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

[Tammy]

I am not sure the negativity wouldn't still be there about her story...............even if she did reveal................and I think she alluded to this in her blog. I think she was afraid of this and really didn't want to deal with debating. BUT...........like I said before..............I personally think she should have shared the information.

 

[Aurator]

What is more despicable than playing on the hope of desperate people for personal gain?

Playing on the hopes of desperate people for personal gain and in the same breath invoking the memory of the dead to show you have a compassionate side. It plumbs new depths of poor taste.
This is taken from the back of her book:
"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."

 

[Tammy]

Personally I'm not angry. But imagine if someone said they'd found a cure for cystic fibrosis but they weren't prepared to tell the thousands of sufferers, many of them children, what the cure was unless they or their families first handed over a sum of money.

That is actually the better of two scenarios. The worse is the scenario in which you hand over your money and find the cure is no cure at all.

Is it not fair to say there's something distasteful and morally questionable in either of these situations?

As I said in previous post.............I understand the anger over her not revealing but through her book...........my question was about other things.

 

[Wildcat]

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The concerns raised in this thread about Zoe Norris's book, about her style of publicising it, and about her sweeping claims, are all valid concerns. Those concerns should not be dismissed under the blanket term "negativity", which is a word used too often to close down discussion, and in particular to silence critique.. And constructing the people who do the critiquing as "angry" is seen all too often these days; that's become a convenient means of portraying those who make reasonable criticism as being ruled by emotions and therefore not reliable or reasonable. Such portrayals undermine valid critique.
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[Tammy]

Playing on the hopes of desperate people for personal gain and in the same breath invoking the memory of the dead to show you have a compassionate side. It plumbs new depths of poor taste.
This is taken from the back of her book:
"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."

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

 

[Tammy]

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The concerns raised in this thread about Zoe Norris's book, about her style of publicising it, and about her sweeping claims, are all valid concerns. They should not be dismissed under the blanket term "negativity", which is a word used too often to close down discussion, and in particular to silence critique..
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It's of course ok to have valid concerns..................but imo a lot of the posts are not only negative but the underlying tone sounds very attacking with way too much pre-judgment. Geesh. About her style of publishing her book.............she explains in her blog...........and it sounds sensible to me. I quoted her response about why she decided to self-publish in a previous post.

 

[Wildcat]

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@Tammy and All -

Zoe Norris has denied that ME is terminal. In the most offensive terms.

"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."


We have seen the deaths of named ME sufferers being used in publicity for supposed commercial 'cures' before. It is offensive. It is clear that Zoe has not read the ME Memorial list.

We also recognise the style of publicising from numerous previous publications and courses by people claiming to have cured themselves of 'ME'. All too often it transpires that they didn't have ME in the first place; they 'cured' themselves of a completely different condition (Esther Rantzen's daughter for a start).



It does not encourage discussion on this site when one's posts are characterised by other members as "negative" "angry" and "attacking".

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[Mij]

@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/d...son Paper - Biolab ATP CFS function Study.pdf

 

[Tammy]

Some of you may think I may be too sensitive about this thread.............but I've had way too much experience with feeling pre-judged with this horrible illness. Friends, family, etc. coming to their all too wrong assumptions about me and it feels really really bad. It feels like a pack of wolves have been unleashed on this thread.

 

[Tammy]

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The concerns raised in this thread about Zoe Norris's book, about her style of publicising it, and about her sweeping claims, are all valid concerns. Those concerns should not be dismissed under the blanket term "negativity", which is a word used too often to close down discussion, and in particular to silence critique.. And constructing the people who do the critiquing as "angry" is seen all too often these days; that's become a convenient means of portraying those who make reasonable criticism as being ruled by emotions and therefore not reliable or reasonable. Such portrayals undermine valid critique.
.

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

 

[Aurator]

It feels like a pack of wolves have been unleashed on this thread.

Your thirteen posts don't exactly make you look like a sheep, and the fact that you're claiming the moral high ground is kind of consistent with your failure to recognise the unctuous and disingenuous side to Zoe Norris' book.

Ultimately, there are two possibilities about this book: either it is a crock of gold and worth every penny, or it is a crock of...something far less valuable. All of the evidence we've seen points very strongly to it being the latter.

 

[SOC]

Playing on the hopes of desperate people for personal gain and in the same breath invoking the memory of the dead to show you have a compassionate side. It plumbs new depths of poor taste.
This is taken from the back of her book:
"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."

Yeah, that's great when coupled with her 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.

So does she think Sophia died of ME or not? Or is she implying that we're all so stupid as to think we are all going to die from ME/CFS? I've never heard anyone say that, has she?

Where are you getting that she is making the claim that the treatment that "cured' her condition applies to all people with ME/CFS............did you read her blog? I will state again from her blog as I did three posts ago. From her blog: "IF other ME/CFS have the same underlying biochemical cause that I had, I believe patients are going to need to pull together and take their own action themselves to get it investigated and treated correctly."

And where is that big fat IF on the website where she's actually selling the book?

Why does she imply that patients are not pulling together and taking their own action themselves if her "cure" only applies to a subset -- one she won't specify -- of ME patients? Maybe most of us have tried her Magical Mystery Cure and it didn't work for us because we have a different illness than she did. If it's a question of " IF other ME/CFS have the same underlying biochemical cause that I had..." then shouldn't she be specifying what that underlying biochemical cause is so that patients don't waste their money on a treatment that is clearly not going to work for them? No, she wants us all to buy her book with no evidence that it has any application to us whatsoever.

I think a question more relevant than, "Why are so many people angry" is "Why are some people so gullible that they believe anything someone says on the internet without asking for reasonable evidence?"

Just in case you didn't know, I'm a French model. I'll even say so on my blog. I died of cancer, though, so send money to my poor starving children... in Nigeria.

@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

Yeah, well. There have been a lot of people who thought they had THE test for CFS and a clear direction to treatment.

 

[SOC]

Some of you may think I may be too sensitive about this thread.............but I've had way too much experience with feeling pre-judged with this horrible illness. Friends, family, etc. coming to their all too wrong assumptions about me and it feels really really bad. It feels like a pack of wolves have been unleashed on this thread.

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.

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.

 

[Wildcat]

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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.
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[Mij]

Yeah, well. There have been a lot of people who thought they had THE test for CFS and a clear direction to treatment.

I'm just curious to know what her defect was, whatever treatments she did helped her. I'm not buying her book to find out though

 

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

After re-reading those paragraphs above from Zoe, it doesnt seem a good move to be patronizing and insulting to a large group of people who she claims she wants to help. After those kinds of comments it doesnt really make you want to read it

All she seems to be giving away for free is an advertising plug for the mitochondria test (which has just re-opened for new patients again this month co-incidently)

All we ever read is; buy my book, buy my book, then we wander over to dr. myhill's website that also says, buy my book, buy my book; linked within the info. (Which i did buy a while back)

I'm sick of buying cure books when it could go on something useful like feeding myself :thumbdown:

I used to be very interested in the mitochondria test for many years but since talking to Dr. Newton about it. I put my hand back in my pocket again and held on to my money. I'm still torn on the subject regardless though as desperate people are

I think most of us here would be proud to share with others anything that remotely helps us, for free; as so many have already here.

It would be an honour to be able to potentially help others especially when we know just how much it means to all of us. I think this is why many here are struggling with the manner in which the book is plugged; without even mentioning the price.

At least after 15 years of buying cure books i have a hefty pile of fuel for the campfire when i eventually can't afford heating so they'll at least cure me of hyperthermia for a few hours

 

[SOC]

I'm just curious to know what her defect was, whatever treatments she did helped her. I'm not buying her book to find out though

Given that she's in the UK, where they practically give out a "CFS" diagnosis if you're tired after a poor night's sleep, she could have had any of a thousand defects, none of which apply to ME.

Or maybe she does have the Magical Mystery Cure no expert researcher has figured out yet (brilliant woman). Too bad she won't share with the rest of us desperate sick people.... unless we pay her a big chunk of change.

 

[Mij]

I don't understand how someone who said she was ill for 15yrs would have such little compassion and a disingenuous approach to selling her book to people who are suffering and became poor as a result of losing their health. It's just disgusting.

 

[IreneF]

Re the paper from oneclick: there is no evidence that anyone has been successfully treated with these supplements, and saunas would be devastating to a person with low blood volume. What I'd like to see is some kind of clinical trial using the Canadian criteria.

Plus the concluding paragraph is incredibly muddled. CFS is not a symptom; it is a syndrome, and no one knows what causes it.

Perhaps we should have a fund to support people who want to buy and review books.

 

[Gingergrrl]

@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

@Mij Thank you for finding and posting her paper and she should state in her book that she has a conflict of interest with this study and test. I read the entire paper and nothing explains what the "biochemical lesion" is that they allude to and if they really found one that was a biomarker for ME, then I promise you that the scientists at OMI or INIM would know about this!

They are testing magnesium and many other standard tests and even when you learn that you are not able to hold electrolytes within the cell, there is no treatment that I know of beyond supplementing electrolytes, fluid and salt loading, etc. They also used the Fukuda criteria for her study which used patients who were well enough to come to their clinic (so no one homebound.) This is pure nonsense IMO.