Zoe Norris Book - "Chronic Fatigue - A Mystery No More"

[Iquitos]

Wait... she dedicated her book to people who died from a disease that she says cannot kill?

Oh, yeah, I see... her startling discovery prevents the deaths?? Only we will have to wait a lifetime to hear of it and will be gone anyway.

All her research and she is missing how copyright works.

Edit. If I were totally cured of 24 years of misery and back to normal, as happy and overjoyed as that would make me, the last thing I would do is write a book and "move on." Many do move on and stop talking about their illnesses once recovered, but not with a book written.

She wants us to accept her book as truth with a gag order, no discussion, but will not initiate discussion herself.

With renewed energy, I would be like "Bring on the debate! Throw it at me! Let's hammer it out!" and would expect and invite to be crazy busy gladly answering e-mails and posting everything I could. It would become my life. Nice dream bubble, isn't it?

But... I am going to be the crazy person who scrapes up the money and orders this. I wanna know.

PM me with your PayPal information and I will send you $10 toward that purchase. I hope others will also contribute. Maybe after you've read, you could send it to the next person on the list of those who have contributed and we could eventually send it back to you as the original purchaser.

 

[GracieJ]

@Iquitos You're on. I think it is valuable to know what is being said and written.

 

[ukxmrv]

Only buy it if you can survive without getting your money back. A "guarantee" means little because if she decides that she doesn't want to give you the money back for any reason then you have to decide what action to take. Either walk away and or take her to the small claims court and hope she coughs up then.

We have had a couple of snake oil sellers approach out local ME group over the years who say that they will refund money but it rarely happens in practice.

 

[Gingergrrl]

But... I am going to be the crazy person who scrapes up the money and orders this. I wanna know.

@GracieJ As @Kati said earlier in this thread, I think it would be much better to donate the $60 to OMF's research than for this book (if you were really going to and I know you might have been joking!?).

ETA For some reason the quote feature not working right on my phone.

 

[justy]

I think it would be great if PR funded the buying of this book - then have someone who deals in science to read it and write a review - then we could all discuss it here and let everyone know what the big secret is.

Its cheaper to buy the book in the uk - costs about 30 dollars.

 

[Gingergrrl]

@justy that is a great idea and I've always thought we should have some kind of book review section (for me/CFS related books) on PR that gives a synopsis so people can discuss and decide if the book is with the money.

The two books I strongly recommend are Toni Bernhard's and Elizabeth Tova Bailey's (although these are more coping type books and not science based.). I am also reading Dr. Jay Goldstein's books which are very complex but worth reading IMO.

We could maybe even have people who have read each book rate it as far as how helpful it is in different categories like treatment ideas, coping tools, etc. and we have many science geniuses here on PR for the scientific books ( not me of course.). Not sure this will ever happen but I love your idea!

 

[GracieJ]

@Gingergrrl No, I am serious. I do try to get copies of books for reference, and curiosity has me. I actually have a small amount built into my budget to obtain media, and do not expect to return this. I will order soon while our attention is on it. It is not a waste to see what it is and discuss it, good or bad. We would collectively then know, good or bad. It might turn out to be interesting reference material on some aspects.

After all, this thread is now on page seven, mostly speculation plus a snapshot of a couple of pages. Let's find out.

I like the book review idea.

 

[Mij]

@Gingergrrl No, I am serious. I do try to get copies of books for reference, and curiosity has me. I actually have a small amount built into my budget to obtain media, and do not expect to return this. I will order soon while our attention is on it, and would happily donate it for further review. It is not a waste to see what it is and discuss it, good or bad. We would collectively then know, good or bad. It might turn out to be interesting reference material on some aspects.

After all, this thread is now on page seven, mostly speculation plus a snapshot of a couple of pages. Let's find out.

I like the book review idea.

Can we start a "conversation" on how we can contribute? I like this idea too.

 

[CantThink]

What I would like to know - and maybe one of you knows - is, if a person buys the book are they allowed to discuss it or does the purchaser have to enter into an agreement upon purchasing that basically gags them from discussing it?

 

[GracieJ]

@Mij We are now getting into an area needing a volunteer. My time and energy are limited as I am working five days a week, but as I spoke up about obtaining a copy I will step forward. Mij - sending you an IM.

@Kina and staff - what is needed to start a category for book reviews? Or does this fall under the rules not allowing promotions, and not doable?

I will follow through on the current book being discussed.

@CantThink I think that would be illegal just about anywhere, but of course she could try.

 

[Gingergrrl]

Why would discussing a book be illegal? How could there be book
clubs, etc?

 

[GracieJ]

Why would discussing a book be illegal? How could there be book
clubs, etc?

Exactly.

Her Terms and Conditions prohibit the book's loan, which she probably cannot legally do. If I own a copy, it is my copy. This is a mistake that happens all the time with needlework patterns. Publishers/designers think they can dictate the final disposition of the pattern and anything stitched up off it when it reality, in the states at least, they cannot. The actual printed pattern cannot be copied (except for one photocopy for personal use) and redistributed, but the print copy can be loaned or sold. Anybody familiar with the fine print for UK?

Ordered. We will see what happens.

My thinking on this is not as crazy as some of you think. It looks like it might be a re-run of material already out there; my purpose in ordering it and confirming its content is to help as many as possible know if it is worth buying and using or not. Information to pass on to others. Consider it my donation to our collective gee-whiz file.

 

[CantThink]

@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.

 

[CantThink]

My thinking on this is not as crazy as some of you think. It looks like it might be a re-run of material already out there ...

I agree.

I look forward to hearing your opinion once you have read it.

 

[eafw]

I've always thought we should have some kind of book review section (for me/CFS related books) on PR that gives a synopsis so people can discuss and decide if the book is with the money.

Yes, good idea, another vote for this.

After all, this thread is now on page seven, mostly speculation plus a snapshot of a couple of pages. Let's find out.

She talks about mitochondrial disease on her website, I guess there won't be much more of a revelation than that ?

"Now though with the development of a new test for ME/CFS – the Mitochondrial Function Profile (which includes ATP profiles testing) - it is possible to see the failure of particular physical processes in the body which leads to symptoms in ME/CFS and indicate treatments most likely to help."

if a person buys the book are they allowed to discuss it

Also on her website is a very long-winded set of terms and conditions, in which she says that people can't display any of the content in any way. This is contrary to UK fair dealing provision (you are allowed to quote and critique a copyright work), and I don't see her having much of a case overseas for blocking discussion either

 

[CantThink]

Also on her website is a very long-winded set of terms and conditions, in which she says that people can't display any of the content in any way. This is contrary to UK fair dealing provision (you are allowed to quote and critique a copyright work), and I don't see her having much of a case overseas for blocking discussion either

@eafw

Thank you. That answers my question.

 

[Gingergrrl]

@CantThink thanks for explaining you meant this particular book (not any book!) and that makes sense. I guess she could try to sue someone for discussing her book but I don't see how she would possibly succeed!

 

[Undisclosed]

@Mij We are now getting into an area needing a volunteer. My time and energy are limited as I am working five days a week, but as I spoke up about obtaining a copy I will step forward. Mij - sending you an IM.

@Kina and staff - what is needed to start a category for book reviews? Or does this fall under the rules not allowing promotions, and not doable?

I will follow through on the current book being discussed.

@CantThink I think that would be illegal just about anywhere, but of course she could try.

The authors of a book wouldn't be able to promote their book but any other member who is interested in doing a book review could say what they wanted to about any author. I suppose if we could get enough book reviewers, we could have a dedicated forum/subforum.

I would find this helpful. I have limited funds and would love to hear if a book is worth reading before I purchase it.

 

[eafw]

I suppose if we could get enough book reviewers, we could have a dedicated forum/subforum.

For now would it fit in the community lounge ?

 

[Tammy]

Maybe you are projecting a bit? This is not about whether people believe you have ME. It's about someone claiming The One True Cure without any evidence beyond their say-so and trying to take advantage of sick people. Very different issues.
.

You stated that this is not about whether people believe you have ME. Please clarify your response in message # 54 in response to SNOW LEOPARD so I don't assume that this is in part what you are questioning'........because if it is........then what's the point in even discussing her story.