Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Empower yourself with Amazon reviews!

Discussion in 'Action Alerts and Advocacy' started by cigana, Jan 7, 2011.

  1. cigana

    cigana Senior Member

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    Dear all,

    The user justinreilly came up with a great idea. Part of the problem behind doctors not understanding our illness is that they are given no training in CFS/ME. Many (most?) medical textbooks push the Wessely view. If we are going to change these beliefs we really have to get it through to the new generation of medical students that this is a real disease.

    Enter Amazon reviews...

    All we have to do is give poor (1star) reviews to medical textbooks that push the Wessely view. All of the hard work has even been done for us by the industrious justinreilly - from his Amazon web page it is easy to see which books he gives 1star reviews to:

    http://www.amazon.com/gp/cdp/member..._pdp_rev_all?ie=UTF8&sort_by=MostRecentReview

    Imagine: if we could all do our part we could easily bring down the average score to 1star. This would force textbook editors to take notice and make a change for the better. If we don't do things like this nothing's ever going to change - so get in there and have fun! Let's aim to bring down this part of the establishment - this is a real achievable task.

    Cig

    p.s. Don't forget to give other pro-CFS reviewers a vote by clicking on "Yes" to the question "Was this review helpful to you?"
     
  2. SpecialK82

    SpecialK82 Ohio, USA

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    Love this idea!! I just added my 2 cents :D
     
  3. justinreilly

    justinreilly Senior Member

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    Stephen Straus still persecuting us from the grave

    Thanks Cigana for highlighting my little 'project amazon'. I've taken a look at about two hundred medical texts on amazon and only two had substantially accurate info on ME. So this is a big problem.

    I really would appreciate anyone who wants to to throw some one star reviews at some of the worst offenders. At some point I'll make a list of who they are.

    To start with, it would be great if anyone who can spare a few minutes can post a low-star review on "Harrison's Principles of Internal Medicine" which is the #1 best selling medical textbook. NIH's Anthony Fauci is an editor and he still includes NIH's own version of Wessely, Stephen Straus, as the author of the "CFS" entry. There is a new edition of the book coming out in august, so if enough people write bad reviews, hopefully fauci will temper this article for the new edition.

    Here's the link. If you want to read what Straus wrote, click on "Look inside" (located on top of the picture of the book) and type in "CFS" into the search field. Below is my review. Note that you aren't supposed to post derogatory remarks about an author on amazon, so you're supposed to keep to criticizing the book. I've had at least one post removed (i'm assuming for this reason) and amazon doesn't alert you that your review has been removed.

    Thanks everyone!

    http://www.amazon.com/Harrisons-Pri...dp_top_cm_cr_acr_txt?ie=UTF8&showViewpoints=1

     
  4. cigana

    cigana Senior Member

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    Thanks for the link Justin, I just gave it a 1-star.
     
  5. SpecialK82

    SpecialK82 Ohio, USA

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    your comments are great - i'm wondering if tracking down the author and truly educating him on this illness might prove useful. We could send him links and articles - and God willing, if he is an open minded professional, he might change this whole section.

    Since it seems to be a common reference book in hospitals, it would seem that we have a wonderful opportuntiy to write a respectful and thought-out email, engage his intelectual curiousity, and make him want to do better - maybe there would be changes in the next edition if this was handled tactfully?? i don't know but it's worth a shot - can you imagine if he corrects it - can you imagine the impact when physicians would read this!
     
  6. justinreilly

    justinreilly Senior Member

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    Thanks cigna! Just by putting up 3 one-star reviews, we've lowered the books star rating from 4.5 to 4! I think this alone is enough to impact sales slightly. Let's get some more reviews on there and really get Fauci's and his co-authors' attention! This has a real world impact far greater than just posting a comment in response to a news article or blog post, imo.

    @Specialk82- unfortunately the author of the article, Stephen Straus was on the level of Wessely and Reeves in terms of knowingly persecuting us. So I don't think writing him would do any good. Plus he's been dead for about three years.

    The Editor Antony Fauci who includes his article is the head of NIAID at NIH who has been our long time enemy. He's not going to respond to anything except public embarrasment- this is why he changed his stance on AIDS- and perhaps a hit to the pocket book. so lets hit him with more negative reviews.

    The vast majority of other books i reviewed have authors who i think just read the summary journal articles on ME written by the Wessely school and just copied all their lies, so educating the authors in general is a very good idea. i think our effort would best be used in writing the one star reviews first to get their attention then corresponding with them. Unfortunately, i've noticed that just corresponding with doctors, when they don't have any other outside pressure to change, doesn't help us that much.
     
  7. justinreilly

    justinreilly Senior Member

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    Here's what Hillary Johnson had to say about Straus on a recent blog post comment:

    Unfortunately, with Fauci's help, death hasn't fully stopped Straus from spreading his lies.
     
  8. Sasha

    Sasha Fine, thank you

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    What a superb idea, Justin (and thanks for starting the thread, cigana). I've added a one-star review.

    People reading this thread may not realise how doable it is to drop the ratings of the offending textbooks like a stone! You need only put a couple of sentences on if you want - something along the lines of "Like other reviewers I'm disappointed to see such outdated and misleading coverage of myalgic encephalomyelitis" is all you need. And there are now twenty-five 5* reviews of the Harrison textbook, and already four 1* reviews in relation to the ME/CFS coverage (plus two more by people annoyed not to have received their order!).

    Just twenty more 1*s and we'll have pulled its rating down to 2.5. Would you buy a medical textbook with a 2.5 rating? I wouldn't even click on the link to look at it...
     
  9. Esther12

    Esther12 Senior Member

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    To me, it seems a bit unfair to be giving out one star reviews to books that just don't mention CFS.

    For a text book on critical care, I wouldn't expect them to cover a condition like CFS which is difficult to cover briefly, and rarely the point of care for CFS.

    I like the idea of rating textbooks in this way, but just think we should try to be a bit more forgiving to those books which may not be great, but aren't really bad either.
     
  10. justinreilly

    justinreilly Senior Member

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    You have a good point, Esther and I plan to go back to some of the books that don't mention ME and raise their stars in my review to two or three. There are some texts such as some of the 2,000 page internal med textbooks where their failure to mention a common disease like ME is worthy of a low star rating, imo.
     
  11. justinreilly

    justinreilly Senior Member

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    Sasha: excellent point. and thank you for writing a review!!
     
  12. Nielk

    Nielk

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    I would like to actually "read" a book before giving it a rating.
    I have no problem giving a bad rating to a book who spreads unfair or false information about CFS.
    I just feel that it's unethical to give a review to a book you never read.
     
  13. Sasha

    Sasha Fine, thank you

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    Hi Niel - I agree that it's important to check stuff for yourself, even if it's to read excerpted stuff. I followed Justin's suggestion to "look inside" the Harrison textbook and to search on "CFS" inside it to find the CFS material. The section on CFS pathogenesis includes: "it is commonly accompanied by... somatic preoccupation" (i.e. being preoccupied by your body) and later, "Ultimately... pathetic resignation can mark the protracted course of illness". That was plenty enough for me to be unhappy with the CFS coverage even without the scientific shortcomings.
     
  14. Nielk

    Nielk

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    Hi Sasha,

    Now I understand. If you are able to read these excerpts, I have no problem downgrading it.
    Thanks for the clarification.

    Nielk
     
  15. cigana

    cigana Senior Member

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    I feel it's unethical to classify CFS as a mental disorder based on 1000's of biomedical papers you've never read, and then to falsely educate a generation of doctors.
     
  16. TheMoonIsBlue

    TheMoonIsBlue Senior Member

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    Hi, Just thought I'd add that it would have a strong impact to rate the ME/CFS books which are really, really good (are there any LOL?) I've been hoping to get a hold of a copy of "Reviving the Broken Marionette: Treatments for CFS/ME and Fibromyalgia" by Maija Haavisto which is supposed to be really good but only has 2 reviews on Amazon. If there are more positive reviews for books like this, they will maybe move up in the ranking of books that are displayed when one searches for "Chronic Fatigue Syndrome". People tend to buy books with a lot reviews.

    P.S. Many libraries allow people to request books, so if there are books on ME/CFS you'd like your library to carry, make a request! I think "Osler's Web" should be in every major library! Keep in mind that students use the library (I think they still use libraries.....unless they do everything on the computer now!) to gather information to write papers, and if there are just a lot of out of date books with misinformation, well, a person can only learn what information is available to them!
     
  17. urbantravels

    urbantravels disjecta membra

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    Amazon reviews are subject to being gamed: Amazon knows this, and eventually will act to correct for coordinated attacks against a book.

    I used to work in textbook publishing. I don't think there is much of an argument for textbook sales or, indeed, their reputation being harmed by negative reviews on a consumer booksellers' site. Textbooks are not sold to individuals, except in rare, one-off cases; they are bought by students but "adopted" by professors, who choose which books are the official course materials that students will be required to buy. Therefore sales efforts are made by publishers to professors into what is called the "adoption market." Negative reviews of a textbook on Amazon will not affect whether a student buys that textbook: they must buy it if it is the required course text. (And I've been out of the business a while so I don't know how many students buy their textbooks off Amazon rather than from campus bookstores or other websites: I do know there are sites more specifically aimed at textbook sales and I suspect those probably account for a fair percentage of online textbook sales.)

    I would suggest as a more effective course of action identifying the publishers of the books that you feel are giving outdated coverage to ME/CFS, contacting those publishers directly, and asking that they be sure update the information in the next edition; giving as many references as you feel are sufficient to show that the information is outdated. You might also develop a list of potential reviewers or even authors for new sections on ME/CFS in future editions. (During the publishing process, textbooks are sent around to "peer reviewers" in a manner that's a little bit like peer review for a scientific paper, and the reviewers may raise questions or suggests changes. So the author's opinion alone is not the only one that goes into the final text.)
     
  18. Sasha

    Sasha Fine, thank you

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    Thanks, urban - hadn't thought of all that! :headache:

    Still, knowledge is power! Those are good suggestions about what to do.
     
  19. justinreilly

    justinreilly Senior Member

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    good points urban. thanks for the reality check. I wonder if any doctors buy these texts as references when their own copies go out of date. The medical texts i perused including Harrison's generally seem to be very good general reference books. That's one area we might have a little effect (though if they already have allegiance to one text then maybe not so much of an effect).
     
  20. justinreilly

    justinreilly Senior Member

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    I agree that we should support the books we do like- especially as they are not medical texts and a good review would actually have an effect (Of the 200 or so med texts I looked at only 2 were substantially accurate on ME ) I'd love it if everybody would give Osler's Web a five star review; it certainly deserves it!

    http://www.amazon.com/Oslers-Web-La...dp_top_cm_cr_acr_txt?ie=UTF8&showViewpoints=1
     

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