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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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AfME & AYME Guide for Children with M.E.

Discussion in 'General ME/CFS Discussion' started by Esther12, Apr 29, 2014.

  1. Esther12

    Esther12 Senior Member

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    http://www.ayme.org.uk/documents/10228/11022/Your%20child%20and%20M.E..pdf

    Largely full of waffle and anecdotes but I thought I'd post it in case anyone is interested.

    Only really one piece of data, and that's rather misleadingly used:

    Trivially, it was 40%, not 41%. More importantly, 25% of those receiving just SMC reported feeling "much" or "very much" better - so the addition of CBT or GET to patient's medical care, with a large amount of additional therapist time, led to an additional 15% rating themselves as much or very much better.

    That seemed a bit weirdly phrased to me. Not all participants saw mild to moderate improvement, and we didn't have something like an appropriate placebo control that would let us say that the treatments themselves were of real value.

    Really? Maybe they just have really low standards.

    Quackery that, by the standards of AfME, AYME and Esther Crawley, is competent, ethical and caring? I guess that if they do judge themselves by the moral standards of homeopaths, that would explain a lot.

    Is that it? No 'we don't know what holds back recovery, as we don't know what causes the illness'?

    I've just quoted that because it's the only other bit of data provided. The novelty of having them refer to some evidence made it jump out to me.

    Also, I thought I'd compare the descriptions of CBT and GET given in the PACE trial to those given in this document, as to me the AfME/AYME document seems more like a sales pitch than something intended to educate and allow patients to make informed decisions about their own care.

    (I saw this posted on @maxwhd's twitter feed - he retweeted Phil Hammond, who works at Crawley's centre).
     
    Last edited: May 2, 2014
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  2. Cheshire

    Cheshire Senior Member

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    p. 13
    Ouups, maybe Esther should read more carefully this guide, or they should add Lightening Process is an exception…
     
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  3. Min

    Min Senior Member

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    I sincere hope that, rather than compromising their children's health by following unsound advice, parents will instead contact the wonderful, Tymes Trust:

    http://www.tymestrust.org/
     
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  4. Ambrosia_angel

    Ambrosia_angel Senior Member

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    Ayme sadly lies to children straight in the face. I don't really entertain the site anymore. It seems to do very little for actual support of children with face to face social meetings etc unlike other teen charities (tct) or to spread the word about ME. It seems to be very internet focused too. If they got the social aspect right the other stuff would follow but that doesn't seem to happen.

    Also most of them are very naive about ME and the way they treat us in the uk which is annoying but understandable.
     
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  5. maryb

    maryb iherb code TAK122

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    Any study that doesn't include bedbound and housebound patients with ME/ CFS, seriously what is the point of it??????
     
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  6. Wildcat

    Wildcat Senior Member

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    .

    Esther Crawley is the long term Medical Advisor to AYME. The fact that AYME officially condoned Esther Crawley's Lightning Process SMILE Trial, was a significant factor in the West of England Medical Research Ethics Committee giving the proposed SMILE Trial Medical Ethical Approval (according to the West of England Research Ethics Committee itself).


    AFME played the same trick with the PACE Trial.


    Those two so-called ME charities actively condoned (and in the case of AFME, contributed to the design of) research Trials that misrepresent ME, that misrepresent the definition of the disease, and thus produced skewed results.

    Both charities were named in the original Protocols for the trials (AFME PACE; AYME SMILE).

    .
    With 'friends' like that, we are sabotaged on a regular basis.


    .


    .
     
    Last edited: Apr 30, 2014
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  7. Wildcat

    Wildcat Senior Member

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    I have posted this before. The evidence deserves attention, because it could invalidate the SMILE Trial.

    The written material from the Lightning Process website that youngsters and their families on the SMILE Trial were asked to read has since been deemed misleading and unlawful by the UK Advertising Standards Authority.


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


    SMILE Trial Protocol 2010:

    Interventions (Page 2):

    “In addition to the Specialist Medical Care detailed above, young people and their parents will be asked to read the information about the Lightning Process on the Website….”

    .
    .
    Since Dr Crawley’s SMILE Trial was instigated, and proceeded, the Information on Phil Parker’s Lightning Process Website has been deemed Illegal by the UK Advertising Standards Authority (ASA).
    .

    Surely that should cast some doubt on the Trial…. Because the material that the youngsters and their parents were told to read, as preparation for taking part in the Trial… was misleading, Illegal….. and gave the youngsters and their families unrealistic expectations of the Lightning Process.

    http://www.asa.org.uk/Rulings/Adjudications/2012/8/Phil-Parker-Group-Ltd/SHP_ADJ_158035.aspx


    http://www.meassociation.org.uk/2013/03/advertising-codes-breached-in-respect-of-lightning-process-on-phil-parkers-website-27-march-2013/

    http://www.asa.org.uk/Rulings/Adjudications/2013/3/Phil-Parker-Group-Ltd/SHP_ADJ_210374.aspx?utm_source=Adestra&utm_medium=email&utm_term&utm_content=Phil+Parker+Group+Ltd&utm_campaign=2012+Wednesday+Rulings

    .

    .
     
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  8. Min

    Min Senior Member

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    Thank you for the information. Does anyone know where a formal complaint about this can be lodged, please?
     
  9. Wildcat

    Wildcat Senior Member

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    Well Min, we have all been there before.

    There is nowhere a formal complaint can be lodged.



    We could write direct to Dr Esther Crawley - who will not deem to respond.


    We could send the evidence to the West of England Research Ethics Committee - but the Committee will not read our evidence because they are only obliged to accept evidence from the Researcher and the Research Funders......


    Which brings us back to the National [Medical] Research Ethics Service (the NRES)....



    The NRES were sent very many numerous documents of evidence as to why the Lightning Process SMILE Trial on children should not proceed.

    The NRES forwarded the amounts of Evidence to the West of England Research Ethics Committee... who considered it... and still gave Dr Esther Crawley the go ahead to do the SMILE Trial on children, with Ethical Approval...

    So you tell me.....

    In addition, those informed patients and carers who sent researched referenced evidence to the NRES re why the Lightning Process SMILE Trial on youngsters should not proceed, have been repeatedly referred to in the International Media as 'harassers' who 'persecute scientists'.


    Who knows where any formal complaint could be lodged?


    .
     
    Last edited: Apr 30, 2014
  10. Min

    Min Senior Member

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    So the whole thing is stitched up so tight that it is impossible to complain, and any reasonable concern expressed is considered harassment?
     
    Last edited: May 1, 2014
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  11. Min

    Min Senior Member

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    10339708_622949561132907_8034362243915330544_n.jpg ...
     

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