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

[Tammy]

Call me a wolf if you want to. I'm going to stand up for the sick, desperate, and poor against someone trying to use the desperation of the unfortunate to get money and fame. Yes, I'm the mama bear type, so maybe you should call me a bear instead of a wolf. Either way, I will defend the weak and I don't care what you call me in an effort to get me to stop. It isn't going to work. I'm not that easily intimidated.

Ditto................I can be the mama bear type too. I will defend also in the areas I see fit for a young woman who suffered for 15 years. And you are not going to get me to stop either. I'm not that easily intimidated............in this case anyway. In case you havn't noticed...........I've defended Zoe by using her own words............ only from generalized claims that I thought were unfair and unfounded. Having said that...............I may not agree with everything she has said but I will NOT be a part of your jury.

 

[Tammy]

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@Tammy

"Negative ... "Angry"... .. Attacking".... "A pack of wolves unleashed".

Its sick people you are talking about in that denigratory and inflammatory way. Bed bound or sofa bound many of them, and as equally abandoned by friends and relations, and by society in general, as you.
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You say you are not closing down discussion - whilst characterising people with whom you disagree in wholly disparaging and invalidating terms.
.

In part I feel like this is calling the kettle black because I've seen many inflammatory remarks used against Zoe...........who was at one time bed bound and sofa bound. When I used those remarks..................that's because that is how I saw it..........I can't sugarcoat something that is obvious to me. We all see things differently here...........and that is how it felt to me.

 

[JPV]

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.

Thanks for taking the plunge and doing this on behalf of all of us.

You never know. As much disdain as there is for her and as likely that it's just a rehash of what's already contained in the collective knowledge, there may be a few new tidbits that are worthwhile.

 

[Esther12]

there may be a few new tidbits that are worthwhile.

I'd be amazed if there were I'm afraid.

 

[IreneF]

I don't agree with everybody's statements, but considering the amount of spleen unleashed on characters such as Wessely, it's been pretty tame. Norris isn't here to defend herself, but she's also not going to get offended unless she joins us. I think she is naive more than anything.

 

[Wildcat]

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@Tammy wrote: "In part I feel like this is calling the kettle black because I've seen many inflammatory remarks used against Zoe"

Be specific - which remarks are inflammatory?

You will have to be more specific to show that posts on this thread actually are "Negative ... "Angry"... .. Attacking".... "A pack of wolves unleashed".


Zoe has made grandiose sweeping claims about a supposed ME cure, and she has made contradictory statements about deaths from ME. People with ME have every right to question such claims and statements and the motivations of the person making them.

How do you explain the contradiction in Zoe's statement “Oh, and it is most definitely not a terminal disease, let’s put that myth straight too. I was appalled to see this being falsely spread around.” with her dedicating her book to specific people who have died from ME, or from damaging mistreatment.


Zoe Norris: “Of course there may be some who don’t wish those around them to be well.”

What an unpleasant and offensive statement. Unfortunately that is very typical of the insulting and unpleasant rhetoric of those who flog unsubstantiated commercial ‘ME cures’ and “How to cure your ME” books, when their grandiose claims are challenged . There are a lot of those in Britain, its an entire industry, and those who question the validity of the cures and books are called "Negative ... "Angry"... .. Attacking".... for merely making reasonable critique and asking necessary questions.



@Tammy - You say that you don’t want to shut down the discussion on this thread.

Well, I for one have had enough of sweeping and offensive accusations of the kind you have made about people posting on this thread.

I won’t be posting on this thread again.
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[Woolie]

@Tammy, I for one am sorry you felt attacked. I also respected your courage for expressing your view, and should have said so. Sometimes its easy for all us to get engrossed in the argument - especially one as inflaming as the present one - and forget the feelings of the real people behind them.

 

[JPV]

How do you explain the contradiction in Zoe's statement “Oh, and it is most definitely not a terminal disease, let’s put that myth straight too. I was appalled to see this being falsely spread around.” with her dedicating her book to specific people who have died from ME, or from damaging mistreatment.

I think her sentence may just have been poorly worded. Playing Devil's Advocate, perhaps what she intended to say was that since she's of the opinion that there is potential cure for it, then it doesn't HAVE to be a terminal disease.

 

[JPV]

I'd be amazed if there were I'm afraid.

I understand that everyone has been disappointed over the years by snake oil salesmen claiming to have a magic cure. I've spent tens of thousands myself on treatments that provided little or no relief.

I don't condone her business strategy, but If just one nugget of information helps increase the quality of someone's life, even in a minor way, it could be worth the asking price. You never know, but I still try to remain cautiously optimistic.

 

[Wildcat]

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@JPV Zoe wrote the book and the blog. One presumes she did edit it. Why should readers do the editing for her in a bid to make her statement sound more reasonable than it in fact is?
If what she wrote is not what she meant she has had ample opportunity to edit her statement, but has not.

 

[JPV]

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@JPV Zoe wrote the book and the blog. One presumes she did edit it. Why should readers do the editing for her in a bid to make her statement sound more reasonable than it in fact is?
If what she wrote is not what she meant she has had ample opportunity to edit her statement, but has not.

I'm not editing her post. I'm just offering a possible explanation... which you asked for BTW.

 

[Gingergrrl]

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.

@Kina I think it could be a sub forum in the community section or an ongoing thread in the community lounge? Instead of dedicated or assigned readers, maybe anyone who had read a particular book could give their critique? I can think of several books on ME/CFS to start off the list (some of which I have read and others that I am curious about but have not read.) I think it would not only help each other from a financial perspective but also for people who have difficulty reading an entire book but could easily read a quick summary or review?

 

[SOC]

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.

Frankly, I don't want this snake oil saleswoman to gain monetarily from her slimy tricks. Yes, we could refute her nonsense if we had the book, but she still wins because she got us to support her. No, thank you. I'm not encouraging or supporting her. My curiosity isn't that difficult to manage. Let's face it, she doesn't have a miracle cure and we all know it. All she has is a get rich quick scheme.

 

[Snow Leopard]

How do you explain the contradiction in Zoe's statement “Oh, and it is most definitely not a terminal disease, let’s put that myth straight too. I was appalled to see this being falsely spread around.” with her dedicating her book to specific people who have died from ME, or from damaging mistreatment.

She is simply confusing is vs ought. It ought not to be a terminal disease (because there is or should be a cure).

 

[Undisclosed]

Zoe Norris is aware of this thread

Saddened and shocked at what has been written about me on an ME forum, literally shaking right now.

Zoe could post why what has been said is wrong, give us clarification, and provide some information about the cure. How are we to know anything really. We speculate based on past experiences.

 

[Valentijn]

Zoe Norris is aware of this thread

I think "saddened and shocked" is a good description of our reactions to some of her statements about ME/CFS and her sales tactics

 

[justy]

Dear Zoe,
I am so happy to see that you have recovered after 15 years of suffering with this awful disease. Being bedbound and in pain for years on end is an awful way to live and the suffering of many of us with M.E is very great indeed. I have a friend with M.E who is totally bedridden, who can no longer speak or type and lives totally alone. This person suffers in ways that I, a merely moderate to severe sufferer cannot even imagine.

Seeing the photographs of you out running and looking so well and happy makes me happy, because I dont' want anyone to suffer what I and my family are going through for one minute longer (my daughter is also sick and I had to care for her when she was almost entirely bedbound).

I spend a lot of my time thinking about and researching things that might help me, my daughter, my friend with very severe M.E, the community of good friends I have here at Phoenix Rising and the wider community of patients I have never and will never meet. I have spent a lot of money on tests and treatments - some have made me worse and caused new problems. I have been a patient of Dr Myhill for some years and also now am a patient of Dr De Meirleir in Belgium.

I am an intelligent woman - currently studying for a degree in Literature, but I do not have a scientific brain - I have worked very hard over the years to understand the science behind tests that I have had done - in fact it took me over two years to understand the ones I had done by Dr Myhill which showed many abnormalities.

I can understand that after 15 years of being ill you may not have had much of a career and little money - we are all in the situation and many of us are living on benefits or our parents etc. Many people have lost jobs, homes, relationships, their children, because of this illness. So any opportunity to make a new life after M.E and speak out about the experience for the benefit of others, whilst at the same time earning some money, and hopefully kick starting a career sounds like a great idea. It IS a great idea. But I have one small problem that stops me from buying the book - I get the impression from your website that there may be something in the book that could help me, my daughter, my friend with very severe M.E, my friends in the Phoenix Rising community, and the wider patient population to get better. IMAGINE THAT! all the people that could benefit so greatly and have their lives of non stop suffering and torment ended if only they knew what it was they could do to get better. But you appear reluctant to share this information with me and i'm not sure why.

I bought a book by Toni Bernhard about living with M.E AFTER I knew what it was about - because once I knew what was in it I had no doubt it would be of value to me. I bought another couple of books on overcoming M.E some years ago, one was about a woman's protocol, which she discussed on the cover, and then I wanted to find out even more and see exactly what she had done. If you were prepared to tell me what it was - the one simple thing - that got you better I would most likely buy your book to find out all the details and see how you got on as I am so happy that you have recovered and I would like me and my daughter and my friend and all my friends here at PR to get better as well.

Perhaps I am missing something here, and you could explain it to me so that I can understand WHY you cant share the information with me before I buy the book. This is a genuine question. I know you have worked so hard for the past four years writing it, but I would still happily, or perhaps more happily buy your book if I knew what it contained.

Kind Regards,

Justine.

P.S - The book is a bit expensive - I understand you need to cover costs, but what a shame there isn't a cheaper Kindle version that I can quickly download and read.

 

[CantThink]

She is simply confusing is vs ought. It ought not to be a terminal disease (because there is or should be a cure).

I also think the most definitely doesn't help. I think something like: In my opinion it ought not be a potentially terminal disease... (as there is or should be a cure), sounds better and is harder to argue against... As opposed to banket, sweeping statements with presumably no publicly available citation as to why they are correct.

I agree with the other posters in this thread who find the tone/style of what is being written by Ms Norris, in order to market her book, to be somewhat inflammatory and (in my opinion) condescending. For me it is not so much just what she's writing - okay she made a discovery that worked for her, that's great - it's how it is being presented. Specifically, I find the marketing and sale of the book amidst such secrecy with strange terms and conditions, off putting.

When buying a book by an unknown person, those are the only things the purchaser has to go on, which is why I believe they are so important - how does the writer treat their audience? Is what they are saying potentially relevant to me? What are their credentials etc. The cost is also important - is it justified, and therefore a price I'm willing to pay.

As an example of other instances where I have had to weigh up what's being publicly presented as a sales pitch versus what I might actually get once I've paid out money - I remember when the lightning process and other therapies like that came out, I had the same decision to make... I'm fairly open minded so I'll at least consider the evidence before accepting or dismissing whatever is being put forward. At the same time, the tone and style of how a book or treatment are promoted/advertised are the primary elements as to whether or not I'm likely to pursue what's being offered.

I didn't go down the road of trying any of them because of how they were branded. My friend separately bought one of the LP books and read it. She leant it to me to flick through and we then discussed whether it was something she should pursue. I couldn't have discussed it, at that point it was so new, with her without her lending it to me. Despite the fact I didn't even want to try it myself... I was just helping her reach her own conclusion.

 

[Mij]

Frankly, I don't want this snake oil saleswoman to gain monetarily from her slimy tricks. Yes, we could refute her nonsense if we had the book, but she still wins because she got us to support her. No, thank you. I'm not encouraging or supporting her. My curiosity isn't that difficult to manage. Let's face it, she doesn't have a miracle cure and we all know it. All she has is a get rich quick scheme.

There is another way of looking at this too. We buy one book between a few of us which I don't mind contributing to, review it and reveal the big so called "secret". I like the idea that no one else will be tempted to buy it thereafter if there proves to be nothing "WHO worthy"

As someone else mentioned, there might be something in the book that might be helpful to someone here and they can save their money.

 

[CantThink]

There is another way of looking at this too. We buy one book between a few of us which I don't mind contributing to, review it and reveal the big so called "secret". I like the idea that no one else will be tempted to buy it thereafter if there proves to be nothing "WHO worthy"

As someone else mentioned, there might be something in the book that might be helpful to someone here and they can save their money.

I think this was discussed earlier, and then (I think) GracieJ decided to buy it. Some members have offered to donate towards her buying it. Thinking about it, if we all do that then we all own it and can pass it between us, or discuss it freely, without compromising the terms and conditions.