That's a great letter Justy. Let's hope she reads it and takes on board the genuine points that have been raised in this thread. As also said previously I think she has been very naive in her approach to marketing this and most of the problems have arisen from that.
Zoe Norris Book - "Chronic Fatigue - A Mystery No More"
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That's a great letter Justy. Let's hope she reads it and takes on board the genuine points that have been raised in this thread. As also said previously I think she has been very naive in her approach to marketing this and most of the problems have arisen from that.
@Gingergrrl i didn't mean 'a' book - just this book. The reason I asked is because she seems to be going to such lengths to restrict the book - no library, no eBook, no lending, not being willing to tell us anything in depth about it to let us know that we would be good candidates to explore her findings or whether her findings would be unsuitable for our M.E. type etc.. I just wondered if, bearing in mind how odd all that is, she would expect purchasers to not reveal what was the big secret (with some threat of legal action). Of course if that were the case then it'd be ridiculous and pretty unworkable.
She can "expect" anything she wants to. But she cannot legally do much of what she "expects" the rest of us to just swallow, hook, line and sinker.
Snowdrop
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If it walks like a duck and quacks like a duck it really is likely to just be a duck.
I don't expect anything of value from the book. there are too many red flags that suggest it's about the money.
I know with our being ill and ignored that we develop a 'no stone left unturned' mentality but in reality developing skill at sussing out who might simply be preying on the vulnerable is important. You don't want to encourage them. Chances are if the book is bought there will be an effort to try and be fair and find something redeeming about the information.
I don't feel the need to bend over backwards to try and find something useful out of fairness. I don't feel she's playing fair with us as very sick people. I bet any information that might be worth considering as a treatment will already have been discussed here on some thread.
At the end of the day I guess I don't believe a cure will come from some obscure publication but from dedicated Dr's and researchers using advances in biological science to untangle this complex multi-system illness.
I don't suppose this book could have been acquired through a lending library?
Also, just a note: I'm not trying to be contrary here or inflammatory it's just what I think on the subject. For myself, I know how many times I have fallen prey to hope and still do. Even when I have experience that suggests it's misplaced.
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CantThink
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I really agree with this. These days I am very wary. There are so many people offering all these supposedly amazing cures. It can be a bit like a carrot dangling on a stick... I try not to be desperate as I think desperation would make me vulnerable.
Sushi
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Yes, if Zoe posted her thoughts here, that would be very helpful.
Or, Zoe could demonstrate her good will and counter some of the impressions expressed on this thread (hopefully wrong impressions) by donating a copy of the book to Phoenix Rising for review.
Sushi
Kati
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Zoe probably didn't come here because one of the forum rules is that you can't sell magic cures (or books on snake oil) and it should remain this way.
60$ is a lot of money, so if everyone committed to giving 60$ to our major charities (OMI, Simmaron, Invest in ME, MEAdvocacy) we as a community would all be better off already
60$ is a lot of money, so if everyone committed to giving 60$ to our major charities (OMI, Simmaron, Invest in ME, MEAdvocacy) we as a community would all be better off already
Snow Leopard
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All the personal attacks and speculation about her intentions is 'wrong', calling her a 'snake oil saleswoman' who practises 'slimy tricks' for example, hardly helps.
The whole thing reflects a break down in communication (vagueness on one side, overreaction on the other etc), leading to members of the forum becoming frustrated, angry, upset etc. and this shows in the posts we see. Most people tend to react first, rather than state how they are feeling in response to such.
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SOC
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It looks like a duck, walks like a duck, swims like a duck, and quacks like a duck, but you want me to call it a kitten because you think it's 'wrong' to call a duck a duck?
Or perhaps you prefer that we do a DNA test on a duck before we are willing to acknowledge that, yes, it is a duck? Maybe it gives every appearance of being a duck on multiple levels, but is actually a kitten in disguise?
How do people protect themselves (and others) from dishonesty and fraud if they are not willing to acknowledge it when they see it? Let's face it, not everyone is as honest and upright as we wish they were. We can't live in a happy little cloud pretending everyone has everyone else's best interest at heart. It's simply not true. A complete lack of transparency and documentable lies are pretty clear signs that someone is not being aboveboard about their dealings with the rest of the world. Denial doesn't change reality.
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jeff_w
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On her Twitter page she writes,
"7 pages of personal attacks because I put everything I had into getting better, and wrote a book about it."
If she were really interested in us, she would address our concerns. As someone else on here previously mentioned, she could offer to donate her book to the board. Instead, she's playing the victim.
"7 pages of personal attacks because I put everything I had into getting better, and wrote a book about it."
If she were really interested in us, she would address our concerns. As someone else on here previously mentioned, she could offer to donate her book to the board. Instead, she's playing the victim.
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A.B.
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The author behaves in a manner that is indistinguishable from a charlatan. She should not be surprised to see patients reacting accordingly.
Undisclosed
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There can't be a break down in communication if there has been no actual conversation. I think there is a lot of vagueness on her part -- is it intentional? -- only she knows. As far as overreaction here?? Hmmm. I think most of us are already frustrated, angry, upset etc especially after the ridiculous ME patients fear exercise debacle. It's frustrating to have individuals like Zoe Norris make generalizations about patients, say no further research is necessary, say she has the cure AND then force us to buy her book to get answers. This is not a great tactic. Why she is doing it this way -- we can only guess.
If I were Zoe Norris, I would actually pay attention to the criticisms received. You can start out with the best of intentions, thinking your plan is the best way to do things and then become shocked when people start criticizing you. I think there have been many legitimate criticisms regarding her comments about patients, lack of transparency, no need for future research, cost of the book, secrecy etc. These are some of the things she might want to address. As far as the comments as to why she is selling the book, wanting to profit from patients etc, that is all speculation and I won't forget there is a real person on the receiving end of these comments.
So Zoe, there has been constructive criticism and harsh criticism. Perhaps, you can post here to answer some questions. If you do, after you post the forum rules would apply to you and personal attacks would not be allowed. It's better to correct misinformation or erroneous opinions. If you don't wish to, could you at least tell us what the abnormal lab test was so we can at least have a hint and discuss that.
The reactions here have been to her website, blog, and Twitter posts. All are confusing, and she comes off vague, exclusive, and arrogant about her conclusions, which she then does not share. We have all seen this before. Every time someone new comes on, I make a point of looking at their material for myself. A first-hand conversation with the writer is then possible, as well as with others.
I am just floored by her expectation to run the other way, as fast as possible, now her task of getting her book launched is complete. You wrote a book, Zoe, one you claim is of great import. Running the other way is not possible. Pandora's box has been opened. I would think with your renewed health, you would want to interact and listen to others' feedback. If you are erring on the side of caution to protect your newfound health, that is understandable. It would be nice to know, though. Please do not run from the crowd you spent four years trying to help.
Early on, reading through our posts and reactions here, my reaction was "Well, let's read the rest, then." As I regularly try to read and overview a broad array of material on health issues and make regular purchases, alloting that money to her book for our community was no big deal, even at her outrageous rates. Just my personal thing. I receive a great deal of material free, so it all evens out. It was just going to take a while. However, there is something about striking while the iron is hot, so I did a budget overview, found I could do it, and ordered the book. I know most here could not do that. It is a stretch for me but a high priority.
Miss Zoe, if you are reading this, please understand my intent. If your book is as good as you say, it will hold up to the criticism. I would think writers would welcome the free publicity. Also, may I point out that professional book reviewers are often sent a complimentary copy of a new book. I am not a professional reviewer, so I do not expect a freebie. This forum site, though, represents hundreds of people with this disorder. I second the question, Is it possible to donate a book for community review here? It is not an unreasonable request.
Awaiting your reply, and would welcome your e-mail reply, as you have my e-mail address. I also second the encouragement to come here and post on this thread. It would be great to hear from you, knowing you are aware of this.
I am just floored by her expectation to run the other way, as fast as possible, now her task of getting her book launched is complete. You wrote a book, Zoe, one you claim is of great import. Running the other way is not possible. Pandora's box has been opened. I would think with your renewed health, you would want to interact and listen to others' feedback. If you are erring on the side of caution to protect your newfound health, that is understandable. It would be nice to know, though. Please do not run from the crowd you spent four years trying to help.
Early on, reading through our posts and reactions here, my reaction was "Well, let's read the rest, then." As I regularly try to read and overview a broad array of material on health issues and make regular purchases, alloting that money to her book for our community was no big deal, even at her outrageous rates. Just my personal thing. I receive a great deal of material free, so it all evens out. It was just going to take a while. However, there is something about striking while the iron is hot, so I did a budget overview, found I could do it, and ordered the book. I know most here could not do that. It is a stretch for me but a high priority.
Miss Zoe, if you are reading this, please understand my intent. If your book is as good as you say, it will hold up to the criticism. I would think writers would welcome the free publicity. Also, may I point out that professional book reviewers are often sent a complimentary copy of a new book. I am not a professional reviewer, so I do not expect a freebie. This forum site, though, represents hundreds of people with this disorder. I second the question, Is it possible to donate a book for community review here? It is not an unreasonable request.
Awaiting your reply, and would welcome your e-mail reply, as you have my e-mail address. I also second the encouragement to come here and post on this thread. It would be great to hear from you, knowing you are aware of this.
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CantThink
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I'm incredulous!!!!!
Stating that people on here are attacking her because she put everything she had into getting better is so incredibly insulting to the members of this forum. It presumes and implies that we have not also done our all.
How condescending, rude and presumptuous. It's strange PR - insult your potential customer base while telling them you are basically superior to them because you tried (apparently) harder than they did and were cured. This is a type of shaming and I've seen it before on fat loss programmes, and in psychologically based CFS cures that put the onus wholly on the patient to cure themselves. If they do not recover, it's their fault.
Ms Norris appears to have completely missed the point - it's nothing to do with whether she's chosen to write a book... It's about the marketing, price and questionable facts used in the marketing. Plus the secrecy means none of us have a clue if the solution would be applicable to our subtype of M.E. or is even something we've already tried. In essence, if those of us offering constructive criticism had been engaged with, we might have bought the book or recommended her work to someone else.
So it is not 7 pages of personal attacks - many of us, including myself, stated in blanced terms why we are hesitant to consider purchasing her book or have chosen not to purchase. It's not our fault if she decided to 'put herself out there' in the public arena by writing a book aimed at a specific patient community. I do not see why she is then surprised when said patient community responds to her twitter/website/book sales pitch...
Journalists, academics and writers have to defend their work all the time, but maybe that's the point: they love their work and actively engage with their audience. They believe what they are doing or saying is correct and have no problem defending it.
This latest development with this writer and book had completely put me off the book. I was on the fence, giving the benefit of the doubt and seeing how this played out. Since that Twitter comment, I see it as nothing more than a partially concealed money making exercise. The concealment being that it has been written in patients' best interests over her own (this impression being given with the whole: denied myself the chance to go out for the evening to stay in and work on the book and other such comments). No one that has patients' best interests at heart would imply we aren't doing out best to also recover.
N.B. I won't post any more to this thread now I've made up my mind about whether I want to buy it or not.
JPV
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Personally I think this is a recipe for disaster. From what I've read of her posts on Twitter, I don't think she has the temperament to handle even the slightest bit of criticism.
nandixon
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Maybe someone already noted this, but in an Aug 21, 2014 post on Twitter she shows her book open and several references (I think) highlighted. It's too blurry to read for me:
https://twitter.com/MECFSRecovered/status/502526708202106880/photo/1
Sushi
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Come on you techies!
SOC
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Ridiculous! More dishonesty and manipulation. She claims she is getting criticism because she got better and wrote a book. Flat out not true. Not one person here criticized her for either working hard to get better or writing a book. She is being criticized for her attitude toward patients, her marketing strategies, her desire to make money off the poor and desperate, and her lies. Her Twitter claim is just another lie to try to garner support where she has earned none.
The PR membership has demonstrated extensively, over many years, a great deal of support for people putting everything into getting better. Her poor, poor pitiful me story is not only untruthful, it is insulting.
The membership, as individuals, has purchased thousands of books over the years by people with theories about the cause and treatment of ME/CFS. We are not opposed to people writing books. We support people writing books -- when those people are honest and transparent about what they are selling.
Someone needs to explain to Zoe that putting your life story and claims to magical cures up for public sale automatically leaves you open for public discussion of your life, experience, motivation, and so on. It's part of going public. Ask any author or researcher. They are always open to questions and criticism as well as kudos and compliments.
While it would be wrong to tell deliberate lies about her (eg Zoe eats dogs to maintain her health), it is not wrong to discuss her marketing strategy, attitude, public persona, or motivation. That's part of the game she chose to play when she put her book up for public sale.
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halcyon
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The majority of the references on those pages appear to be about mercury and thimerosal.