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

[Snow Leopard]

You think you did. I'm not so sure.

Edit - This marks my last post in this thread.

 

[SOC]

So now you're telling people what they can and cannot feel?

Regardless of my personal feelings, this thread is rather ugly. I think the best thing we can do right now is take a step back from this...

@jeff_w didn't say she couldn't feel entitled. He said her feelings of entitlement are not legitimate. I can feel that the world owes me a living, that doesn't mean that feeling is legitimate. The world doesn't owe me a living. I can feel that everyone on PR is being mean to me all the time. That doesn't make it true. Yes, I can feel whatever I want and no one can tell what to feel or not feel, but just because I feel it doesn't make it true. And other people are entitled to tell me it's not true. We are not obliged to lie about reality just because someone else feels something that is untrue.

Sometimes the truth is ugly. We can't, and shouldn't, avoid talking about things just because they are unpleasant to hear or think about.. This is not Pretty Pink Unicorn Pony Land where everything is happy and nice and everyone is kind and generous. Sometimes we have to talk about bad things that are happening and we have to say negative things about them. Not everything can be discussed only in positive terms. Some conversations are hard. That doesn't mean we shouldn't have those discussions.

If you think this thread is ugly, what do you think about what Zoe is doing? I find that FAR more ugly than the discussion about what she is doing.

 

[SOC]

You said 'legitimate'.

One of the few things I have learned in my life is that telling people that their feelings are illegitimate is the #1 way to piss them off.

Sometimes people need to be pissed off. It is not the obligation of other people to refrain from telling the truth because it's going to piss someone off. That way tyranny lies.

 

[adreno]

I dislike the "I worked so hard to get well, and now I'm entitled to get paid for it" ideology. Who here hasn't worked hard to get well? And isn't getting cured reward enough in itself? How about all the sick patients who can't work for a living? Or support their families? Is Zoe's hard work really enough to entitle her to $60 from every one of us (since we are not allowed to share the information)? Somehow I think there are people out there more worthy of support, especially people who dedicate their time and energy to help those who have little to give.

 

[eafw]

To an extent I do feel a bit sorry for her. She has found herself in the wrong place at the wrong time - a fairly easy target - all of a sudden with a whole group of people pointing fingers at the problems with her marketing techniques and claims. It is a bit of a sting to the ego to be on the recieving end of that, it doesn't have to be "personal attacks" to hurt (and I don't think there are "pages of personal attacks" here).

Sadly I don't think she is going to step up and acknowledge that she could have approached things in a better way.

 

[eafw]

It would be very worthwhile to investigate whether or not she has done anything legally questionable in her book. If she has, a lawsuit is surely in order.

If it was something where another author had had their copyright breached, but not just for the tackiness of who she chooses to dedicate it to.

re there legal consequences for falsely mentioning the WHO's interest to promote her book?

I can actually imagine a scenario where this is spin rather than flat out fabrication. WHO are contactable, though will rarely reply, so she might have some correspondence from them saying that she is free to send extracts from her book but they can't guarantee a response.

I dislike the "I worked so hard to get well, and now I'm entitled to get paid for it" ideology.

It's perfectly OK for people to ask for payment for their time and labour, including creative works. Can't expect other people to cough up though if they don't want to buy, or are not been given an honest picture of what it is that's being sold.

 

[SOC]

So now you're telling people what they can and cannot feel?

I've given this more thought over the past few hours and I realized that there is a significant communication breakdown here. We are losing the distinction between a feeling -- fear, love, dismay, happiness -- and a belief.

People feel what they feel. If watching geese makes me happy, it's ridiculous to tell me I can't feel happy. If Zoe feels offended that we don't like her marketing strategy, it's ridiculous to tell her she can't feel offended. We feel what we feel.

When we are talking about Zoe's "feeling" that she is entitled to compensation, we are not actually talking about a feeling, we're talking about a belief. She believes she's entitled. It's a thought process, not a feeling. It is perfectly legitimate to question someone's poorly constructed belief. That's what debate is all about.

So no one was telling Zoe what she can and can't feel. @Jeff was pointing out that Zoe's thinking that she is entitled is not based on sound logic.

 

[Tired of being sick]

Why is everyone always sooo defensive?

Trust me,being defensive is never good for you or the party
you are trying to convince..........

And you all know it!

Just look at the list of Doctors/specialists you have exhausted through the years..

 

[Aurator]

Why is everyone always sooo defensive?
.

Maybe you speak in jest, but based on the responses, I don't think defensive is quite the right analysis of most people's reaction. A proactive voicing of well-founded scepticism towards a mishmash of implausible claims about ME's curability seems like a fairer analysis. If anyone was being defensive it was the author of the book, who has been conspicuously guarded about the book's contents.

Trust me,being defensive is never good for you or the party
you are trying to convince..........

And you all know it!

Just look at the list of Doctors/specialists you have exhausted through the years..

You're right; defensiveness doesn't work too well; you just get trampled on all the more. Upping the anti is what's required.

 

[Zoe.]

Hello to everyone.

I feel I have to respond here as I do feel hugely attacked by some on this forum thread for publishing my book. I put a huge amount of hard work into it as I felt it positive and important. I made the information I found available for those who do wish to purchase it. (The book title is written incorrectly here on this thread, it’s called – ME /CFS – a mystery no more. How I was cured. The Science behind my recovery)

People who have M.E. themselves will likely be aware of how badly the disease and sufferers have been portrayed in the past and so it is for this reason I am taking great care over the release of my personal medical results and the information I found. I absolutely do not want my personal medical results or any of the personal details to be published, misconstrued or shared about out of context which could alter their true meaning or full understanding.
My medical history is very personal to me yet I have decided to release it – in the way that I wish to. This is very important to me, anyone who has personally had a serious physical illness for many years and as a result lost control over their lives might understand this.

As I mentioned on my blog I had come across the details leading to my recovery many times over the years and progression of my illness and simply dismissed it. It was serious, physical and I thought surely it can’t be that serious… in the end the test results indicated it was unfortunately. If I simply said it to others in a post online, you may well dismiss it too. It is the detailed background, reasoning, and science that is important to get across. I took a great deal of care over this. It don’t feel it can be summarised and it’s true overall meaning maintained also, so it became a book of approx. 60,000 words. It wasn’t possible to put the detail for understanding in a blog or forum post.

I believe I would have got treatment and recovered much sooner had the full details been put together and explanation made available, this is what I did in my book. I didn’t use M.E. or CFS or forum sites very much, I went to science journal articles and sites mostly, I don’t mean this in a patronising way it’s just I have a science background so went there direct.

After having little control over my own life for so long, it is important to me I have control over my own medical results and how they are released, everyone has this right. Since recovering and getting my abilities back I am extremely independent and believe in doing things that affect me my own way. Of course everyone should.
Initially the book was just to be available to the UK with possibly further progression from there to other countries down the line if anyone was interested. I didn’t expect it but I got interest from people abroad very quickly so I did my best to make it available to them. The postage is what has made it highly expensive outside of the UK. I have no control over postage costs. I have done my best to make it available to absolutely anyone who wants to purchase it. I could never afford a kindle or similar device and thought a book would be better received, especially in the UK as originally intended. I always found books easier to read.
A terminal disease is one that a sufferer will soon die of and not recover from regardless of treatment; this is not true of M.E. I was diagnosed with it by a consultant neurologist and I am now fine. I should add he never said M.E. was a terminal illness. Again I know others who’ve recovered.

Very sadly yes some have died while suffering with ME/CFS.

I do have full copyright ownership of the book and the content of my blog. (An ISBN is simply a number/bar code for bookshops/online sellers to identify a book when ordering it in and track it’s whereabouts.) The book terms and conditions stand and are required for a sale to take place.

Please remember that slander is not acceptable whoever it is directed at, disabled or well. I am not lying. Slander/libel affects reputation. As someone who had a diagnosis of M.E. for so many years I am very sensitive to being called a liar or that what I do is unworthy. No one should have to endure this.

I’m not going to be bullied or controlled into not having a book for sale because I was previously disabled. I’m not going to be silenced; many may wish me to be. I’m absolutely not making or asking anyone buy it either, I don’t feel entitled, it is very importantly every person’s choice if they wish to purchase my personal story or not. I fully understand others may not feel it is for them.

Maybe my happiness and exuberance at recovering and pride at achieving completing my book after such hard work had come across as arrogant. I hope not but I cannot apologise for feeling overjoyed at recovering and my body properly working again, when before it would fail me. No-one should have to.
I know others who have made full recoveries from M.E. and have happily moved on with their lives, never to think of M.E or contact others with it. It seems most who recover from M.E. just get on with their lives. I was fortunate I knew these people and their full recoveries was a great source of hope to me and so I wanted to write and publish my book.

I have had so much support, encouragement and congratulations on both recovering and completing the book from wonderful and kind people - along with lovely and moving comments from people who have read the book so far. So reading through the comments here has been truly awful in comparison. I did expect there to be a certain amount of opposition to the book due to the nature of my results and I’m truly finding it difficult to believe that people with M.E. would post such comments. I would never have written all of this about someone who recovered and wrote a book for sale, I have been always been really happy for others who recovered and published their story, I either purchased their book or thought it wasn’t for me.

I am aware that those with a negative agenda may resort to bullying, perhaps slander, dismiss or generally shout down those who wish to get a message across in a positive way.

Thank you so much to everyone who has written, or contacted me with, messages of support and encouragement.
I do absolutely wish you all the very best.

 

[halcyon]

@Zoe. I'm sorry that you feel personally attacked. I disagree that this thread is full of attacks. Criticism, yes, but not personal attacks. I fear you missed the point; your approach in marketing your book, and the intentional withholding of any and all details, has led to a great deal of frustration amongst the patients that would buy your book. Nobody wants to watch a movie without seeing a trailer first, nobody wants to buy a car without a test drive. Likewise, nobody wants to buy a book if they have absolutely no idea what it's about or if it's relevant to them at all.

You claim to have the secret to curing ME, and you state that researchers are all barking up the wrong tree, and that you will hand over the secret to anybody else if they pay you money. You really don't understand how this could piss people off? I'm not saying that you're obligated to give away your hard work for free, but let's be honest here. You're not writing a book about the secret to a happy life, or the secret to making a really awesome cake. You're writing a book about having cured yourself of a disease that has thus far been uncurable by modern medicine and that ruins the lives of millions of people across the world.

People who have M.E. themselves will likely be aware of how badly the disease and sufferers have been portrayed in the past and so it is for this reason I am taking great care over the release of my personal medical results and the information I found. I absolutely do not want my personal medical results or any of the personal details to be published, misconstrued or shared about out of context which could alter their true meaning or full understanding.
My medical history is very personal to me yet I have decided to release it – in the way that I wish to. This is very important to me, anyone who has personally had a serious physical illness for many years and as a result lost control over their lives might understand this.

I cannot understand this approach at all. Either you want to publish the details of your story, or you don't. You can't have it both ways. Yes, you have a copyright on your work, but fair use doctrine would allow people to summarize or even publish excerpts of your book for all to see.

Again I cannot personally understand your approach. I tell anybody that will listen about what I believe is causing my ME (an enterovirus). I would scream it from the mountaintops if I could. I don't want it to be a secret, I want everyone to know so that they can have the same tests I had and can access the same treatments and hopefully get better.

I can't understand why you feel the need to be so secretive about this pivotal test result that you had that apparently was the key to unlock everything. You have to understand that it comes across as being a tactic to sell your book and nothing more.

So reading through the comments here has been truly awful in comparison. I did expect there to be a certain amount of opposition to the book due to the nature of my results and I’m truly finding it difficult to believe that people with M.E. would post such comments. I would never have written all of this about someone who recovered and wrote a book for sale, I have been always been really happy for others who recovered and published their story, I either purchased their book or thought it wasn’t for me.

Again, I'm sorry if you felt personally attacked but you really must understand what it feels like from the other side. There can be no opposition to your book due to the nature of your results if you haven't publicly stated a single thing about your results. We have no idea what your book is about. We have no idea if it's relevant to us or not. It rubs people the wrong way to have to purchase your book just to find out if it's relevant or not.

 

[Alea Ishikawa]

On the Robinson paper: Zoe Norris's name is included in the contributors. Assuming most of the 71+ contributors were patients, I decided to investigate her mito score. (Note: I cringe at the paper calling Fukuda criteria "Fukodo," etc.)



Per Norris's book page and Twitter, she was 20 at onset, ill 15 years, and then worked on a book for 4 years:

20 + 15 + 4 = 39


As the paper was done around 2006, I'm guessing Norris was 30 or younger. She wouldn't have tested for mitochondrial function until after onset at 20. So, the 20 to 30-year-olds who are severely ill:

22-year-old with an ability score of 3 and a mito score of 0.62
26-year-old with an ability score of 1 and a mito score of 0.132
29-year-old with an ability score of 3 and a mito score of 0.37

(There's a 30-year-old with an ability score of 5 and a mito score of 0.94, but this is still lower than healthy controls.)

If my assumptions hold true, then there is no question Zoe Norris was disabled.

 

[Esther12]

Hi there Zoe.

I am very sensitive to being called a liar or that what I do is unworthy. No one should have to endure this.

I certainly disagree with the second part of that. Lots of people do unworthy things and many people are liars. Good to call them out on it.

I'm not saying that you're a liar, but it does seem that you're trying to make money from hyping your anecdote as something containing valuable scientific knowledge and a potential cure to sick patients who are desperate to get better. To me, that seems an unworthy thing to do.

If you dropped the hype and just sold this as an 'inspiring personal tale of recovery' or something, then that would be fine. Instead you titled your book: "ME /CFS – a mystery no more. How I was cured. The Science behind my recovery". That's just a groaner, and even if some people might over-react to things like this, it's fair for patients to be irritated by these sorts of grand claims.

Do you think that you were misdiagnosed with ME/CFS? Or do you think that your research has led to you identifying the cause of ill health for a significant portion of people with ME/CFS? Has the testing you refer to shown itself to hold up under blinded conditions?

I'm always pleased whenever anyone's health improves, but I don't like it when they then use this as a way of making money from unfounded claims, and this seems to be what you are doing. I suspect that you just haven't really thought through what you're doing, rather than you're deliberately doing something dodgy, so maybe I shouldn't be this blunt, and maybe some of the other posts here have been too aggressive... but there is a lot of this sort of thing, and it gets increasingly grating over the years.

 

[Undisclosed]

Hello to everyone.
...
As I mentioned on my blog I had come across the details leading to my recovery many times over the years and progression of my illness and simply dismissed it. It was serious, physical and I thought surely it can’t be that serious… in the end the test results indicated it was unfortunately.

Can't you at least say what the test was?

I have done my best to make it available to absolutely anyone who wants to purchase it. I could never afford a kindle or similar device and thought a book would be better received, especially in the UK as originally intended. I always found books easier to read.

Amazon provides free versions of kindle.

A terminal disease is one that a sufferer will soon die of and not recover from regardless of treatment; this is not true of M.E. I was diagnosed with it by a consultant neurologist and I am now fine. I should add he never said M.E. was a terminal illness. Again I know others who’ve recovered.

This is not clear in your blog.

I have had so much support, encouragement and congratulations on both recovering and completing the book from wonderful and kind people - along with lovely and moving comments from people who have read the book so far. So reading through the comments here has been truly awful in comparison. I did expect there to be a certain amount of opposition to the book due to the nature of my results and I’m truly finding it difficult to believe that people with M.E. would post such comments. I would never have written all of this about someone who recovered and wrote a book for sale, I have been always been really happy for others who recovered and published their story, I either purchased their book or thought it wasn’t for me.

I think you have missed the point. The main criticism is that you expect people to buy your book without knowing what is in it. @Zoe there are tons of 'cure' books out there that tell you the cure was based on X and then the specifics are presented in the book. You still won't give us that so how are we to judge if the book might be helpful to us.

I am aware that those with a negative agenda may resort to bullying, perhaps slander, dismiss or generally shout down those who wish to get a message across in a positive way.

The agenda we all have is to get better.

 

[lansbergen]

A terminal disease is one that a sufferer will soon die of and not recover from regardless of treatment;

Is it?????

Terminal is not the phase of a disease after the point of no return is reached?

You say will soon die off but ME patients can survive for decades.

 

[wdb]

I would have thought that anyone with scientific credentials would know that the process does not go case study > publish book, it goes something more like case study > more case studies > invite peers to review work > pilot trial > larger trials, then if after every attempt to falsify your hypothesis it still stands, then you publish your book announcing the mystery is solved.

Otherwise we just end up with hundreds of books like:

How I Cured My Stage 4 Multi Organ Cancer at Home Paperback – 1 Oct 2011
I was rapidly dying from stage 4 Liver Cancer Metastasized into my Pancreas and Left Kidney. My body was shutting down and I was sick and weak. Faced with a certain death, my wife and I were researching to find something... anything to get this mess out of me! We researched all over the world, examining each treatment and mainly the cure claim percentage rate! We bought books and books but most were simply repeats of various alternative protocols and no doubt many worked...

The Cure For HIV And AIDS Paperback – September 9, 1993
53 CURED Cases The First Year -- Cure, not treatment, is the subject of this book. In 1991 Dr. Clark discovered the source of HIV. Once the source became clear the cure became obvious. but would it work? After curing 53 cases in a row, all who used this method, Dr. Clark could wait no longer to present these findings. Since that time many more have been cured, too many to be added to this book. Most important is adding yourself to that list! Electricity can now be used to kill bacteria, viruses and parasites in minutes, not days or weeks as antibiotics require.

 

[Scarecrow]

@Zoe. I want to thank you for taking the trouble to post on the forum. I hope that you realise most of the sceptical comments on this thread are not personal attacks, although I concede that some have gone a bit too far. For the greater part, they are the reasonable responses of people whose hopes have been raised and dashed many times in the past. There is nothing wrong with a 'once bitten, twice shy' mentality.

People who have M.E. themselves will likely be aware of how badly the disease and sufferers have been portrayed in the past and so it is for this reason I am taking great care over the release of my personal medical results and the information I found. I absolutely do not want my personal medical results or any of the personal details to be published, misconstrued or shared about out of context which could alter their true meaning or full understanding.
My medical history is very personal to me yet I have decided to release it – in the way that I wish to. This is very important to me, anyone who has personally had a serious physical illness for many years and as a result lost control over their lives might understand this.

I appreciate how strongly you feel about this and I want to applaud your for providing the detail in your book nevertheless.

It's clear to me that the criticism you have received on this thread has stung you and it seems to me that you didn't prepare yourself for criticism when you wrote your book. So I hope you don't mind it if I give you some advice.

Criticism does have a tendency to sting and it keeps stinging until we work out in our own minds whether or not it's fair. When criticism is unfair, we're told that we should be able to rise above it. That's the ideal. I hope for your sake that you are able to do this. But if you aren't, and you're still hurt by it, then please be aware that you do have the sympathy of many who use this forum.

Then there's fair criticism and I believe that there has been a lot of that here. We don't know you. We don't know if you are the sort of person who won't accept any criticism, the sort that takes your own path no matter what. If you are, then I think that all of our criticism will hurt you - fair or unfair.

I hope you're not that type and that you attempt to understand where others are coming from when they criticise. It doesn't mean that they are always right and that you are always wrong but if you are able to see the reasoning behind the criticism, then the sting will be gone.

And on that score, there is some criticism that I would like to offer you! But I have to go out just now. I will post again later. I hope that you will stick around and respond to it.

 

[Sasha]

Hello to everyone.

Hi Zoe, and welcome to the forums. I'm really glad that you've come here to engage with the criticism over your book, which must have been very hard to hear. I'm delighted that you've recovered so well and I think you can be justifiably proud that you persisted at finding something that worked for you, and that it paid off. We're all engaged in that goal, and we all hope for the same success that you've had.

I put a huge amount of hard work into it as I felt it positive and important. I made the information I found available for those who do wish to purchase it. [...] I absolutely do not want my personal medical results or any of the personal details to be published, misconstrued or shared about out of context [...] My medical history is very personal to me yet I have decided to release it – in the way that I wish to. This is very important to me, anyone who has personally had a serious physical illness for many years and as a result lost control over their lives might understand this.

I completely understand your wishing to keep control of your personal information but I'm confused about what you're saying here. You're publishing your personal details (including your medical results) so presumably you want them known. Don't you want your whole story known to as many people with ME and researchers as possible? That is, don't you want to get your book into as many hands as possible?

If so, there are no-cost ways to do this.

You could:

(a) upload a pdf file of the book to your site and let people download it for free;
(b) publish (cost-free to you) via Createspace on Amazon a print-on-demand paperback that Amazon mails direct to customers - using the calculator based on 60,000 words you could offer the paperback at $10 in the US and £7 in the UK and still make a small profit per book;
(c) publish an e-book via the Kindle at as low a price as you like because there are no material costs - you don't need a Kindle yourself to publish one via Kindle Direct Publishing;
(d) shift your existing stock by getting Amazon to distribute it more cheaply.

https://www.createspace.com/Products/Book/
https://kdp.amazon.com/

You could keep prices low to make your book as affordable as possible to everyone; or make them a little higher so that you have some excess to donate to one of the research charities.

I think that there's a key issue that is giving people concern about the book: that you're keeping secret the key element of the book. This is not normal for health-related books (look on Amazon). The norm is to say, for example, 'I was lucky enough to recover from my ME because tests indicated a surprising problem with mercury, and I was then able to fix it. Here's how you can see if this is likely to be a problem for you, here's info about the relevant treatment, and here's the science behind the issue.'

To say, 'I made a fantastic recovery, I've discovered the secret of ME (your book is called 'ME/CFS - A Mystery No More, so that's your implied claim), buy my book to find out what I'm talking about' is another thing entirely. @Zoe, do you understand that this is the issue that people are having with your book? That this form of marketing is what makes you seem more interested in making money than in helping? And in particular in making money out of your fellow patients?

I hope you can see that I'm trying to help you see things from the point of view of other patients and to help you see that there are other ways to do this. It's not too late to rethink your marketing strategy and its aims.

 

[Roy S]

　
@Zoe in your long blog you wrote:
　
"I honestly feel if I just told you, you would dismiss it too as a cause of illness."
　
Do you think you can read everybody's minds? You also wrote that the cause was covered in a three day first aid course you took. Do you also honestly feel everybody would also dismiss what was in a first aid course?

 

[Sasha]

@Zoe, another important issue that I didn't really address in my post (above) is the title of the book: 'ME/CFS - A Mystery No More'. That title only has one possible reading: that you've discovered the secret behind not only your ME/CFS, but everyone else's.

Is that actually your view?

You mentioned that you hadn't spent much time on ME forums and I wonder if you're therefore not aware that few people would assume that what works for one person would work for another, when it comes to ME. The mainstream view within ME research is that there are probably at least a dozen subgroups, maybe more, with essentially different disease processes that lead to the same loose cluster of symptoms.

This is why your title has also upset people here - because you seem to be claiming the impossible. And because of that, it gives the appearance of a predatory marketing strategy.

My sincere view is that you're a good person who feels that she has important information to share but who hasn't had the information that would have helped her to navigate the difficulties of publication (much of which has changed beyond recognition in the past few years) and has maybe received bad advice about marketing.

Hard as criticism is to hear (as @Scarecrow said), you have a golden opportunity here to profit from the views of the very community who you want to know your story, and to change your approach to one that wears its good ethics on its sleeve. I hope you'll give it some serious thought.