The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

Humanizing Madness

Discussion in 'Action Alerts and Advocacy' started by justinreilly, Dec 1, 2011.

  1. justinreilly

    justinreilly Senior Member

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    Here is a book that is pretty offensive about ME, saying we are hypochondriacs with "no evidence at all of physical illness" and even comparing us to "pathetic" drug addicts (see my review below).

    Pls leave a short review with one star (you can be very brief and just say it is inaccurate on ME) so this guy gets the message. Giving one star reviews does lower sales which hits these garbage authors in the wallet and also limits the spread of this misinformation. You can also click "Yes" at the bottom of reviews you like (such as mine : ) ). Thanks!

    http://www.amazon.com/Humanizing-Ma...eurosciences/dp/1932690395/ref=cm_rdp_product

    While you're at it, pls copy and paste your review to Amazon UK and Canada (you don't need to sign in again, you will automatically be signed in from your Amazon.com account):
    http://www.amazon.co.uk/gp/product/1932690395/ref=cm_cr_thx_view
    http://www.amazon.ca/gp/product/1932690395/ref=cm_cr_thx_view

     
  2. justinreilly

    justinreilly Senior Member

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    "Project Amazon"

    As above, almost every medical text which has info on ME, exclusively presents the Wessely school lies as fact. These books are essentially doctors talking to each other where they can say the 'truth' that we are somatisizing and don't have an organic illness without patients hearing them and bothering them. I think it's very important to call them on this misbehavior.

    These texts (and also journal review articles) are where the rubber meets the road; this is what med students and doctors read to inform them about us. And this leads directly to our abuse by doctors. We have a powerful tool to counteract these lies; it's called the Amazon one-star review! These have a real impact.

    Please join me in writing reviews on books that misrepresent our disease. If you already respond to inaccurate media stories with comments, why not write Amazon reviews too? I guarantee you they have much more bang for the buck than writing website article comments which the authors can, and usually do, just ignore! With our limited resources we need to maximize impact of our efforts and I believe this is the best way.

    It's fun to actually be able to talk back to the lies in a way the liers can't ignore!

    Pls see my Amazon review page for offenders in need of correction. Check out the one-star reviews I have given and please write your own (don't knock yourself out, they can be short and sweet and still have a powerful impact).

    I am going to start writing to publishers and authors asking that they correct the errors. It would be nice to show them that it is more than just me who objects to the misinformation.

    Thanks for your help!!

    http://www.amazon.com/gp/cdp/member..._dp_auth_rev?ie=UTF8&sort_by=MostRecentReview
     
  3. taniaaust1

    taniaaust1

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    Pity as a group we dont create some kind of fund to take those who do this kind of thing to court. Surely what they do must be illegal in some way? I cant imagine in any other serious illness someone writing things like that in a book and getting away with it.
     
  4. Tristen

    Tristen Senior Member

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    Great idea Justin, Thanks for the links. Some excellent commentaries you've written.

    I think reference to the thousands of Pubmed articles on the pathology of CFS could be included in commentary as well.
     
  5. Snow Leopard

    Snow Leopard Hibernating

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    It is also important not to overdo it. A few well written (negative) reviews is all that is needed.
     
  6. Esther12

    Esther12

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    I thought that the 4 star review was probably the most helpful for us.
     
  7. eric_s

    eric_s Senior Member

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    Unfortunately, when it's a book there might be not much one can do about it, as long as no individuals that can be identified are talked about. But i might be wrong and also the situation is a bit different in every country.
     
  8. Yungas

    Yungas

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    I dont see a reason to take someone to court for writing a book - people can write what they want,
    just like we can write what we want on the reviews :D
     
  9. justinreilly

    justinreilly Senior Member

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    Don't really agree.

    In any event, I have given one star reviews to well over a hundred books on Amazon. I only give them a one-star if they have harmful anti-science Wessely stuff stated as fact. Even if twenty more people wrote reviews on ten of these books, there'd still only be three negative comments re ME on each of these really harmful books, and we are a LONG way from that, so I don't think you should discourage people from doing this. Many of these are chapters written by Wessely, White, Sharpe and the other criminals and you know they won't be discouraged from abusing us unless we unleash everything we have on them.

    We patients have complained for decades about the fake science and not much has changed. They will not change unless we *force* them to. These book reviews are important because they have force- they reduce book sales. Once they see their ratings go down and they are selling even a small amount fewer of their $150 books, some of them will feel compelled to look into it an some of those will discover that it's all bullshit. They will hire someone other than Wessely to write the chapter next time. Once a few medical texts do this, it will create a domino effect that we can push along. We have to use the power we do have or nothing will ever change and we will die sick in a corner.

    I would appreciate your help in writing reviews for as many as you can. "In war, one must act."

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

    biophile Places I'd rather be.

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    I wondered if it was fair to give a book 1 star based on a few dubious paragraphs, but then I realized that such paragraphs were more unfair. 1 star reviewing isn't really my style, but I certainly won't be complaining about it and I think it can have its place in advocacy amongst other reviews. According to Justin Reilly, their first negative review was removed at request of the author. I think court (taniaaust1) would be going too far, but "diddums" to authors who mouth off inaccurate garbage about certain people and then attract the reasonable scorn of such people on an internet review website.

    I guess some outsiders are going to interpret these negative reviews as just the angry irrational rants of patients in denial about their psychosomatic illness, but whoever arrives at such a conclusion was probably ignorant about the situation in the first place before seeing the negative reviews and believed that anyway. McLaren however presents his work as a dominant candidate for the future of psychiatry, and in his imagined future exists some of the worst psychobabble I have ever read about ME and CFS, it makes the "Wessely School" psychobabble an attractive alternative by comparison.

    What seems to have happened is that he wrote a section on hypochondriasis and decided to mention ME and CFS as classic examples, but he provides no evidence whatever for these views. In fact, earlier in the book he states that Part III is "simply to sketch an outline of how a rational theory of psychiatry should be derived from a definitive model of mind" and that he "will not be giving many references in Part III as the argument should be self-evident. If it isn't, then all the references in the world won't save it." Well all the references in the world isn't going to save the primary hypochondriasis psychobabble about ME and CFS.

    Of course, it is possible that McLaren is simply ignorant about the subject and could easily change his mind when presented with the facts, but my previous experience with other psychobabblers makes me doubtful because psychobabbling is often based in ideology more than evidence. I have not read his following two books but I could not find the word "fatigue" when doing a search in these books on Google Books. It is possible that after the negative reviews he decided not to mention it?
     
    Snow Leopard likes this.

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