The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Zoe Norris Book - "Chronic Fatigue - A Mystery No More"

Discussion in 'General ME/CFS Discussion' started by Portlandpapou, Jan 27, 2015.

  1. Portlandpapou

    Portlandpapou

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    Read a Twitter post from Zoe Norris in the UK - @MECFSRecovered - she claims she has cured her own ME/CFS after 15 years of illness, using her own protocols after years of false trails. Her book is only available through her website: http://www.zoenorris-mecfs-recovered.com/
    Has anyone out there read this book? The information on her blog and website is very vague - seems you have to buy the book to get any information of substance.
     
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  2. Esther12

    Esther12 Senior Member

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    Sounds like a complete waste of time to me.
     
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  3. Snowdrop

    Snowdrop Rebel without a biscuit

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    Never trust a lack of transparency.
     
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  4. halcyon

    halcyon Senior Member

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    Agreed. I would be very surprised if she did anything that 99% of us already haven't tried with no success.
     
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  5. Kina

    Kina

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    Zoe Norris said:
    I am taking a big stab in the dark here but I think she is referring to the test offered by Dr Myhill RE: mitochondrial dysfunction. Her name is associated with this:

    http://www.theoneclickgroup.co.uk/d...son Paper - Biolab ATP CFS function Study.pdf

    If this is true, then you can find the information on Myhill's website without having to pay for the book written by this person. Myhill has also written a book but you can find all the information in the book cached somewhere on the internet (maybe search Myhill on our site because there is a link to the information in the book).

    I wouldn't pay for the Zoe Norris book without knowing what is in it. There are many that publish books after a 'cure' but they are usually always about diet, supplements etc.
     
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  6. Scarecrow

    Scarecrow Revolting Peasant

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    You are absolutely correct. But the crucial bit of the story are the tests she got after that. I'm intrigued but annoyed. I may order. I've got that feeling you get when you're playing poker - you know your hand is beat but you just HAVE to call.

    My nose is bothering me.
     
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  7. Portlandpapou

    Portlandpapou

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    I have the same urge to buy the book, but I always lose at poker with that strategy!
     
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  8. Snow Leopard

    Snow Leopard Hibernating

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    Looking at those claims, the old feelings of hope, combined with fear of the (usual) disappointment when its nonsense and doesn't work (when you try it anyway).

    http://www.zoenorris-mecfs-recovered.com/about.html (a few details)

    Personally, the vagueness is disappointing. It is possible that her recovery was spontaneous, or she found something that is specific to her, that won't help the rest of us. But we all want to find a cure right? (If I was cured, I'd be working in medical science to do trials and uncover the details of how it works, personally...)

    But we won't know unless we hand over our cash right?
     
    Last edited: Jan 27, 2015
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  9. IreneF

    IreneF Senior Member

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    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.
     
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  10. Kati

    Kati Patient in training

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    Dish your money, I will show you the secret of recovery ;-)
    Feeding on people's despair.
    Enough said.
     
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  11. Scarecrow

    Scarecrow Revolting Peasant

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    No, that's Alex Howard at the OHC ;)
     
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  12. Woolie

    Woolie Senior Member

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    I am utterly fed up with these people telling us they have the "secret"!:mad:

    The damage they do is immense - by raising false hope (which is then most often dashed), by encouraging investment in costly and time-consuming diagnostics/treatments/books of little value, and by oversimplifying the illness and even minimising its severity in the minds of others.

    Plus, we are so vulnerable, because we're so desperate. They take advantage.

    And don't get me started on the ethical standards of these people - if I were lucky enough to stumble upon the "secret" for curing my ME, I would share it right here, free of charge.
     
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  13. Woolie

    Woolie Senior Member

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    Speaking of fury at the quacks out there offering us false hope - I'd love to hear everyone's most infuriating stories! Will you share?

    This is mine: Over dinner, an osteopath promised that he could cure my CFS by realigning my brain's energies and directing toxins away from the brain. And his technique did not involve actual contact with my skin - the hands would be maintained several inches from my head, where they are still sufficiently close to be effective at realigning energies!

    This guy was a dinner guest. So I bit my lip, smiled and thanked him. But inside I was boiling mad that he should have the nerve to presume he had the answer to my complex 25-year illness. I'm sure he truly believes in his own cure, but that doesn't make it okay in my opinion. He still has no right to make such claims until proven. When I see a published study with a well-defined group and proper placebo control/blinding with high rates of complete recovery - then we can talk!

    Seriously, making those sorts of claims to a sick person with an incurable illness should be made a crime.
     
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  14. Alea Ishikawa

    Alea Ishikawa

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    I think I would also be careful on this one.

    Zoe Norris states that she does not have book reviews due to the potential for negativity.

    Did she miss the HSP60 finding? Dorsal root ganglionitis found in Sophia Mirza? This is genuinely confusing to me.



    @Scarecrow - Zoe Norris states she got test results from Dr. Myhill. Also see Page 5 teaser on the "new" mitochondrial function test, etc. There's a tweet from Norris:
    There are lots of little teasers lacking detailed information, pics of her transformation, links to her product. She mentions things of worth are neither easy nor free. It genuinely sounds like a sales pitch.



    I would wait for proper reviews on this one. It also might help to talk to one of the people who have bought her book - you can see some of them via Norris's Twitter feed. You could always buy the book in retrospect to support her. You could also ask to borrow or purchase the book at a reduced price, secondhand.
     
    Last edited: Jan 29, 2015
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  15. beaker

    beaker ME/cfs 1986

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    I think you need to start a new thread on these stories ! I know I have more than one whopper.
     
  16. IreneF

    IreneF Senior Member

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    Reading Norris's statement about reviews and negativity makes me wonder how she expects anyone with cognitive difficulties to read anything she's written. I couldn't finish her statement. I just got bogged down, and she didn't address what I feel are legitimate reasons to be suspicious of the One True Cure.
     
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  17. Kati

    Kati Patient in training

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    Indeed. i can't read books and audiobook are actually worse.
     
  18. Wildcat

    Wildcat

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    Zoe Norris doesn't appear to have grasped that playing teasing games with sick people is a bad idea.


    http://zoenorrisrecovered.blogspot.co.uk/2014/10/coming-back-to-mecfsand-running-away.html

    "Since recovering I undertook a first aid course as a requirement of my job, it was a 3 day course for professionals to meet health and safety act requirements. It was an interesting and detailed course, well presented by a fantastic emergency nurse with years of experience in the accident and emergency hospital department. On the last day of the course he covered the cause of illness as had been found in my case.... in a first aid course and so it is indeed known about yet still it hadn’t been investigated in all my years of illness by the NHS."

    Continues:

    "Unfortunately I have found that terribly, some are spreading a myth that ME/CFS is incurable. It most definitely is not. People I know personally have made full recoveries from ME/CFS, they’ve gone on to have normal and very active, busy lives even after many years of debilitating illness, without any recurrence of symptoms. I’ve also heard of others who have recovered through people I have met. Nearly everyone I speak to knows someone who has, or who has recovered from, ME/CFS.

    Who is benefitting from communicating this lie that it is an incurable disease and so sufferers will never recover? Certainly not those suffering with the disease.

    This seems to be a relatively new thing. While I was still unwell it was communicated that recovery is indeed possible from ME/CFS - that people do recover completely and get their full physical ability back. I was severely ill with ME/CFS for over 15 years and now hereI am fully recovered too so there you go! No need to spread the lies any more. It is completely untrue that there is no cure or effective treatment. In my case it was basic, simple and low cost BUT it took a huge amount of testing, research and a process of elimination to get to the bottom of what was actually biochemically wrong. The illness had a definite and identifiable specific underlying biochemical and physical cause which then leads to very real and awful physically disabling problems in the body.

    To be truthful I am disgusted that some are spreading the rumour that ME/CFS is incurable and doing this is truly dangerous. If you have ME/CFS ignore these people completely; they have their own personal negative reasons, or possibly an agenda, for doing this and it’s not going to help anyone recover to get on with active lives again. No-one knows if any particular person can or will be cured until the relevant correct tests and treatment are obtained. In my case these were not until I went for private medical tests by accredited laboratories.

    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.

    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. I can understand that, I took many chances along the way. I still took them though – if I hadn’t I wouldn’t be where I am today."


    ~~~~~~~~~~~~~~~~~~~~~~~



    Zoe has put me right off her book already. And she has made a serious misjudgement in using teasing/taunting tactics to create interest in her book.

    .
    .
     
    Last edited: Jan 29, 2015
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  19. adreno

    adreno PR activist

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    If she was interested in anything but money she could simply post her tests and treatments. But she isn't, it seems.

    Quite disgusting when someone tries to lure sick and desperate patients into buying their book, by alluding to a secret cure of ME/CFS that only they know about. I am certain that whatever is in her book is absolute junk, as everyone here knows there are no definite tests or treatments that work universally for ME/CFS patients. To say that there is, is just blatant lying. If something like this existed, and many had been cured, the news would have spread like wildfire.
     
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  20. justy

    justy Donate Advocate Demonstrate

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    When I discover the ultimate underlying cause of my M.E and successfully treat it I will be posting a full page article on Phoenix Rising with full disclosure of all relevant facts.

    I would happily PAY myself to advertise the news in a national Newspaper if it could help just one other patient.
     
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