) to the initial threat and so did dozens of other medical librarians. Mostly on Twitter and Friendfeed, but also via their blogs (see below and Nikki’s blog). Some also retracted their initial support (i.e. see this mail of  Connie Schardt, who like many of us -including me- was “temporarily dazzled by the flashy display and ease of use of the product.”)

4. Change of Twitter-accounts, deleting tweets

Quite confusingly Twitter-accounts have been changed and deleted. First initials appeared after tweets to designate the person who tweeted for @clinicalreader, which I thought was a good thing. I followed @clinicalreader, but now the account was discontinued. The archive was kept at @clinical_tweets, which vanished as well. Now there is @clinical_reader, that states that tweeting has not really begun?? The only Clinical Reader account I know of is that of allan_marks. ALL previous tweets have been deleted. What remains are dm’s (direct messages) and tweets that are preserved by services like QuoteURL.
(for a detailed account of the switching of the original Twitter account’s name ‘at the speed of light’ see this blogpost of pegasuslibrarian)

It is all very confusing. Why would one do that other to conceal what has been said?

One salient detail. At their website Clinicalreader still refers to @clinicalreader, which is taken over by someone taking the opportunity to register the account when it moved to @clinical_tweets

5. More lying

There are several examples of making up retweets (quoting someone), see here (@ClinicalReader “I didn’t RT anything from y’all. Y’all aren’t very good at the whole social media thing, huh?”-David Rothman) and here (@ClinicalReader – “Would you mind not attributing fabricated quotes to me please? I never said this: http://tr.im/sCFb #ClinicalCheater“) (source: 6)

6. Denial

The behaviors of the ones in charge are so immature. It’s really unbelievable. You always have to take critique seriously, and if you choose to use social media and make a mistake, than apologize openly (see the blogpost of Peter Murray below, 7).

Look at this discussion with Ben Goldacre (thanks Nikki). It is really ridiculous, QuoteURL: one, two, three, and four. Clinical Reader is playing dumb.

I might not have been exhaustive, but I know enough for the moment. Also in my eyes, Clinical Reader has lost all its credibility.

In contrast to the massive protest of Medical Librarians only one doctor (Ben Goldacre) took a stand against Clinical Reader (see here).

Clinical Reader = zero stars: non-existent endorsements, threaten blogger, nasty and silly, avoid! http://tr.im/sdJA

The others remained erily silent. Why?

——————————

More extensive reading:

1. http://eagledawg.blogspot.com/2009/07/clinical-reader-starry-ethics-fail.html
2. http://eagledawg.blogspot.com/2009/07/gratitude.html
3. http://stevelawson.name/seealso/archives/2009/07/clinical_reader_from_zero_to_negative_sixty_with_one_bogus_threat.html
4. http://healthinformaticist.wordpress.com/2009/07/14/clinical-reader-malicious-or-just-stupid/
5. http://davidrothman.net/2009/07/14/watch-nikki-pound-clinical-reader/
6. http://dltj.org/article/clinical-reader-background/ (in depth coverage by @dataG or Peter Murray)
7. http://dltj.org/article/learning-from-clinical-reader/ (excellent advice)
8. http://pegasuslibrarian.blogspot.com/2009/07/best-bad-marketing-ever.html
9. http://pegasuslibrarian.blogspot.com/2009/07/clinical-reader-train-wreck-just-keeps.html (detailed coverage of deleting and changing accounts) (8-9 added after comment Steve Lawson)
10. Friendfeed discussions: http://friendfeed.com/search?q=%22clinical+reader%22

Related articles by Zemanta

• How to make medical RSS aggregators better (casesblog.blogspot.com)
• News, Medicine 2.0, Current Awareness: The debut of Clinical Reader (creakysites.wordpress.com)
• Health News of the Day (part 2) (casesblog.blogspot.com)

Does the insulin Lantus (glargine) cause cancer?

Last week my eyes were caught by a post of Kevin MD at his blog entitled

“Does insulin cause cancer, and should you stop taking Lantus?”.

Kevin linked to the blog of Dr. Mintz, a board-certified internist, who had a strong opinion on this. Dr. Mintz  posted 3 blog articles on the matter, entitled: A new problem with insulin: cancer (June 29), Lantus causes cancer! Why doesn’t anyone seem to care? (July 1) and Lantus and cancer – A closer look is not reassuring (July 2). Dr. Mintz’s conclusion was based on 4 recent publications in diabetologica (1-4)

Alarming. Especially since Dr. Mintz is an expert, often prescribing insulins. Also, I’m suspicious  about any substance with an IGF (insulin growh factor)-like action, because I know from previous work in the lab that some tumor cells (i.e. prostate and breast cancer) thrive on IGF. On the other hand there have been several examples in the past, where retrospective studies initially “showed” drugs to cause cancer, which have later been invalidated by more thorough studies (i.e. statins).

“Lantus causing cancer” is a serious allegation, that might cause panic in those many diabetic patients using Lantus. Are fears justified and should Lantus be “banned”?

After reading the publications (1-5), news articles and some blogposts (i.e. a balanced blogpost at Diabetesmine, a blog of a patient) and a very thorough blogpost in Dutch), I rather conclude that the recent publications in Diabetologica, dr Mintz* refers to, do not support a causal role for Lantus in cancer. However, they still give reason for some serious concern in a subset of patients (explained below).

Now what is Lantus and what have preclinical and clinical trials revealed?

Insulin glargine (Lantus) is the first of the long-acting insulin analogues, introduced in 2001. This analogue is a so called designer molecule made by the recombinant DNA technique. It has three amino-acid substitutions, that cause a lower solubility of the insulin molecule  at the injection site, forming a depot from which insulin is slowly released (9, 10).  The advantage is that stable 24hr blood glucose concentrations are reached by a once daily subcutaneous injection without a blood glucose peak upon injection as seen with the short acting insulins. However, insulin replacement remains far from ‘natural’, “the insulin is injected in the wrong site (subcutaneously instead of intraportally), in shots (instead of a continuous low secretion associated with a prompt release in response to a meal, with a total lack of the physiological pulsatile secretion”).Insulins not only bind to the insulin receptor, leading to the intended glucose lowering, but also to the insulin growth factor receptor (IGF-R), which mainly induces cell proliferation. Importantly, glargine has a much higher affinity for both receptors than insulin. This can lead to a sustained activation of the IGF-receptor, resulting in enhanced cell growth.

Indeed, Preclinical Research has shown that only glargine showed a significantly higher proliferative effect on breast cancer cells compared to regular insulin among a panel of short- or long-acting insulin analogues (6) . Futhermore,  insulin analogues display IGF-I-like mitogenic and anti-apoptotic activities in cultured cancer cells (thus they stimulate cell division and prevent programmed cell death of cancer cells (8).

Experimental animal studies haven’t shown a tumorigenic or teratogenic potential of glargine, except for histiocytomas in male rat (Product information Lantus). Such studies don not examine tumor promoting properties (see below)

Clinical Studies (published in Diabetologica 2009)

Based on the insulin analogue characteristics and the in vitro results there was already concern about possible increased cancer risk of glargine. But the concern was boosted by a prominent diabetes researcher forecasting an “earthquake” event compromising the safety profile of Lantus,  and the subsequent publication of five studies in  the European journal Diabetologia, the Journal of the EASD (European Association for the of Study of Diabetes).

Except for one small study, which was a post-hoc analysis of a randomized study by Sanofi-Aventis itself [5], all other studies were retrospective. The Sanofi study didn’t find an increase in cancer, but given its small size (1000 patients), it is not  convincing enough to exclude a higher risk of cancer.

The first, German, study [1] was submitted a year ago, but because of the uncertainties and the expected high impact, researchers from other European countries were asked to replicate the findings before announcing them formally. Studies were carried out using databases from Sweden, Scotland, and the UK.

The German study (n= 127,031 patients, exclusively on human insulin or on one type of insulin analogues (lispro, aspart or glargine; glargine: n=23,855 ; mean follow-up time 1.63 years) found an overall increase in cancers, independent of the insulin used. After statistical modeling, a dose-dependent increase in cancer risk was found for treatment with glargine compared with human insulin (p<0.0001): with an adjusted HR of 1.31 (95% CI 1.20 to 1.42) for a daily dose of 50 IU, meaning that out of every 100 people who used Lantus insulin one additional person was diagnosed with cancer over the study period. The baseline characteristics were different between the groups. It was not possible to break the analysis down to type of cancer.

The Swedish and Scottish studies [2-3], both based on matching of national databases for cancer and diabetes, showed no overall increase in cancer, but an increased incidence rate of breast cancer in women using insulin glargine monotherapy (no other types of insulin or combination) as compared with women using types of insulin other than insulin glargine. Although this can be caused by chance, it is striking that both studies had a similar outcome. The enhanced risk was abolished in patients using glargine together with other insulins. These were mostly younger patients with diabetes type 1.

The fourth smaller study [4] found that patients on insulin were more likely to develop solid cancers than those on metformin, and combination with metformin abolished most of this excess risk. No harmful effect on cancer development, including breast cancer were observed: there was only a higher risk versus metformin, which has known anti-cancer properties.

In Conclusion:

• Diabetes patients using insulin should never stop using insulin, as this is very dangerous.
• Long term studies have shown ‘natural’ insulins to be effective and safe.
• The reported studies do NOT show that Lantus can CAUSE cancer. Moreover, the time span (less than two years) is too short for any drug to cause cancer.
• The enhanced risk was only observed for breast cancer (2-3) and/or if Lantus was used on its own, thus not with other insulins (1-3) or metformin (4). The association was clearest in type 2 diabetes patients. It is not clear whether the association reflects the effects of Lantus or the inherent differences between for instance diabetes I/younger  and diabetes II/older patients (also because the latter often use Lantus alone ). In addition, it should be noticed that diabetes patients already have a higher cancer risk (possibly related to overweight, often seen in type 2 diabetes)
• At the most Lantus might promote existing cancer to grow and divide. Lantus might for instance provide a survival advantage of percancerous or cancerous cells. This would be consistent with its in vitro mitogenic effect on breast cancer cells.
• On the basis of the current evidence there is no need to switch to other treatments when a long acting insulin is necessary to keep blood glucose under control. However, Lantus treatment could be reconsidered in diabetes II patients, with good control of blood glucose, for whom a clear benefit of Lantus has not been shown or  in patients with a higher cancer risk.
• Levamir is considered as a good alternative by some, because this long acting insulin analogue lacks the greater affinity for IGF-R. However, absence of proof is no proof of absence: Levamir has only recently been introduced, it has not been included in these studies and clinical experience is limited.
• More conclusive evidence is to be expected from analysis of the large combined analysis of the databases available worldwide, by EASD and sanofi-aventis. Results are expected within a few months.

Video-editorials featuring Prof. Ulf Smith, Director EASD, and Prof Edwin Gale, editor-in-chief Diabetologica (part 1 and 2)

*dr Mintz reformulated this in his last post, where he stated that “it is unlikely that Lantus actually causes cancer alone, because it takes years to develop most cancers. However, it is more likely that Lantus causes existing cells to grow and divide more rapidly.“

Journal Articles

1. Hemkens, L., Grouven, U., Bender, R., Günster, C., Gutschmidt, S., Selke, G., & Sawicki, P. (2009). Risk of malignancies in patients with diabetes treated with human insulin or insulin analogues: a cohort study Diabetologia DOI: 10.1007/s00125-009-1418-4 (Free full text)
   
2. Jonasson, J.M., Ljung, R, Talbäck, M, Haglund, B, Gudbjörnsdòttir, S, & Steineck, G (2009). Insulin glargine use and short-term incidence of malignancies—a population-based follow-up study in Sweden Diabetologia (Free full text)
   
3. SDRN Epidemiology Group (2009). Use of insulin glargine and cancer incidence in Scotland: A study from the Scottish Diabetes Research Network Epidemiology Group Diabetologia (Free full text)
4. Currie, C., Poole, C., & Gale, E. (2009). The influence of glucose-lowering therapies on cancer risk in type 2 diabetes Diabetologia DOI: 10.1007/s00125-009-1440-6 (Free full text)
   
5. Smith, U., & Gale, E. A. M. (2009). Does diabetes therapy influence the risk of cancer? Diabetologia (Free full text)
6. Mayer D, Shukla A, Enzmann H (2008) Proliferative effects of insulin analogues on mammary epithelial cells. Arch Physiol Biochem 114: 38-44
7. Arch Physion Biochem (2008), vol 1141 (1) is entirely dedicated to “Insulin and Cancer”, i.e. see editorial of P. Lefèbvre: Insulin and cancer: Should one worry?” p. 1-2
8. Weinstein D, Simon M, Yehezkel E, Laron Z, Werner H (2009) Insulin analogues display IGF-I-like mitogenic and anti-apoptotic activities in cultured cancer cells. Diabetes Metab Res Rev 25: 41-49 (PubMed record)

Information about Lantus

9.  http://content.nejm.org/cgi/content/extract/352/2/174

10. http://products.sanofi-aventis.us/lantus/lantus.html

11. http://www.informapharmascience.com/doi/abs/10.1517/14656566.2.11.1891?journalCode=eop

#CECEM Bridging the Gap between Evidence Based Practice and Practice Based Evidence

A very interesting presentation at the CECEM was given by the organizer of this continental Cochrane meeting, Rob de Bie. De Bie is Professor of Physiotherapy Research and director of Education of the Faculty of Health within the dept. of Epidemiology of the Maastricht University. He is both a certified physiotherapist and an epidemiologist. Luckily he kept the epidemiologic theory to a minimum. In fact he is a very engaging speaker who keeps your attention to the end.

Guidelines

While guidelines were already present in the Middle Ages in the form of formalized treatment of daily practice, more recently clinical guidelines have emerged. These are systematically developed statements which assists clinicians and patients in making decisions about appropriate treatement for specific conditions.

Currently, there are 3 kinds of guidelines, each with its own shortcomings.

• Consensus based. Consensus may be largely influenced by group dynamics
  Consensus = non-sensus and Consensus guidelines are guidelies.
• Expert based. Might be even worse than consensus. It can have all kind of biases, like expert and opinion bias or external financing.
• Evidence based. Guideline recommendations are based on best available evidence, deals with specific interventions for specific populations and are based on a systematic approach.

The quality of Evidence Based Guidelines depends on whether the evidence is good enough, transparent, credible, available, applied and not ‘muddled’ by health care insurers.
It is good to realize that some trials are never done, for instance because of ethical considerations. It is also true that only part of what you read (in the conclusions) has actually be done and some trials are republished several times, each time with a better outcome…

Systematic reviews and qualitatively good trials that don’t give answers.

Next Rob showed us the results of a study ( Jadad and McQuay in J. Clin. Epidemiol. ,1996) with efficacy as stated in the review plotted on the X-axis and the Quality score on the Y-axis. Surprisingly meta-analysis of high quality were less likely to produce positive results. Similar results were also obtained by Suttorp et al in 2006. (see Figure below)

Photo made by Chris Mavergames

There may be several reasons why good trials not always give good answers. Well known reasons are  the lack of randomization or blinding. However Rob focused on a less obvious reason. Despite its high level of evidence, a Randomized Controlled Trial (RCT) may not always be suitable to provide good answers applicable to all patients, because RCT’s often fail to reflect the true clinical practice. Often, the inclusion of patients in RCT’s is selective: middle-aged men with exclusion of co-morbidity. Whereas co-morbidity occurs in > 20% of the people of 60 years and older and in >40% of the people of 80 years and older (André Knottnerus in his speech).

Usefulness of a Nested Trial Cohort Study coupled to an EHR to study interventions.

Next, Rob showed that a nested Trial cohort study can be useful to study the effectiveness of  interventions. He used this in conjunction with an EHR (electronic health record), which could be accessed by practitioner and patient.

One of the diseases studied in this way, was Intermittent Claudication. Most commonly Intermittent Claudication is a manifestation of  peripheral arterial disease in the legs, causing pain and cramps in the legs while walking (hence the name). The mortality is high: the 5 year mortality rates are in between those of colorectal cancer and Non-Hodgkin Lymphoma. This is related to the underlying atherosclerosis.

There are several risk factors, some of which cannot be modified, like hereditary factors, age and gender. Other factors, like smoking, diet, physical inactivity and obesity can be tackled. These factors are interrelated.

Rob showed that, whereas there may be an overall null effect of exercise in the whole population, the effect may differ per subgroup.

• Patients with mild disease and no co-morbidity may directly benefit from exercise-therapy (blue area).
• Exercise has no effect on smokers, probably because smoking is the main causative factor.
• People with unstable diabetes first show an improvement, which stabilized after a few weeks due to hypo- or hyperglycaemia induced by the exercise,
• A similar effect is seen in COPD patients, the exercise becoming less effective because the patients become short of breath.

It is important to first regulate diabetes or COPD before continuing the exercise therapy. By individually optimizing the intervention(s) a far greater overall effect is achieved: 191% improval in the maximal (pain-free) walking distance compared to for instance <35% according to a Cochrane Systematic Review (2007).

Another striking effect: exercise therapy affects some of the prognostic factors: whereas there is no effect on BMI (this stays an important risk factor), age and diabetes become less important risk factors.

Because guidelines are quickly outdated, the findings are directly implemented in the existing guidelines.

Another astonishing fact: the physiotherapists pay for the system, not the patient nor the government.

More information can be found on https://www.cebp.nl/. Although the presentation is not (yet?) available on the net, I found a comparable presentation here.

** (2009-06-15) Good news: the program and all presentations can now be viewed at: https://www.cebp.nl/?NODE=239

LOCA Congress for Interns – LOCA co-assistenten congres

Last Sunday I was an invited speaker at a national congress for interns, the LOCA congress. LOCA stands for “Landelijk Overleg Co-Assistenten”.

This congress has been initiated to facilitate the contact between interns of all Dutch universities and to cover in depth subjects that usually don’t get much attention.

The LOCA congress offered a diverse program, varying from “minimal invasive and maximal effective surgery”, “memory training” and “a dirty mind is a joy forever”. You can see the program here (Saturday; Sunday).

The previous event I gave a Search Workshop, this time the subject was “Medicine 2.0″.

I didn’t realize in advance that this wasn’t a convenient day. First it was Mother’s day. My children weren’t pleased that I wouldn’t be around. Furthermore I had to prepare an Evidence Based Searching day the following Monday and several other workshops that week. Still, Sunday morning we spent together in the garden eating home made smoothies and muffins that my eldest daughter L made, with on them in colors: “Mama blog”, “L X M”, “Laika twitter”, “Success”,  etcetera, which illustrates how they see me now.

Despite  that I had 40 min. instead of the expected 60 min., and just about half of the workshop subscribers (it was a very sunny day) showed up, I found it a pleasant workshop. Mostly because the audience was very interested and interactive. Within those 40 minutes, however, I could only touch upon some aspects, giving most emphasis to the web 2.0 tools which can be used in daily practice by medical professionals to find information (social networking sites, RSS also in Pubmed, personalized home pages, blogs and wiki’s)

40 minutes is short and I promised the interns to provide them with some information afterwards.

I’m too busy at the moment with my regular job, but I expect that the promised information will be available within 1-2 weeks at:

• This blog
• Slideshare
• A wiki created for this occasion: http://medicine20.wetpaint.com/

But I won’t withhold a series of tweets (Twitter messages)  specifically directed to the interns of this workshop. You can view the tweets labeled with #MOVIR, here at Visibletweets. They have been tweeted by doctors, a patient, a nurse and a physiotherapist. Please see them all, the first tweets are shown last.

Merck’s Ghostwriters, Haunted Papers and Fake Elsevier Journals

What is the purpose of publications? (…) The purpose of data is to support, directly or indirectly, the marketing of our product.” [1, 2]

It is well known that studies with significant positive results are easier to find than those with ‘negative’ results. This so called publication bias can arise from the tendency to submit or accept manuscripts that have a positive rather than a negative or neutral result. It can also be the consequence of deliberately overemphasizing positive results or even worse: the results can be “embellished”, (partly) faked or negative results can be “hidden“

In fact, pharma-sponsored trials rarely produce results that are unfavorable to the companies’ products [3, 4, 5]. For instance, none of the published 56 trials of  NSAIDs in arthritis identified by Rochon et al in 1994 [3] had outcomes that were unfavorable to the company that sponsored the trials. Another study showed that studies funded by a company were four times more likely to have results favorable to the company than studies funded from other sources [1, 4]

Ghostwriters, who write articles that are officially credited to another person, are part of the tactics. Ghostwriters may be hired by companies to write articles for medical journals that appear under the names of scientists who didn’t substantially contribute to the paper. In extreme cases pharmaceutical companies and their agents control or shape multiple steps in the research, analysis, writing, and publication of articles. This so called ghost management can be outsourced to MECC’s, medical education and communication companies.

All the above approaches, -and more- are said to have been used by Merck to sell their Vioxx (rofecoxib) pills, the blockbusting painkiller, that could cause heart attacks and strokes [6]. Merck knew, but didn’t disclose (all) these adverse effects*. Later it appeared that many Vioxx- manuscripts were prepared by sponsor employees (ghost writers), but attributed to academic investigators who did not always disclose industry financial support. Distancing himself from one such article, first author Jeffrey Lisse said in an interview that:

“Merck designed the trial, paid for the trial, ran the trial…Merck came to me after the study was completed and said, ‘We want your help to work on the paper.’ The initial paper was written at Merck, and then it was sent to me for editing” [NY-times -[2005].

And although Merck has “voluntarily” withdrawn Vioxx from the market in 2004 and has agreed to pay billions to settle lawsuits in the US, the Vioxx-ghost keeps hunting Merck (and us).

In a few weeks 3 news-items have crossed my eyes.

A. The Guardian ( May 4) mentioned that Merck refused to compensate hundreds of Britons who have suffered serious cardiovascular  problems while on Vioxx.  Ministers apparently backed down from supporting these people after lobbying by the company.

B. May 1st NewsInferno com reported that Merck was accused of hiring a ghostwriter for a Circulation paper (2001) to minimize issues linked to Vioxx’s safety, while the well known cardiologist Dr. Marvin Konstam agreed to act as lead author. This was revealed by Prof. Jelinek during an Australian lawsuit against Merck.

C. The above news story was covered by Australian Newspapers including “the Australian“. In its article on the lawsuit, the Australian also devotes one sentence to a fake Elsevier/Merck journal. It says:

“The drug company also allegedly produced an entire journal — called The Australasian Journal of Bone and Joint Medicine — and passed it off as an independent peer review publication.”

It is this sentence that has caused a tsunami, starting with the Scientist, via blog.bioethics.net to  many other blogs of researchers, publishers, librarians and to newspapers. “Everybody” was alarmed.

What were the allegations? Are they all true? Who is to blame? Merck or Elsevier? Most importantly: is it an isolated incidence, something completely new and what is its impact?

Points addressed by the Scientist (mainly based on interviews, i.e. with George Jelinek)

1. Australasian Journal of Bone and Joint Medicine, is published by Exerpta Medica, a division of Elsevier
2. This Journal is not indexed in the MEDLINE database and has no website.
3. It had the looks of a peer-reviewed medical journal, but contained only reprinted or summarized articles
4. Most of the articles presented data favorable to the Merck products Fosamax (for osteoporosis) and Vioxx.
5. So called “review” articles only cited one or two references. Even a meta-analysis contained 2 references, one of which referring to a real meta-analysis.
6. The articles are “simply a summary of already published articles”
7. There are several ads for Fosamax and Vioxx.
8. It is unclear who wrote the editorials
9. One member of the editorial board, Peter Brooks said that he didn’t ever get manuscripts to review while on the board. Neither was he paid for his role.
10. There is no disclosure of company sponsorship.
11. Merck paid an undisclosed sum to Elsevier to produce several volumes (confirmed by Elsevier).

According to a statement of Merck (see pdf on their website):

“The Australasian Journal of Bone and Joint Medicine (..) was published by the medical publishing company Elsevier. Merck Sharp & Dohme Australia understood that Elsevier envisaged the complimentary publication would draw on the vast resources of Elsevier, publishers of many leading peer-reviewed journals including Lancet, Bone, Joint Bone Spine and others, to deliver novel and timely full-text articles and abstracts to physicians.”

In the same PDF Merck states that “ghostwriting” allegations concerning the 2001 Circulation paper about VIOXX [item B] are false and that professor Jelinek has witdrawn his accusation under cross examination. According to Merck, the lead author Dr. Marvin Konstam, was in fact very much involved in the study. Indeed, according to the Heartwire, Konstam maintained he acted properly. He  takes full responsibility for everything he has published.

Elsevier acknowledged the concern that the journal didn’t have the appropriate disclosures,” and although they said they had no plans in looking further into the matter, Elsevier disclosed today that in total 6 such fake Australasian Journals were produced (see Scientist).

Now what? An isolated blunder by staff of the Australian Branche of Elsevier who published a fake peer review while Elsevier headquartes and Merck were totally unaware?

First, although I don’t want to triviliaze the affair, obviously this Journal does not pretend to be a peer reviewed paper (i.e. see this pdf, obtained by the Scientist). Any doctor who even considers it to be a peer reviewed paper must have very little experience with critically reading of peer reviewed papers. It is clear from the start that all articles are just copied from other (Elsevier) Journals, the citations are given, articles are classed to type (in black boxes at the tope) and the so called meta-analyses just describes another meta-analysis, which is cited.

The editorial board is called “Honorary”. The advertorials and the repeated mentioning of Merck drugs makes it immediately clear that this Journal is just a so-called throwaway. True, it should have been disclosed at the front page and the Journal’s name and lay-out might suggest otherwise at first glance. And to me as a librarian it is particularly strange that there was an annual subscription for institutions of $250. Throw-aways are usually for free. Furthermore it is not included in Science Direct nor the usual bibliographic databases.

As a matter of fact, this Journal is what you would expect from an “Excerpta Medica Journal”: an excerpt of various articles. At least that’s what the name suggests and that’s what I remember from the old fashioned Excerpta Medica abstract journals I browsed as a post-doc.

But it is remarkable that “the reliable and authorative” Elsevier, publisher of journals like the Lancet, lends itself to a biased publication of articles that only serve as promotional material? Surely this is an exception?

Well, whereas Elsevier itself has dismayed the Lancet by sponsoring one of the largest military exhibitions in the world (CMAJ 2007), its medical and health sciences division Excerpta medica is clearly a separate business. On the Elsevier website 41 titles of Excerpta Medica are listed, but none of the Australian Excerpta clones. Here it says that:

Every journal contains bibliographic references and abstracts summarizing original articles from primary research and clinical journals. The records are carefully selected from 4,000 journals from 70 countries around the world, which makes the Excerpta Medica Abstract Journals very comprehensive.

The home page of Excerpta Medica states that it is an “Elsevier Business”, a strategical medical communications agency, partnering with their clients in the pharmaceutical and biotech industries to educate the global health care community to enable them to make well informed decisions (copied from EBM definition of Sackett, hé?)

Under the heading “strategic planning” it is written that “Our relationship with Elsevier allows us access to editors and editorial boards who provide professional advice and deep opinion leader networks” ….(!!)

I’m not the first one noticing this.

In 2007 the same link was given by the PLOS-paper about ghost management[1], discussed above..

Here Excerpta is mentioned as an example of a MECC.

And not only in this paper. Both a Medscape[7] and a Perspectives in Biology and Medicine article[2] mention the role of Excerpta as a MECC. A citation from the latter:

Recovered documents show that the pharmaceutical company Wyeth hired the MECC Excerpta/Medica to produce several scientific papers on the dangers of obesity and on obesity treatment as part of their marketing strategy for Fen-Phen. Mundy documents that Wyeth paid between $15,000 to $20,000 for Excerpta to prepare each article, of which $1,500 would go to the “named author” as an honorarium. Some completed papers, simply listed as “author to be determined,” lacked a “named author,” while others had made their way in to print or were under review. One doctor, Dr. Richard Atkinson, was so pleased with the arrangement for “Therapeutic Effects of Dexfenfluramine: A Review” that he wrote a thank you note to Excerpta/Medica saying,“Let me congratulate you and your writer. . . . Perhaps I can get you to write all of my papers for me” (Mundy 2002, p. 164).

And Medscape:

What made Excerpta Medica such an inspired choice is that it is a branch of the academic publisher, Reed Elsevier Plc., which publishes many of the world’s most prestigious science journals. Excerpta Medica manages two journals itself: Clinical Therapeutics and Current Therapeutic Research. According to court documents, Excerpta Medica planned to submit most of the articles it produced to Elsevier journals. In the actual event, Excerpta managed to publish only two articles before Fen-Phen was withdrawn from the market in 1997. One appeared in Clinical Therapeutics, the other in the American Journal of Medicine (another Elsevier journal). In neither case did the authors of the articles disclose that they were paid by Excerpta Medica. So clean was the laundering operation, in fact, that many of the authors did not even realize that Wyeth was involved.

By the way Fen_Phen was not particularly effective, and was linked to valvular heart disease, leading to the death of hunderds of people. Even after withdrawal Wyeth spent $100 million on public relations to convince the public that the response had been overblown.

Hereby I do not want to suggest that Excerpta has played a similar role in the Vioxx case, but it does illustrate that Excerpta is a MECC with dangerous principles as it organized the ghostwriting for Wyatt elaborately, using its connections with Elsevier in a very nontransparent way.

I also don’t want to suggest that the followed procedure is unique for Excerpta. Several other MECC’s follow the same approach. For many other examples see the references below, especially [1, 2, 7]. It is really tarnishing. And worth a reading.

However, In my opinion we have to fear more from the strategic publication planning of the MECCs in authentic journals then the fake Australian Excerpta series. Firstly, because the known Journals are far more trustworthy and have far more impact than the throwaways. Secondly because the phenomenon of ghostwriting is widespread, also among “first class Journals”. A conservative benchmark for ghostwriting of papers published in biomedical journals is roughly 10%[2], but in particular cases the percentage may be much higher [1]. This has caused Richard Smith, former editor of the BMJ to sigh that “Medical Journals Are an Extension of the Marketing Arm of Pharmaceutical Companies.”

Anyway, I bet that my doctor did not describe Vioxx for my backache 10 years ago because he read “The Australasian Journal of Bone and Joint Medicine”. Rather he must directly or indirectly have learned from the results of the VIGOR trial published in the New England Journal of Medicine.

With respect to the citation I began with, it is not from Merck, but from Pfizer as an answer to the question: “What is the purpose of publications?” on the header on a Pfizer sales document (2000)

References

1. Sismondo, S. (2007). Ghost Management: How Much of the Medical Literature Is Shaped Behind the Scenes by the Pharmaceutical Industry? PLoS Medicine, 4 (9) DOI: 10.1371/journal.pmed.0040286
2. Moffatt, B., & Elliott, C. (2007). Ghost Marketing: Pharmaceutical Companies and Ghostwritten Journal Articles Perspectives in Biology and Medicine, 50 (1), 18-31 DOI: 10.1353/pbm.2007.0009
   The whole issue is dedicated to this topic: Perspectives_in_biology_and_medicine.
3. Rochon PA, Gurwitz JH, Simms RW, Fortin PR, Felson DT, et al. A study of manufacturer-supported trials of nonsteroidal anti-inflammatory drugs in the treatment of arthritis. Arch Intern Med. 1994;154:157–163. [PubMed]
4. Lexchin J, Bero LA, Djulbegovic B, Clark O. Pharmaceutical industry sponsorship and research outcome and quality. BMJ. 2003;326:1167–1170. [PubMed]
5. Smith R. Medical Journals Are an Extension of the Marketing Arm of Pharmaceutical Companies. PLoS Med. 2005 May; 2(5): e138. Published online 2005 May 17. doi: 10.1371/journal.pmed.0020138.
6. Ross JS, Hill KP, Egilman DS, Krumholz HM. Guest Authorship and Ghostwriting in Publications Related to Rofecoxib: A Case Study of Industry Documents From Rofecoxib Litigation JAMA. 2008;299(15):1800-1812.
7. http://www.medscape.com/viewarticle/492877

Photo Credits

Margaret Shear, Public Library of Science, see [6]

*Merck has never admitted that Vioxx could cause a cardiovascular risk, but the general idea is they just covered it up.