Multi-Author Medical Blogs – At the End it is all about Credibility

9 03 2011

Recently, Bertalan Mesko (Berci on Twitter) was asking his twitter followers whether they had a favorite Web 2.0 story.  Berci needed examples for his yearly “Internet in Medicine course” at the university of Debrecen.

Doctor Ves (drVes) and Berci discussed various examples of blogs that had grown in a way: a blog that branched from blog to most popular podcast/physician-radio host (Dr. Anonymous), Kevinmd.com starting from a solo blog with 2-line snippets to a HuffPost-style conglomerate, DiabetesMine becoming a group voice with increasing popularity and industry recognition and Dean Giustini’s start from blog to the openmedicine journal based on WordPress.

And while those are all great examples, I just wondered whether growth from single to multi-authored blogs is per definition “the best” and something one should strive for. Does growth in number of authors automatically mean: “growth” of the blog? And in what respect? Is sheer growth of traffic and a greater audience the most important?

This blog regularly had guest posts in the pasts and they were surely an enrichment. Shamsha Damani was the main contributor. Her welcomed posts were in line with the theme of this blog (evidence based medicine, library-related topics), but had a fresh new look at certain topics (see for instance Grey literature time to make it systematic and  Uptodate versus Dynamed. The post were written by Shamsha, but I reviewed them before publication. Because after all, I’m responsible for the blogs content.

Guest posts/co-authorships can help to post more often. Variety in topics, style and perspectives may  further engage the readership and enhance traffic.

All good things. However, there is a big BUT, the BUT of quality and consistency.

If the blog has a theme or a focus, all authors should more or less adhere to it. Writers can have different opinions and perspectives but these should not be in conflict with the basic principles. And it surely shouldn’t be nonsense!

Good examples of blogs where authors replenish each other while adhering to a basic style are: Life in the Fast Lane (focus: emergency medicine and critical care, education, web.20 & fun) and the Health Informaticists (pretty much the scope of this blog: EBM, health 2.0, knowledge management).

Another good example is Science Based Medicine, a multi-author skeptical blog. Last year however one author (Amy Tuteur) resigned after

….”it had become clear to both the editors of SBM and Dr. Tuteur herself that, although Dr. Tuteur had routinely been able to stimulate an unprecedented level of discussion regarding the issues we at SBM consider important, SBM has not been a good fit for her and she has not been a good fit for SBM“.

Splitting up can be a good decision in case of unresolvable differences in approach. It was remarkable however that part of the  readers (167 comments to the post) were sad about Amy Tuteur’s leave, because they found her posts stimulating and engaging. Some people like (literally) thought provoking posts, while others rather see thoughtful (and sometimes predictable) posts supported by evidence.

Posts that don’t fit in can pose great credibility problems, not only for co-authored blogs, but also for blogs with guest posts. The well known KevinMD blog, cited above because it has grown from a single to a multi-author blog, recently came under fire because of a controversial guest post. Two (almost) equally famous “skeptic” bloggers devoted an entire post to this mishap, Orac of Respectful Insolence:Say it ain’t so, Dr. Pho! Credulity towards alternative medicine on KevinMD” and Steven Novella at Neurologica Blog wrote That treatment is not based on science? Don’t Worry, says KevinMD.

In his guest post “Why alternative care seems to work“, Peter Weiss assumes that people don’t try (or are even unwilling(!) to try CAM, because they don’t know the working mechanism. Weis’s post is a credulous plea for CAM:

Don’t get so hung up on the explanation that you don’t believe in, that you’re unwilling to try a practice that might actually help you.  Just keep an open mind.  You don’t have to know everything about how things work; you just have to know that they work. Just like, do I really understand electricity or do I just know that if I turn the light switch, the light comes on?

Weis tries to prove his point by saying that a highly prescribed drug as Lunesta has no known working mechanism either. Besides that this is ludicrous comparison, it isn’t true either. We do have a clue as to how Lunesta works (albeit falsifiable like everything in Science). Furthermore, Lunesta is effective whereas there is no such evidence for acupuncture or chiropractic. So should we just go and try and see instead of making an informed decision on basis of evidence  and plausibility?

This post is unlike the critical voice we usually hear from Kevin Pho. Regularly he warns against overtreatment and unnecessary screening,  for instance.

Bloggers seldom critic each other, but this quack-like post has led Steven Novella to conclude:

Weiss’s post on KevinMD is very disappointing, and unfortunately indicates that the filter on that blog for guest posts does not appear to be adequate. I hope it does not indicate a shift in philosophy away from science-based medicine, which would be worse.

Orac is much harsher.  He even devotes two posts to the topic. In style with the blog title he rages a respectful insolent rant: he will remove Kevin MD from his blogroll and will cease to recommend Kevin’s blog as a reliable source of medical information.

Orac -and many of his readers are also displeased with Kevin’s response (where he does admit they are kind of right):

Orac,

I appreciate the critique. As readers of this blog know, I often post pieces here I don’t necessarily agree with myself to promote discussion and debate. Your concerns are certainly valid, and will be taken into consideration as I choose future pieces.

Best,
Kevin

Orac even spent a second post to show the ridiculosity of  teaching the controversy in medicine by “posting pieces you don’t necessarily agree with” . What annoyed people the most was the lack of a disclaimer or an informed comment.

Basically I agree that Kevin should select more critically* and if a bad posts slips through, he should retract, openly criticize, or at least (directly) comment to the post. Indirectly saying that you will be more careful next time is not enough, IMHO. Furthermore comments were closed very soon, not giving people ample chance to respond.

On the other hand, Kevin agrees with the critique on multiple occasions. Also, I do not think that he has only traffic in mind when he includes many guest posts. He invites readers to “Submit a guest post to be heard on social media’s leading physician voice”. In line with this, Kevin once rejected a nomination in the Medgadget blog contests, probably so that some lesser known blogger would get more recognition out of the awards (roguemedic.com). Furthermore, many of the guest posts are interesting and of high quality. Thus, hopefully, this is an exception.

Anyway, this incident illustrates a pitfall of multi-author or multi-guest blogs. Posts should not be in conflict with  the basic principles of the blog. This will be directly noticed by experts in the field and certainly by skeptics), who immediately pounce on any contradictory message. But eventually conflicting standpoints may also dismay or -even worse- confuse other readers (patients, lay people).

In the end blogging is not only about the traffic. It is about credibility. It is not even about your own reputation, it is about the credibility of medical blogs in general.

*************************************

*Earlier, in a short discussion on Twitter dr Ves pointed out: “Well, Kevin is the publisher and he decides what deserves to get in, readers decide whether to follow… Similar to newspaper”. He also stresses we can’t tell KevinMD what to publish. Which is true. However, Kevin Pho and other prominent medical bloggers have a great responsibility towards an audience consisting of people  who seek to be well-informed. Medical statements should be accurate and assumptions should be plausible.
By the way, even newspapers make corrections now and then.

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Worrying: WordPress shut down a Blog of a Student Critizing the Naturopath Christopher Maloney

21 02 2010

Last Thursday PZ Myers, author of the very successful science blog Pharyngula tweeted that Christopher Maloney was a quack” (see first tweet below). Prior to that tweet I’d never heard of Christopher Maloney.

I used to be rather indifferent about homeopaths and other people practicing CAM (Complementary and Alternative Medicine), thinking that it might help some people in some cases.

But examples of patients harmed (even to death) by alternative forms of healing are increasing. In the Netherlands we had two examples of well-known people dying of (curable) cancer after seeking help from alternative practitioners: Sylvia Millecam and the ex-wive of the politician Roel van Duijn. In addition, babies have died as a consequence of craniosacral therapy (see one  recent case in the NTVG (the Dutch Medical Journal) and the English translation of this case at the Anaximperator Blog here).

What is particularly dangerous about the alternative medicine movement is the way it is able to influence and/or mobilize people and media. Read for instance through Roel’s own words (and shiver) how his wife came under influence of macrobiotic healers and was convinced she could conquer the cancer by getting her “yin and yang” more in balance.
And what about the anti-vaccination movement? In our country the vaccination campaign against cervical cancer for teenage girls failed, because of negative publicity propagated via the Internet (and this is just one example).

CAM-movements are also very powerful in trying to silence their blogging opponents, mostly very esteemed journalists and scientist. Simon Singh, a British science writer, is currently being sued for libel by the British Chiropractic Association. Why? Because he wrote an article in the The Guardian “Beware the spinal trap” in which he states that The British Chiropractic Association happily promotes bogus treatments (which he substantiates). This resulted in Singh being sued for libel by the British Chiropractic Association.

Suing for libel is one foul approach to try to silence the anti-quack scientific writers. Another is trying to shut down the blog of those critical writers. These two approaches have been used by Christopher Maloney.

Maloney, as I learned from P.Z. Myers at Pharyngula:

“… is a naturopath in the state of Maine, where quacks like him get to call themselves “doctors”. These so-called “doctors” get to make recommendations like this, in which he disparages standard flu vaccines and suggests these useless prescriptions:

Parents waiting for vaccinations can provide their children with black elderberry, which blocks the H1N1 virus. A single garlic capsule daily cuts in half the incidence and the severity of a flu episode for children.”

But Christopher Maloney is also dangerous in another respect. He tried to cut out a student*, Michael Hawkins, who criticized him, pointing out that “Naturopathic medicine is pure bull”, first by demanding the student to alter the blog post, next by asking WordPress to shut down the blog, which they did!!! (see FTSOS Fiasco)

This is the letter WordPress sent to Michael (see Pharyngula again); the picture below is from the Google cache http://tinyurl.com/ylbeshp (thanks Cryptocheilus, see comments)


And this is what you see when you search for: forthesakeofscience.wordpress.com:

That is a real spineless action and extremely unfair. I know so many sites and blogs that are spam or just contain a lot of abusive language. One such (Dutch) blog geenstijl.nl even won several blog wards.  Undeserved I think, but that is another issue.

WordPress shutting down a blog on request of a naturopath, who calls himself Dr. without having a true medical education (which seems allowed in the US State Maine). Without rigorous checking. That is creepy…..

Should I now fear the shut down of my blog criticizing WordPress?

Dear WordPress, the true power of blogging is that we, bloggers, can have a critical function in society, we can have  a voice. Blogging is almost identical to freedom of speech. When you shut down a blog of someone who is (rightly) criticizing something or someone you are endangering this process of debate, that scientists adhere to, but many CAM-proponents do not.

Shame on you WordPress. Shame on you!

———————————

Added: 2010-02-22:

* The blocking procedure was started by another quack:  Andreas Moritz. He admitted to getting WordPress to pull Michael Hawkins’ blog (source again Pharyngula).

If you want to read more on the dangerous nonsense Andreas Moritz is selling (i.e. cancer is a manifestation of “unresolved conflicts”) then you should read this article at Respectful Insolence (of “Orac”).

Below are some tweets about this WordPress/Maloney incidence in chronological order.

  1. PZ Myers
    pzmyers Christopher Maloney is a quack. http://bit.ly/aFJFNZ Spread the word.
  2. Laika (Jacqueline)
    laikas #Wordpress shut down a blog critiquing “Dr” Maloney (Quack) on his request. Shame on U WordPress! http://bit.ly/aFJFNZ (previous tweet also)
  3. Laika (Jacqueline)
  4. gimpy
    gimpyblog This is shocking and worrying for antiquack bloggers pls RT RT @laikas: #Wordpress shut down a blog tackling quack http://bit.ly/c3gsRF
  5. Elmar Breitbach
    ElmarBreitbach RT @gimpyblog: This is shocking and worrying for antiquack bloggers pls RT RT @laikas: #Wordpress shut down a blog tackling quack http:/ …
  6. trancegemini
    trancegemini RT @pzmyers: Christopher Maloney is a quack and WordPress censors Free Speech. #quack
  7. Liz Ditz
    lizditz Repeating @pzmyers http://bit.ly/bZBKLn Naturopath Christopher Maloney is a quack. http://bit.ly/bXsjT9 And WordPress lacks spine.
  8. Laika (Jacqueline)
    laikas RT @wordpressdotcom: WordPress.com is down, we’re working on restoring service now. @pzmyers what did you do? Witchcraft?
  9. Pamela
    timorousme So this infamous quack doctor had WordPress shut down the blog of a kid I know, and is threatening to sue: http://bit.ly/cDMC1E
  10. Chris Patil
    DoNotGoGently WordPress made a student who criticized a naturopath edit his blog – and then shut him down anyway. http://bit.ly/aFJFNZ

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Maloney is a naturopath in the state of Maine, where quacks like him get to call themselves “doctors”. These so-called “doctors” get to make recommendations like this, in which he disparages standard flu vaccines and suggests these useless prescriptions:

Parents waiting for vaccinations can provide their children with black elderberry, which blocks the H1N1 virus. A single garlic capsule daily cuts in half the incidence and the severity of a flu episode for children.





Blog Spam and Spam Blogs (2)

14 09 2008

In a previous post I gave two examples of Health Blogs that are really pills-selling-sites. In this post I will show two examples of real Spam Blogs.

Spam blogs or splogs are usely fake weblogs where content is often either inauthentic text or merely stolen (scraped) from other websites. All spam artificially increases the site’s search engine ranking, increasing the number of potential visitors.

Database-management blog: no longer exists

Original post at this blog above and comment below.

One Spam blog that I wanted to show you, is no longer available. It is called Database Management.

Technorati-profile (authority=51)

This blog had no own content, but scraped it from blogposts having the (WordPress?) tag “database”. Although the post does link to the original site, it doesn’t refer to the author’s proper name, but some automatically generated fake name. For instance Shamisos instead of Laikaspoetnik (see Fig).

When I tried to place a comment on their site I had to login into the WordPress-account (although I was already logged in into mine). That’s when I began to really distrust it.

It’s technorati profile still exists (see Fig.). It is clear that the blog has rapidly increased it’s “authority” in the few months it existed. From zero to 51.
Many blogs linking to this blog are also gone or peculiar. Other blogs might have just linked to the spam blog because they assumed that this was the original post, not the copy. Presumably by having so much content on ‘database management’ the splog gets more traffic (of the preferred kind). This might be an example of a splog that backlinks to a portfolio of affiliate websites, to artificially inflate paid ad impressions from visitors, and/or as a link outlet to get new sites indexed (Wikipedia).

The second example of a spamblog is a very interesting site for Medical Librarians: Generic Pub, with the webadress: http://genericpubmed.com/pub/ with posts about PubMed. Really high quality information. Why? Because the posts derive from elsewhere. All of my posts about PubMed are in there, as are those of my colleagues, and perhaps your posts as well. There is no clue as to where the post really came from. You don’t get any pingbacks, unless the (original) post linked to you. That’s how I found out. As with the other spamblogs you cannot comment. Comments are always closed.

one of my posts on Generic Pub

The blogroll of Generic Pub

Blogroll of Generic Pub

Generic PubMed homepage

Generic PubMed homepage

The site does not hide its real intentions. To the left is a huge pill “cialis” and the blogroll consists of only pills, as well as PubMed tag feeds of Technorati and WordPress.

If you strip of the web adress to: http://genericpubmed.com you arive at the homepage, which is unmistakingly a pharmaceutical e-commerce website. Why is this done? Perhaps the sites looks more reliable whith all those PubMed posts or perhaps the site might be easier to find.

One way or another, these two sites steal posts from other sites. Tags used by Technorati or by WordPress, that can be easily transformed into a feed make it very easy for these spambloggers to automatically import blogposts with a certain tag.
By the way, did you find your post in there?

Previous post, see here.

————————————————————————–

Database-management blog: no longer exists

In een eerder post heb ik 2 voorbeelden gegeven van blogs die eigenlijk tot doel hebben pillen te verkopen.

Nu 2 voorbeelden van echte Spam Blogs.

Volgens Wikipedia: Spam blogs of splogs zijn doorgaans nep-weblogs, waarvan de inhoud vaak min of meer gestolen wordt (“scraped”) van andere websites. Dit verhoogt de ranking door zoekmachines en zorgt ervoor dat het aantal bezoekers toeneemt.

Een Spam blog dat ik jullie wilde laten zien, is niet langer beschikbaar, tw. Database Management.

Dit blog had alle inhoud gepikt van posts met de (WordPress?) tag “database”. Er wordt wel gelinkt naar de originele site, maar de naam van de auteur wordt vervangen door een of andere automatisch gegenereerde naam, bijv. Shamisos in plaats van Laikaspoetnik (see Fig in engelstalig gedeelte).

Toen ik een commentaar wilde plaatsen op deze site, werd ik gedwongen in te loggen in WordPress, terwijl ik nota bene al ingelogd was. Vanaf dat moment vertrouwde ik het echt niet meer.

Het technorati profiel van deze site bestaat nog steeds (zie fig in engelstalig gedeelte). Het blog is in enkele maanden tijd van 0,0 tot 51 gestegen in “authoriteit”.
Veel blogs die naar dit blog linken zijn ook opgeheven of zijn verdacht. Andere blogs hebben misschien slechts per ongeluk naar deze splog gelinked, omdat men dacht met de originele post van doen te hebben, niet de kopie. Waarschijnlijk krijgt de splog zo meer verkeer van mensen die juist in database management geinteresseerd zijn. Mogelijk is dit een splog die teruglinkt naar een aantal klonen en vice versa. (Wikipedia).

Het 2e voorbeeld van een splog is een erg interessante site voor medisch informatiespecialisten, nl Generic Pub met het webadres: genericpubmed.com/pub. Allemaal kwalitatief zeer goede posts over PubMed. Maar ze zijn wel gejat. Al mijn berichten met de tag PubMed zijn er te vinden, evenals die van mijn collega’s en misschien uw berichten ook wel.
Nergens is de ware herkomst van de berichten te herleiden. De echte auteurs krijgen normaal geen pingback, alleen als de oorspronkelijke post een link naar hen bevat. Zo kwam ik er eigenlijk achter. Evenals de andere splogs, kun je geen commentaar plaatsen.

De website verhult zijn werkelijke bedoelingen niet. Links staat een reuzachtige pil “cialis” en de blogroll bevat alleen namen van pillen alsmede de feeds van de PubMed tags van Technorati en WordPress.
Als je het webadres stript tot: genericpubmed.com kom je op de homepage, onmiskenbaar een e-commerce site. Waarom verschuilt men zich achter zo’n blog? Lijkt de site er betrouwbaarder door of vinden potentiele klanten de site makkelijker?

Hoe dan ook deze 2 sites stelen van andere websites. Een feed nemen op Technorati- of WordPress-tags is een eitje, en dit maakt het deze spambloggers erg makkelijk om automatisch blogposts met een bepaalde tag te importeren.
Tussen 2 haakjes, heeft u uw post al getraceerd?

Vorig bericht in deze serie, zie hier.





Blog Spam and Spam Blogs (1)

11 09 2008

Flickr.com cursedthing (CC)

We all get our spam once in a while. Most of the time spamfilters block them. Askismet works well at this blog. Often you recognize spam by the hyperlinks or the words, i.e. “viagra”.

But sometimes spam is not so obvious. In 2 separate post I would like to give some examples of less obvious blog spam, spamblogs and something in between.

Acccording to wikipedia:

Blog spam is done by automatically posting random comments or promoting commercial services to blogs. Any web application that accepts and displays hyperlinks submitted by visitors may be a target.

Conversely, spam blogs are usely fake weblogs where content is often either inauthentic text or merely stolen (scraped) from other websites.

All spam artificially increases the site’s search engine ranking, which often results in the spammer’s commercial site being listed ahead of other sites for certain searches, increasing the number of potential visitors and paying customers.

Blogs & Spam: “Spam” by request?

David Rothman describes at his blog how he is often mailed by people asking him to post about their site, which often is “just a lousy site solely meant for pharma marketing”. He refuses if the site isn’t really useful, but apparently many of his fellow health bloggers aren’t that fussy, since those particular sites often manage to get mentioned on other health blogs anyway. David hopes that the blog-reader will read through this, but is that really the case? The blogger may be considered an expert in the field (that’s why he receives an email) and people may be inclined to take his word for granted. Striktly taken this may not be spam, but it sure works the same way.

Spam Blog (1). “Spam” hidden behind “Breaking Health News”

About a week ago, I had a look at WordPress.com and saw an interesting featured post with the (WordPress) tag “Health”.
At WordPress “Featured Posts” are at the top of a tag list -in this case “Health”-, which increases traffic to such posts). The subject captured my attention, because it was about Addison’s disease (which I have). I read it.

Somebody with primary Addison (Primary Adrenal failure, which leads to inability to make the hormones cortisol, aldosterone and dehydroepiandrosterone (DHEA)) asked whether the menstrual irregularity she developed a year ago could be caused by the replacement therapy with Hydrocortisone and Fludrocortisone and if this could lower her fertility.

The answer (see here) was rather lengthy, it discussed the causes of menstrual irregularity, primary Addison’s disease, replacement therapy, that (the often not replaced) DHEA might improve general well-being, and finally comes to possible explanations:

  • changes in menstrual cycle could be related to too much or too little of the replacement hormones
  • recurrence of menstrual cycles was reported in one patient treated with DHEA (also considered as a supplement, by the way).
  • advice: consultation of an endocrinologist.

Nothing really wrong with this. However a more plausible explanation wasn’t mentioned, i.e. that the reduced cycling might be due to the disease itself. Nowadays the main cause for primary Addison is auto-immunity, and auto-immunity often doesn’t come alone. Gonadal failure can occur in approximately 5% of the woman with auto-immune Addison’s (Williams Textbook of Endocrinology, E-medicine).
For instance in 100 Dutch patients the distibution was as follows

… In 47% of the patients with autoimmune Addison’s disease at least one other autoimmune disorder was present. Primary hypothyroidism had the highest prevalence (20.5%), followed by vitiligo (9.6%), non-toxic goiter (8.4%), premature menopause (7.3% of the women) (….).
From: P.M.J. Zelissen et al, J Autoimmun. 1995 Feb;8(1):121-30.

I tried to place a comment. However, comments were closed (at the date of posting). Odd. I must say that I already found it weird for a patient to start with I actually have an interesting question.” No one says that, but rather:

Help, I’ve Addison and my menses become irregular, I want to have children, so I’m afraid that I’m becoming less fertile. Can this have anything to do with the corticosteroids I take?”

An even closer look points out that:

  • both the Q & the A are written by the same person.
  • The automatically generated “Possibly Related Posts” only link to posts at the same blog
  • as do all “so called comments” (so a kind of self-ping).
  • There is no info whatsoever about who is behind this site.
  • The tab “About” is really the tab Pharmacy Store, where a bunch of “high quality medications” are offered.
  • If I click on fosamax (which a lot of ex-Cushing (panhypopituitary) Addisonpatients need), I ‘m linked to a really (recognizable) commercial site: see here

Is this so bad? Well at least as bad as a lot of commercial-pills-selling-sites that don’t look like commercial-pills-selling-sites. It is quite misleading to use a blog on “breaking Health news” as a cover-up for real intentions: selling. Readers cannot respond, only trackback. Furthermore, in this particular case, the information was not really adequate for patients either (although “partially prepared” by pharmD candidates). One may also wonder why such a post becomes the featured Health blog at WordPress. Well, it will have suited them (and their tag “health” is well-thought-out).

But there are better (or really worse) examples of real spam blogs. Two examples will be given in the next post (see here).

Flickr.com cursedthing

———————-

We hebben allemaal wel eens last van spam. Meestal wordt spam wel door spamfilters geblokkeerd. Askismet houdt in ieder geval het nodige tegen op dit blog (700 spam). Vaak herken je spam wel aan de (vele) hyperlinks of termen als “Viagra”.

Soms is echter niet zo duidelijk dat het om spam gaat. In tenminste 2 berichten wil ik voorbeelden geven van minder evidente blogspam, spamblogs en wat daar tussenin zit. Het zijn dingen waar ik toevallig tegenaan gelopen ben.

Eerst wat definities. Volgens Wikipedia :

Blog spam is done by automatically posting random comments or promoting commercial services to blogs. Any web application that accepts and displays hyperlinks submitted by visitors may be a target.

Conversely, spam blogs are usely fake weblogs where content is often either inauthentic text or merely stolen (scraped) from other websites.

All spam artificially increases the site’s search engine ranking, which often results in the spammer’s commercial site being listed ahead of other sites for certain searches, increasing the number of potential visitors and paying customers.

Blogs & Spam: “Spam” op verzoek?

David Rothman vertelt op zijn blog dat hij vaak een verzoek per mail krijgt om een post te plaatsen over een bepaalde site, terwijl het gewoon om een belabberde farmaceutisch e-commerce site gaat. David weigert dit als de site slecht is/zijn lezers niets biedt, maar kennelijk zijn z’n collega bloggers niet zo kieskeurig: vaak worden dergelijke sites binnen no time wel op andere gezondheidsblogs besproken. David hoopt dat de lezers van dergelijke blogs hier doorheen kijken, maar ik vraag me af of dat werkelijk zo is. Degene die erover schrijft op zijn blog wordt al gauw als expert gezien (daarom kreeg hij ook dat verzoek) en lezers zullen al gauw geneigd zijn wat hij bespreekt voor waar aan te nemen. Strikt genomen is dit wellicht geen spam, maar het resultaat is hetzelfde.

Spam Blog (1). “Spam” verborgen achter “Breaking Health News”

Ruim een week geleden zag ik een interessante post bij de “featured posts on Health” bij WordPress.com.
Bij WordPress komen “Featured Posts” bovenaan de posts met een bepaalde tag, in dit geval “Health” te staan. Ze worden daarmee extra in het zonnetje gezet en krijgen extra veel bezoek. Maar in dit geval trok ook het onderwerp mijn aandacht, omdat ik het zelf heb: de ziekte van Addison.

Iemand met primaire Addison (uitval van de bijnieren waarbij de oorzaak in de bijnieren zelf ligt, niet in de aansturing. Hierdoor worden de hormonen cortisol, aldosteron en dehydroepiandrosterone (DHEA) niet meer gemaakt) stelde een vraag over haar sinds een jaar vaak uitblijvende menstruatie. Ze wilde weten of dit iets te maken kon hebben met de substitutietherapie met Hydrocortison and Fludrocortison.

Het antwoord (zie hier) was nogal weinig to the point. Het volgende werd breeduit besproken: de oorzaken van onregelmatige menstruatie i.h.a., primaire Addison, substitutietherapie, dat het vaak niet gesubstitueerde DHEA (eigenlijk ook vaak gebruikt als voedingssupplement) de kwaliteit van leven kan verbeteren, om tot slot met enkele mogelijke verklaringen te komen:

  • veranderingen in de menstruatiecyclus kunnen samenhangen met te weinig of te veel vervangende hormonen (maar niet door fysiologische doses, hetgeen het streven is bij vervanging).
  • één patient kreeg weer een normale cyclus na gebruik van DHEA (overigens werden ook de andere hormonen beter ingesteld)
  • tot slot een algemeen advies; ga naar je endocrinoloog.

Hier is niet echt wat mis mee (vooral met het laatste advies). Zij het dat een voor de hand liggende verklaring niet genoemd wordt, namelijk dat een onregelmatige cyclus en verlaagde vruchtbaarheid ook kunnen samenhangen met de ziekte zelf. Tegenwoordig is de belangrijkste oorzaak voor primaire Addison autoimmuniteit (afweerreactie tegen eigen weefsels/organen) en autoimmuniteit komt vaak niet alleen. Uitval van de geslachtsorganen kan in zo’n 5% van de patienten met primaire Addison voorkomen (Williams Textbook of Endocrinology, E-medicine).
Bij 100 Nederlandse patienten was de verdeling bijvoorbeeld als volgt:

… In 47% of the patients with autoimmune Addison’s disease at least one other autoimmune disorder was present. Primary hypothyroidism had the highest prevalence (20.5%), followed by vitiligo (9.6%), non-toxic goiter (8.4%), premature menopause (7.3% of the women) (….).
From: P.M.J. Zelissen et al, J Autoimmun. 1995 Feb;8(1):121-30.

Ik probeerde een reactie te plaatsen op de blogpost, maar dat was niet meer mogelijk. Nou ja niet meer: het was de dag dat het bericht geplaatst was. Raar. Ik moet zeggen dat ik al mijn wenkbrauwen fronsde bij het zien van de aanhef I actually have an interesting question.” geen patient begint zo, maar zegt eerder:

Help, Ik heb Addison. Mijn cycli worden onregelmatig en ik wil nog graag kinderen hebben, dus ik ben bang dat ik minder vruchtbaar wordt. Kan dit komen door de corticosteroiden die ik ter vervanging inneem?”

Geintrigeerd ging ik verder op zoek.

  • De Q & de A bleken door dezelfde persoon geschreven.
  • De automatisch gegenereerde “Possibly Related Posts” linken alleen naar berichten op het blog zelf.
  • Dat geldt ook voor alle commentaren (een soort zelf-ping).
  • Er is nergens info over wie er achter de site zit.
  • De tab “About”/”Over” is eigenlijk de link naar de “Pharmacy Store“, waar een reeks “high quality medications” wordt aangeboden.
  • Als je bijvoorbeeld op fosamax (vaak gebruikt door ex-Cushing Addisonpatienten) klikt kom je op een duidelijk herkenbare commerciele site terecht: zie hier

Is dit zo erg? Nou dit blog is net zo erg als die pillen-verkopende websites die er niet uitzien als pillenverkopende websites. Het is nogal misleidend om je blog te presenteren als een blog over “breaking Health news” om je werkelijke bedoelingen te verbloemen: pillenverkoop. Lezers kunnen niet reageren, alleen trackbacken. Verder was de informatie ook voor patienten niet helemaal volledig. Je kunt je ook afvragen hoe zo’n blog nou een featured Health blog bij WordPress wordt. Nou, het was wel lekker meegenomen (en ze kennen niet voor niets de tag “Health” toe).

Maar er zijn betere (or eigenlijk slechtere) voorbeelden van echte spam blogs. In de volgende post (zie hier) zal ik er twee bespreken.





Farmaceutische industrie & wetenschap: je zou er depressief van worden.

8 06 2008

Ook in de Psychiatrie een nauwe verstrengeling tussen farmaceutische industrie en wetenschap.

Beluister hier het interview met Trudy Dehue in het radioprogramma Argos (de Ochtenden) van de VPRO/VARA (vrijdag 6 juni 2008), over haar boek De Depressie Epidemie
[ISBN: 9789045700953] .

In dit interview komt vooral de invloed van de industrie op het (te vaak) voorschrijven van depressiva (prozac e.d.) en het verdoezelen van bijwerkingen aan de orde.

In deze audio-opname wordt er ook op gewezen dat editors van vooraanstaande engelstalige tijdschriften (Lancet, BMJ) regelmatig de verstrengeling van geneesmiddelenindustie en wetenschappelijk onderzoek stevig aan de kaak stellen.

Klik hier voor zo’n editorial van Fiona Godlee BMJ 2008;336: “Editor’s Choice – Doctors and the drug industry” en hier voor een editorial van RE Ferner – BMJ 2005; 330: 855-856: “The influence of big pharma”.

Toevallig speelt nu ook de kwestie van het ADHD-medicijn Strattera, dat volgens het Nederlands Comité voor de Rechten van de Mens (NCRM) het risico op suïcidaal gedrag, hartaandoeningen en leverbeschadigingen zou verhogen. De NCRM beschikt over een gedeelte van het evaluatierapport over dit medicijn ‘Strattera Risk Benefit Assessment’ (2006). In de 67 beschikbare pagina’s zijn o.a. de volgende gegevens te vinden:

  • 130 meldingen van suicidaal gedrag in één maand
  • 766 spontane meldingen van hartaandoeningen
  • 172 meldingen van leverbeschadigingen
  • 20 geslaagde zelfmoorden

Morgen [9 juni 2008] is er een zitting van de Bestuursrechtbank in Amsterdam aangaande de openbaarmaking van het hele rapport in het kader van de Wet Openbaarheid Bestuur. Het Nederlands College ter Beoordeling van Geneesmiddelen (CBG) wilde het rapport namelijk niet vrijgeven.

Bronnen: