Hell...Hath...No...Fury..
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@wastwater it made me laugh anyway
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I don't think that's the same Zoe Norris. The age is all wrong. The LinkedIn Zoe was doing A levels 4 or 5 years ago. Typically A levels are taken at 17 or so. 'Our' Zoe is about 35.This not the history of a person who has had severe ME for 15 years.
re: her book title isnt even CFS, she refers to the illness as "chronic fatigue" so how much does she truely know about ME.
I don't know why you are saying that because the education and degrees she has matches the linkedIn profile. Unless there are two Zoe Norrises with the same degrees from the same Universities.I don't think that's the same Zoe Norris. The age is all wrong. The LinkedIn Zoe was doing A levels 4 or 5 years ago. Typically A levels are taken at 17 or so. 'Our' Zoe is about 35.
I don't know why you are saying that because the education and degrees she has matches the linkedIn profile. Unless there are two Zoe Norrises with the same degrees from the same Universities.
On her website she said that she was diagnosed with MEWow, she cured an illness called Chronic Fatigue! Good for her!
So why would people with ME buy her book?
On her website she said that she was diagnosed with ME
I'd feel better if she released her book thru a regular publisher and it had been reviewed. I was diagnosed w/out mitochondrial testing.[/QUOTE
By Tammy
From her blog: "I certaintly know there would be some who don't wish me to publish what I have written in the book. I knew there would be negativity and opposition....what I am publishing is not going to sit well with some. The cause in MY case is highly controversial and IF this is the same in all cases of M.E. or "CFS" it is a very, very big deal. I have published it anyway due to its importance. Because of this and the nature of the content this is why I have gone to great effort to self-publish the book and distribute it through my own website myself. This meant that at no point along the publishing process could the book be pulled, delayed or shelved to the point of making it impossible for me to publish once I had gone down their route. It was so important that it was published and available to sufferers"
From her blog: "By law I am not allowed to say this or any book or treatment will help anyone else and by law I cannot advise anyone to undertake or not undertake any particular test or treatment." @ adreno.......I'm perplexed with your second question about believing that some unknown person could solve the mystery of ME/CFS on their own by reading research articles............really? Maybe not the mystery as it relates to everyone who has this illness but certainly for themselves. Isn't that what most of us here are basically doing? Anyway..........it wasn't just research articles (of which their were many) that she used in her investigation.........include biochemistry knowledge, numerous lab tests.......which some she requested herself......because no other so called expert or specialist thought to order it. I don't think you are giving her enough credit.I am actually amazed that anyone would even contemplate buying her book. If I told everyone here that I had now cured ME/CFS on my own, and that you could be cured too, if only you would buy my book, what would you say?
Why would anyone believe that some unknown person could solve the mystery of ME/CFS on their own - by reading research articles - when those researchers who actually wrote the papers hasn't been able to? What a genius she must be! Perhaps someone will also cure cancer by sitting at home and reading PubMed.
From her blog: "IF other ME/CFS sufferers 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."From a very brief look, her approach seems glib, immature and opportunistic, with several shaky premises underpinning it, namely:
I could go on, but I won't. I sense the Dunning-Kruger Effect in operation here, viz. the "metacognitive inability of the unskilled to recognize their ineptitude".
- that she had the same illness as all other PWME
- that the results other PWME get from the tests she had will necessarily be identical to her results
- that the test results she feels were significant in her case were in fact significant in causing and/or perpetuating her illness
- that the treatments she attributes her "cure" to are what effected her "cure"
Whether she was seriously ill is relevant when fraudulent, or even honestly mistaken, claims are under consideration. She is claiming that the treatment that "cured" her condition applies to all people with ME/CFS. It's reasonable to question whether her condition has any similarity to ME/CFS. Her background story does matter.They are clearly different people, and I don't really see speculation as to 'whether she was really that ill' to be helpful.
I am frustrated that she makes grand claims, but then tries to force people to buy her book, but that shouldn't lead to speculation about her past.
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."[
Whether she was seriously ill is relevant when fraudulent, or even honestly mistaken, claims are under consideration. She is claiming that the treatment that "cured" her condition applies to all people with ME/CFS. It's reasonable to question whether her condition has any similarity to ME/CFS. Her background story does matter.
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.What else is making you so angry......besides her not revealing her story on-line.?
How about trying to get rich off sick people? She won't even be clear about what she's selling. Without providing any clear evidence that her treatment plan works, she wants desperate people to send her money in the hope there might be something useful. What is more despicable than playing on the hope of desperate people for personal gain?I understand why members would be angry about her not revealing her findings. I get it..........although she does kind of voice her concerns about this. I too wish she could have shared even a glimpse and went ahead and wrote her book. I am curious though about some of the other negativity. Are members mad because 1. They really don't think she had ME/CFS. 2. Is the word "cured" tripping you up? 3. What else is making you so angry......besides her not revealing her story on-line.?
There is not a test for ME/CFS...there is now a test for ME/CFS which shows why the body is not working and indicates treatment.
. . . based on my test results future researchers looking at the illness will be wasting time, effort and funding . . .
She's brilliant and open-minded and the rest of us are weak-minded idiots who don't want people to get well or are so afraid that a new treatment won't work that we can't even bring ourselves to try it? Really?Of course there may be some who don’t wish those around them to be well. There may be some who fear they will not get the same result that I did.
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?