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Zoe Norris Book - "Chronic Fatigue - A Mystery No More"
- Thread starter Portlandpapou
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Sushi
Moderation Resource Albuquerque
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- Albuquerque
@Zoe.
Thanks for joining the forum and posting here. I know that must have taken courage after reading the posts in this thread before you joined. You mentioned that you hadn't had much experience with ME/CFS forums or time to engage with them. I hope that, now that you are a member here, you will be able to engage with other members on the issues raised in this thread as well as take part in the larger discussions on the forum. Someone with your experience could add a great deal.
This forum is, yes, a place for debate--and we have people who have great medical and research qualifications here whose posts come together in lively discussions.
But perhaps the main role of this forum is sharing knowledge and trying to help each other move toward getting well. This could be a great opportunity for you contribute your experience. If you were to share simple information such as 1) what lab tests were so pivotal for you, 2) what steps helped you recover, it would both be a contribution to the spirit of the forum--helping other patients through our knowledge and experience--but would also increase the sale of your book as members would want to read your full story.
At present you have not given enough information for members to decide whether what was applicable to you, might also be applicable to them. Hence they don't have enough to go on to decide whether or not to buy your book. (And, as others have mentioned, a kindle edition would make that less of a critical financial decision.)
This forum is probably the most active ME/CFS forum in the world so members here would be representative of your prospective audience.
So, how about it? Won't you join in the spirit of the forum and share with us the information I requested above?
Sushi
Thanks for joining the forum and posting here. I know that must have taken courage after reading the posts in this thread before you joined. You mentioned that you hadn't had much experience with ME/CFS forums or time to engage with them. I hope that, now that you are a member here, you will be able to engage with other members on the issues raised in this thread as well as take part in the larger discussions on the forum. Someone with your experience could add a great deal.
This forum is, yes, a place for debate--and we have people who have great medical and research qualifications here whose posts come together in lively discussions.
But perhaps the main role of this forum is sharing knowledge and trying to help each other move toward getting well. This could be a great opportunity for you contribute your experience. If you were to share simple information such as 1) what lab tests were so pivotal for you, 2) what steps helped you recover, it would both be a contribution to the spirit of the forum--helping other patients through our knowledge and experience--but would also increase the sale of your book as members would want to read your full story.
At present you have not given enough information for members to decide whether what was applicable to you, might also be applicable to them. Hence they don't have enough to go on to decide whether or not to buy your book. (And, as others have mentioned, a kindle edition would make that less of a critical financial decision.)
This forum is probably the most active ME/CFS forum in the world so members here would be representative of your prospective audience.
So, how about it? Won't you join in the spirit of the forum and share with us the information I requested above?
Sushi
@Zoe. Further to my earlier post, I'd like to echo what others have said before me. I'm uncomfortable with the secrecy about the contents of your book. The bottom line is that I can't make an informed decision about whether I should buy it or not. I may as well toss a coin.
I'm happy for you that you have recovered but I don't want to buy an autobiographical recovery story. I've been there, done that. I simply wish you well.
I might buy a book that provides a well-argued scientific basis for recovery with appropriate references and I understand that's exactly what you're pitching. The rub is, I'm not sure that your recovery story will necessarily be relevant to me. So, for example, I'm interested in how your ME started. Was it out of the blue following an infection or were there warning signs before an infection? Was an infection involved at all? As @Sasha has pointed out, many experts - not forgetting patients - agree that there are probably different ME subgroups with similar expressions of disease but different causes.
I'd like to know a bit more before I take a punt on your book. I'd most definitely want to know about the nature of the private tests you had that were so significant to you - note that I'm not asking for your personal results. I also don't think it's unreasonable to ask what it was you discovered on the third day of your first aid course.
If you want to exchange information for money - because to be absolutely blunt, that's what you're doing - it's only fair to give people an idea of the information you're selling. For all you know, someone could already have tried what worked for you and not found any benefit. How do you think they would feel having forked out £20 plus p&p? Disclosing these details isn't giving away free information. It would be no substitute for actually buying the book.
With regard to the printed book v. e-book debate, although I do still buy paper books when I can't get an alternative, I far prefer an electronic format. I've experienced reading difficulties since getting ME and print is the most difficult medium for me. I find Kindles much easier to read but any kind of electronic book is preferable to print as it gives more control of typeface, font size and format. I'm surprised that you didn't take this into consideration but perhaps you were lucky enough not to experience some of the more disabling cognitive aspects of this disease, just as I have been fortunate not to experience the more extreme physical aspects.
The last point I wanted to make was about your blog. It's a bit of a red flag for me. You have made five entries of which four have directly been about your book. I therefore conclude that you are not a natural blogger and that your blog is part of your marketing strategy. Now, that's fine in itself but are you aware that this is a strategy often employed by scammers? Please note that I am most definitely not suggesting that you are a scammer (I refer you back to my fair / unfair criticism post) but I have to consider that it's a possibility.
I'm happy for you that you have recovered but I don't want to buy an autobiographical recovery story. I've been there, done that. I simply wish you well.
I might buy a book that provides a well-argued scientific basis for recovery with appropriate references and I understand that's exactly what you're pitching. The rub is, I'm not sure that your recovery story will necessarily be relevant to me. So, for example, I'm interested in how your ME started. Was it out of the blue following an infection or were there warning signs before an infection? Was an infection involved at all? As @Sasha has pointed out, many experts - not forgetting patients - agree that there are probably different ME subgroups with similar expressions of disease but different causes.
I'd like to know a bit more before I take a punt on your book. I'd most definitely want to know about the nature of the private tests you had that were so significant to you - note that I'm not asking for your personal results. I also don't think it's unreasonable to ask what it was you discovered on the third day of your first aid course.
If you want to exchange information for money - because to be absolutely blunt, that's what you're doing - it's only fair to give people an idea of the information you're selling. For all you know, someone could already have tried what worked for you and not found any benefit. How do you think they would feel having forked out £20 plus p&p? Disclosing these details isn't giving away free information. It would be no substitute for actually buying the book.
With regard to the printed book v. e-book debate, although I do still buy paper books when I can't get an alternative, I far prefer an electronic format. I've experienced reading difficulties since getting ME and print is the most difficult medium for me. I find Kindles much easier to read but any kind of electronic book is preferable to print as it gives more control of typeface, font size and format. I'm surprised that you didn't take this into consideration but perhaps you were lucky enough not to experience some of the more disabling cognitive aspects of this disease, just as I have been fortunate not to experience the more extreme physical aspects.
The last point I wanted to make was about your blog. It's a bit of a red flag for me. You have made five entries of which four have directly been about your book. I therefore conclude that you are not a natural blogger and that your blog is part of your marketing strategy. Now, that's fine in itself but are you aware that this is a strategy often employed by scammers? Please note that I am most definitely not suggesting that you are a scammer (I refer you back to my fair / unfair criticism post) but I have to consider that it's a possibility.
I was glad to see Zoe joined us with a few comments, then was promptly disappointed, as her comments failed to address the questions. There is more concern about negativity and a continued tendency to offer hype. It is not slander if it is truth, like feeling frustrated at a strange book marketing tactic.
So I pulled up my e-mail, hoping maybe she had responded. She had. She refunded my order in full, indicating that "sales of the book overseas are under review."
According to her site, it is still available to me in the U.S., so it seems to be a cop-out.
I have heard enough. My ME/CFS library will be missing a title, but I think I can manage.
I agree that it would have been far better to present her story as a recovery story. @Zoe please put it on Amazon and make it available. Others do need to hear about testing stories and outcomes, and you never know when someone else's story could trigger a path to a missing piece.
Few with true ICC defined ME/CFS recover to where Zoe says she is, so of course we want to know what went on. Since, apparently, I do not get to know, I will now turn my attention elsewhere on the forums.
So I pulled up my e-mail, hoping maybe she had responded. She had. She refunded my order in full, indicating that "sales of the book overseas are under review."
According to her site, it is still available to me in the U.S., so it seems to be a cop-out.
I have heard enough. My ME/CFS library will be missing a title, but I think I can manage.
I agree that it would have been far better to present her story as a recovery story. @Zoe please put it on Amazon and make it available. Others do need to hear about testing stories and outcomes, and you never know when someone else's story could trigger a path to a missing piece.
Few with true ICC defined ME/CFS recover to where Zoe says she is, so of course we want to know what went on. Since, apparently, I do not get to know, I will now turn my attention elsewhere on the forums.
Gingergrrl
Senior Member
- Messages
- 16,171
@GracieJ Are you saying that you ordered the book from Zoe and paid your $60 as any other customer and she is denying your order b/c you are a member of PR?
If so, this seems definitive that this book is just a profit making scam. If it was real, I cannot think of any scenario where this would occur? You will do better to donate that money to one of the real ME/CFS charities or buy an alternate book for your library.
If I were to ever get well or reach a fraction of the recovery that Zoe has, I will be shouting it from the roof tops and posting my story for free. Unless there was a way to promote the story to make money for the researchers and charities but I myself would not receive one penny from it.
I think it is time to stop giving Zoe's book any further attention and we have reached the point where negative attention is still attention. When there is a real cure, believe me, we will know about it, and this is not it.
If so, this seems definitive that this book is just a profit making scam. If it was real, I cannot think of any scenario where this would occur? You will do better to donate that money to one of the real ME/CFS charities or buy an alternate book for your library.
If I were to ever get well or reach a fraction of the recovery that Zoe has, I will be shouting it from the roof tops and posting my story for free. Unless there was a way to promote the story to make money for the researchers and charities but I myself would not receive one penny from it.
I think it is time to stop giving Zoe's book any further attention and we have reached the point where negative attention is still attention. When there is a real cure, believe me, we will know about it, and this is not it.
I think denying the sale is about spin control, not necessarily Phoenix Rising. It boggles my mind that a writer now with international interest is shutting down a nearly completed sale. It seems more about dealing with personal fear than anything else.
How soon can we request the thread be closed?
Definitive is indeed a good word in this moment.
Actually, I am excited. $50 gets a lot of used titles on Amazon. Excuse me, gonna go shopping online now...
Bye...
How soon can we request the thread be closed?
Definitive is indeed a good word in this moment.
Actually, I am excited. $50 gets a lot of used titles on Amazon. Excuse me, gonna go shopping online now...
Bye...
Snowdrop
Rebel without a biscuit
- Messages
- 2,933
@Sasha
Thanks in particular for eloquently describing our concerns regarding Zoe Norris' book.
Since the book is expressly written for the benefit of the ME community it seems to me that it would be of some use if @Zoe got to know this community a little better. There are people who have been sick a very long time and who have lost a great deal of their cognitive functioning meaning not only are they unable to be physically active but they struggle with taking in new information.
That said, the book would be no help at all to those with either cognitive issues or those who are struggling financially just to stay housed and fed. More than a few of us fit in this category.
I haven't read everything Ms Norris has posted so I don't know if she has mentioned anywhere exactly her experience with being ill for us to evaluate if her ME resembles our experience of the illness. That would be useful and would not require any sharing of private medical information beyond a description of symptoms and her general experience of being ill.
Thanks in particular for eloquently describing our concerns regarding Zoe Norris' book.
Since the book is expressly written for the benefit of the ME community it seems to me that it would be of some use if @Zoe got to know this community a little better. There are people who have been sick a very long time and who have lost a great deal of their cognitive functioning meaning not only are they unable to be physically active but they struggle with taking in new information.
That said, the book would be no help at all to those with either cognitive issues or those who are struggling financially just to stay housed and fed. More than a few of us fit in this category.
I haven't read everything Ms Norris has posted so I don't know if she has mentioned anywhere exactly her experience with being ill for us to evaluate if her ME resembles our experience of the illness. That would be useful and would not require any sharing of private medical information beyond a description of symptoms and her general experience of being ill.
Perhaps @Zoe has listened to the concerns of people here on the forum and is looking into cheaper ways to provide the book to US readers.
We've given Zoe a lot to think about and I think it's only fair to give her time to consider things and think about the different approach that we've been suggesting. I think it's also only fair of us not to jump to the worst possible conclusions about any new action that she's taking.
Gingergrrl
Senior Member
- Messages
- 16,171
@Sasha Thank you for being so open minded and I am a lot more skeptical these days when I hear something that rings untrue b/c I have been too trusting in the past.
I guess it is hard for me to understand why Gracie wasn't mailed her book after going through the effort to order it and pay for it. But if there is a reasonable explanation than I would love to hear it!
I guess it is hard for me to understand why Gracie wasn't mailed her book after going through the effort to order it and pay for it. But if there is a reasonable explanation than I would love to hear it!
jeff_w
Senior Member
- Messages
- 558
This is the best I can do from the references, can confirm Mercury is theme in the book
35 ..fatigue effects of supplementation with magnesium
36 personal communication by email with Rich Van Kronenburg
37 acute mercury poisoning
38 Mercury in UK imported fish
39 total .. mercury .. tuna fish from Mediterranean sea
40 Preventing disease through .. exposure to mercury
41 Mercury in healthcare .. world health organization
42 Molecular structures of .. mercury alkyl compounds
43 ..safety statement with thimerosal ?
44 ?
45 .. Thimerosal and a ..
46 .. Thimerosal and .. questions and answers
47 Light .. genetic .. of thimerosal? and
48 an assessment of Thimerosal use in childhood vaccines
49 FAQ WHO expert committee on food additives
50 Food standard agency Mercury in imported fish
Gingergrrl
Senior Member
- Messages
- 16,171
@wdb I am confused, did you buy the book? If so thank you for sharing this and now we know the book pertains to patients who have mercury as a potential cause (which would not pertain to someone like me.)
No I don't have the book, that is an image Zoe posted to Twitter.
lansbergen
Senior Member
- Messages
- 2,512
She wants money for what Rich gave for free?
44 Jamieson W.A. and H.M. Powell, “Merthiolate as a Preservative for Biological Products,” American Journal of Hygiene 14 (1931): 218–224.
45 and 46 Global Advisory Committee on Vaccine Safety, “Thimerosal and Vaccines: Questions and Answers,” May 2003, www.who.int/vaccine_safety/topics/thiomersal/questions/en (1 March 2005).
[spoiler: the Global Advisory Committee on Vaccine Safety concluded that there is currently no evidence of mercury toxicity in infants, children, or adults exposed to thiomersal in vaccines. ]
47 Light-induced genetic toxicity of thimerosal and benzalkonium chloride in commercial contact lens solutions. Mutat Res. 1982 Mar;101(1):11-8.
Poisoning. Dr M has tests that look at what toxins, including endotoxins are attached to the electron transport chain and DNA (this is from memory so a bit hazy here) So it is possible that Zoe found out which particular product or toxin was poisoning her and got better. Which is great new for her. I presume poisoning would be covered on a first aid course.