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

[halcyon]

@SOC this is the test she feels is a marker for CFS. She is listed as one of the participants/authors of the Mito ATP study. It's dated 2006.

"Therefore we now have an objective test for chronic fatigue syndrome which also indicates the site of the biochemical lesion, its severity and most importantly gives a clear direction to treatment."

http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/Craig Robinson Paper - Biolab ATP CFS function Study.pdf

Did I miss something or is this paper kind of ridiculous?

Results: There is a clear statistically sound relationship (p<0.001 by Student’s t-distribution)
between the mitochondrial function score and the level of clinical disability.

Conclusion: These results support the hypothesis that CFS is a symptom of mitochondrial
failure.

How are they able to conclude that? Couldn't you just as easily conclude that mitochondrial failure is a symptom of CFS? I don't see how these results could prove it one way or the other.

 

[Esther12]

I can assure you I am not trying to close down the discussion.

Good on you for jumping in with a different opinion... but this book does look like hyped up trash. Maybe she was misdiagnosed and has now found an accurate diagnosis and useful treatment - this happens to lots of people. Turning this into an attempt to make money from other patients is pretty vile. Maybe she just got randomly better - some people do. Again, it's wrong to try to turn your anecdote into an income. Maybe she discovered an interesting and important new finding that will be genuinely helpful to patients... where's the evidence for this though?

We've seen this sort of thing before, and it's always been worthless rubbish.

 

[Mij]

Did I miss something or is this paper kind of ridiculous?


How are they able to conclude that? Couldn't you just as easily conclude that mitochondrial failure is a symptom of CFS? I don't see how these results could prove it one way or the other.

Paypal me $40 and I'll tell you

 

[justy]

The paper being cited above on Mito dysfinction is from Dr Myhills work. The people are Dr Myhills patients and the clinic is Dr Myhills clinic. Many of Dr M's patients have not been to her clinic, but often have tests remotely.

If Zoe is claiming to be better from Dr Myhill's protocol then that is available on her website free of charge to anyone to follow. You do not need the tests anyway as most PWME seem to have similar results and the advice given is pretty much standard for everyone.

I get the impression her breakthrough, whatever that was, came later on and was in addition to the mito dysfunction because Dr Myhill's protocol is not easy, or straightforward to follow and doesn't usually give immediate relief.

Zoe says this about not releasing info for free:

I have to say something I didn’t really expect while getting word out about my book was some asking for me to give to them the details in the book that I’d researched and worked so hard on for free. I know first-hand how terrible an illness it is, I’d suffered hugely for many years. I’d also purchased a number of books on the subject and tried various different private treatments with different practitioners. I put everything I had into getting my health back. I was essentially homeless. I’ve also put a huge amount of effort into writing the book; four years of very hard work in most of my spare time. Two complete rewrites for legal purposes and emailing over 150 contacts for checking and permissions to include various important parts of content. The publishing and printing process has been long, complicated and detailed, more so than I had first imagined. Then once the book had been printed I moved on to developing and paying for the website myself. I have turned down offers of times out to stay in and complete it, I did give up on it a few times but then in the end came back to get it done. I’ve financed it all myself. I’ve come up against stumbling blocks and many costs have been incurred.

What im most worried by is her assertion that future M.E researchers will be wasting their time (and by implication money) because they will miss this simple cure. I would say it is wrong then to not tell them.

Wondering if Jonathon Edwards would like to ask her to tell him what it is as he might be worried that it will jeopardise the UCL Rituximab study if they miss something simple.

 

[Sasha]

This makes no business sense to me. Anyone can set up a no-frills website for free and can publish an e-book for free via Kindle etc. and publish a print-on-demand paperback for free via Amazon - and what's more, they'd be cheap for the reader, not $60. She didn't need to get a load of books printed upfront.

And if a reader buys her book, what's the guarantee that they're going to keep the information a secret?

I can understand someone becoming so poverty-stricken through ME that they feel a desperate need to make money but I think this makes no sense either in business terms or (I'm sorry) ethically.

It's not OK to think that you've found the holy grail of a cure for ME and then hide it behind a big fee and not approach charities to try to get it properly researched.

I feel sorry for Zoe in her situation but I think it would be better for everyone if she said what the key element of this thing was and then priced her book lower so that if people were interested, they could afford it. I think she'd actually make more money that way. I think twenty times as many people will buy a $6 version of her book as a $60 version, so that's more profit for her.

If you think about self-help medical books, they're up-front about what they are. They've got titles like, 'Adrenal Fatigue for Dummies' and so on. They're not hiding what the key issue is - the value is in the detailed content and the rationale.

I'm sitting here sighing. I just find this all very sad. I hope Zoe will come here and read this. There are constructive suggestions about what she can do.

Edit: As I understand it, if you've got a stock of books you can mail them to Amazon (like the publishers do) and they hold them in stock and mail them out if anyone orders. So her back-stock needn't be wasted.

 

[JPV]

This might help answer some questions.

I found the following image, from her book, posted on her Twitter page...

https://twitter.com/MECFSRecovered/status/502526708202106880/photo/1

Here's a link to a larger copy of the photo taken from the source code on the Twitter page...

http://i.imgur.com/cd0pQM6.jpg

The citations are mostly about Mercury and Thimerosal. Rich Van Konynenburg is also mentioned in one of the citations as is a study on the effects of supplementing with Magnesium for Chronic Fatigue.

Nothing really new here, unless she's discovered an innovative treatment regimen to help deal with Mercury toxicity. Bear in mind that this may just a small portion of what the book is really about.

 

[Purple]

This makes no business sense to me. Anyone can set up a no-frills website for free and can publish an e-book for free via Kindle etc. and publish a print-on-demand paperback for free via Amazon - and what's more, they'd be cheap for the reader, not $60. She didn't need to get a load of books printed upfront.

Exactly. And promotion can be free as well via social media.

 

[Purple]

Zoe writes:

Two complete rewrites for legal purposes and emailing over 150 contacts for checking and permissions to include various important parts of content.

"I also write this book in memory of Sophia Mirza, Lynn Gilderdale, Emily Collingridge and every single sufferer who fought the disease and the misunderstanding of it so courageously, but sadly died too young with ME/CFS."

I wonder if Zoe also checked with the families of the deceased that they would be happy for the names of their loved ones used in the book - especially in view of how vehement Zoe appears to be that ME is not terminal or fatal.

 

[John Mac]

If she is financially hard up after finding this cure wouldn't she be better announcing what the cure is and getting people to try it and if the cure works for them ask for a donation. With millions of sufferers worldwide it would only need a tiny percentage to donate a few £'s and she'd be raking it in. But she wants the money upfront before announcing the cure.

 

[Undisclosed]

This book has no assigned ISBN, is not available in public libraries and due to copyright reasons cannot be loaned out to anyone.

What in earth does that even mean?

As far as wanting to make money, it is not unreasonable but to restrict a book to her own website, not state what is in the book, and piss off the people most likely to purchse it is not the way to make money.

I can understand that she wants to make money from her book but she shouldn't expect the public to foot the costs for all her expenses. She could have self-published as an e-book, used all the free advertising and websites that are out there to save a ton of money (as already mentioned). I guess selling a small number at an inflated price rather than a large number at an appropriate price is more attractive to her.

I do wish she hadn't made some of the statments re: there is a cure, no need for further research etc. I wish she would be a bit more transparent re: what is in the book. Saying what it's about likely wouldn't hurt her sales. I certainly would like to know what she did etc

I think this thread would be a good guide to those writing 'recovery' books in terms of what not to do.

 

[adreno]

An example of doing it right would be Terry Wahls. She made no secret what is in her book. I'm sure she still sold a ton of books anyway.

 

[Mij]

I'd gladly send her $2 to provide me a copy of her test results and the treatments she did. I don't understand a whole book here.

 

[Iquitos]

Wow...............it sounds like you know her personally? I'm sorry..............but attacking her for writing in memory of..............come on!

What is so despicable about this is that she says ME/CFS cannot be fatal, then claims to "honor" those for whom it WAS FATAL.

 

[Kati]

An example of doing it right would be Terry Wahls. She made no secret what is in her book. I'm sure she still sold a ton of books anyway.

Wahls is in the same category- selling a miracle cure. There are no miracle cures.

 

[Iquitos]

From the paper she helped write: (In which they repeatedly misspell Fukuda and call CFS a symptom of mitochondrial "failure." And keep mentioning biochemical lesions, which are ???) (Bolding and spacing added by me.) Full paper here: http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/Craig Robinson Paper - Biolab ATP CFS function Study.pdf

Discussion
These results support the hypothesis that one major cause of CFS is mitochondrial failure.

Because mitochondria are a common biological unit, then it is likely that mitochondrial function
in neutrophils will reflect mitochondrial function in other cells. The biochemical lesions result
from several possible mechanisms many of which can be tackled by appropriate nutritional
interventions. Clinical experience has demonstrated the value of the following interventions with
the following biochemical lesions:

Poor levels of ATP can be corrected with D-ribose up to 15 grams daily.
Poor magnesium status can be corrected with oral magnesium supplements or possibly parenteral
magnesium, 50mgs daily.

Slow oxidative phosphorylation can be tackled with supplements of co enzyme Q 10 (up to
300mgs daily), acetyl L carnitine (2 grams daily), vitamin B 3 (niacinamide 500mgs daily).
Translocator protein function can be improved by doing detoxification sweating regimes to
reduce xenobiotic load. This is because translocator protein is often blocked by toxins such as
heavy metals, volatile organic compounds or pesticides. It is also sensitive to pH changes.

When mitochondrial function is impaired there is likely to be excessive production of free
radicals which cause further damage. This can be limited by attention to antioxidant status with
respect to high dose parenteral B12, correcting coenzyme Q 10 levels, correcting levels of
glutathione peroxidase, correcting levels of superoxide dismutase.
Mitochondrial function is also hormone sensitive and so there is a need to ensure optimum
hormonal environment with respect to thyroid and adrenal dysfunction and possibly others.

Indeed many of the authors of this study have started on the necessary regimes and nutritional

supplements to correct mitochondrial function and have seen clinical improvements with

improved stamina, shortened recovery time when they have over-exerted themselves beyond

their expected activity levels and reduced levels of symptoms.

It is very likely there are many ways in which mitochondria can be functionally impaired or
damaged such as immune activation in infectious disease, autoimmunity, allergic reactions (to
foods, inhalants or chemicals), poor antioxidant status, syndrome X with insulin resistance as
well as neurological damage, major organ failures and possibly even psychological mechanisms.
These are all areas which require further research.

Conclusion
The important thing to remember about chronic fatigue syndrome is that it is not a diagnosis, but

a symptom. Obviously chronic fatigue syndrome can occur for standard medically identifiable
reasons such as major organs failures (anaemia, heart failure, respiratory failure, cancer), lack of
sleep, hormonal failures (thyroid, adrenal, pituitary etc), starvation (which may be macronutrient
or micronutrient) or simply “over-training syndrome”. However when these obvious problems
have been excluded, mitochondrial failure due to functional impairment from toxic stress or

micronutrient deficiency is likely to explain a great many cases of chronic fatigue.

Therefore we now have an objective test for chronic fatigue syndrome which also indicates the
site of the biochemical lesion, its severity and most importantly gives a clear direction to
treatment.
Mr Craig Robinson, Convenor of citizens’ paper, March 2006
E mail hunterjames25@tiscali.co.uk"

 

[Gingergrrl]

I wonder if Zoe also checked with the families of the deceased that they would be happy for the names of their loved ones used in the book - especially in view of how vehement Zoe appears to be that ME is not terminal or fatal.

@Purple I totally agree and this to me is the most appalling aspect of the entire thing. She states very arrogantly IMO that she is putting to rest the "myth" that ME can be fatal yet then says she is dedicating the book to those who died of severe ME. I would really hoped she got the blessing of each family AND that she told them what the book was really about and did not mislead them.

If she is just re-packaging Dr. Myhill's work than I hope she has her permission and is quoting it accurately. I have done Dr. Myhill's magnesium by nebulizer treatment (which has been very helpful for me) and is available completely for FREE on her website. I also bought Dr. Myhill's latest book (which is in my huge stack of books to read) but it was very clear that the book was about mito dysfunction, supplements, etc. It did not make any secret or outlandish claims.

It is not the cost of the book that bothers me (although granted it is more expensive than some of the books I've purchased by true ME doctors!!!) but the secrecy and her tone which is quite off-putting. Plus, if she found the secret cure, I promise the top scientists working on this issue would be aware of it.

 

[eafw]

If you think about self-help medical books, they're up-front about what they are. They've got titles like, 'Adrenal Fatigue for Dummies' and so on. They're not hiding what the key issue is - the value is in the detailed content and the rationale.

Yes, it's the weird secrecy that sends up all the red flags. It makes the author come across as a scammer even if that's not their intention, and it is quite unnecessary as plenty of people sell books where they make it quite clear what the content is.

 

[halcyon]

I have to say something I didn’t really expect while getting word out about my book was some asking for me to give to them the details in the book that I’d researched and worked so hard on for free.

She claims to have cured herself of one of the most mysterious diseases of our time and she's surprised when people ask her how? Really?

 

[Hell...Hath...No...Fury..]

The extent to which she has managed piss most of us off with her offensive attitude and opinions, and to get the strong reaction she has had on here almost makes me feel like she's just another Wessley drone; who are all exceptionally experienced at knowing exactly which buttons to press in our community

I know this isn't the case but it has a similar feeling to me.

 

[IreneF]

"This book has no assigned ISBN, is not available in public libraries and due to copyright reasons cannot be loaned out to anyone."

In the US I don't think you can restrict distribution of a book like that.