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ME Children: False Allegations of Child Abuse in Cases of Childhood Myalgic Encephalomyelitis (ME)

Discussion in 'General ME/CFS News' started by Wildcat, Oct 14, 2014.

  1. Wildcat

    Wildcat

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    In July (2014) Tymes Trust Director Jane Colby’s Paper entitled 'False Allegations of Child Abuse in Cases of Childhood Myalgic Encephalomyelitis (ME)’ was published in the peer reviewed journal ‘Argument and Critique’.


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    NEW CAMPAIGNING BOOKLET 'False Allegations of Child Abuse in Cases of Childhood Myalgic Encephalomyelitis (ME)' at http://www.tymestrust.org/tymespublications.htm

    Free printed copies for members, groups, supporters for distribution and campaigning, subject to availability. Ask! Send your details to Tymes Trust via our Contact Us form at http://www.tymestrust.org/contactus.htm


    The purpose of this booklet is to make Jane Colby's peer reviewed paper accessible for campaigning purposes. Doctors, schools, family relations, press and media, all need to know what is happening to families and also need to understand that it typically follows the failure of management regimes which families are expected to keep to. Families report that such regimes are unrealistic and do not take account of the true lived experience of the child's illness.

    Please read and share the following email Alert from Jane Colby:




    CAMPAIGN

    In July, my paper 'FALSE ALLEGATIONS OF CHILD ABUSE IN CASES OF CHILDHOOD MYALGIC ENCEPHALOMYELITIS (ME)' was published in the peer reviewed journal Argument and Critique.

    Following the paper's favourable reception by the ME community and by others including US paediatrician Dr David Bell, who specialised in ME for many years, Tymes Trust is now inviting you to help distribute a new booklet containing the paper.

    You can see the booklet at
    www.tymestrust.org/tymespublications.htm




    On Monday 13 October, I will be presenting the booklet at a training
    session for students entitled 'Understanding ME' at Bishop Grosseteste University, Lincoln. This will be its official launch.

    All members of the Trust will shortly receive their printed copy of the
    booklet through the post, with a note from our Chair inviting you to help with the campaign.

    As you know, 2014 is our 25th Anniversary year. Our theme is FIGHTING INJUSTICE. This paper is a vital tool in spreading knowledge of the injustices faced by many families of children with ME.




    TREATMENT INEFFECTIVE OR HARMFUL

    The paper in the booklet does not just address false allegations. It also gives a clear, referenced analysis of why exercise treatments and graded programmes of school attendance may often make children worse, as reported to the Trust week in, week out. It examines why such activity management programmes are still being imposed on families despite the frequently reported negative outcomes. And it addresses the difference between ME and CFS, explaining the confusion that has resulted from the adoption of the terms Chronic Fatigue and Chronic Fatigue Syndrome. Full
    information about the Trust is included.

    So the booklet is a tool with which you can educate your school and your GP, and back up your requests for the type of education and general lifestyle which your child needs and is entitled to, in order to make the best recovery possible whilst still not missing out on a good education.

    It is a parent's legal right to choose how to look after their child. If
    you want to discuss this, please phone our Advice Line on 0845 003 9002.




    TYMES TRUST IS NOW ON FACEBOOK
    www.facebook.com/tymestrust

    Please visit our new page and Like us! This page has been launched to coincide with our 25th Anniversary year, and will feature reports and other matters.

    You can also follow me on Twitter @JaneCColby and follow the Trust
    @tymestrust

    With all best wishes

    Jane




    Jane Colby FRSA
    Executive Director
    The Young ME Sufferers Trust
    PO Box 4347, Stock, Essex, CM4 9TE
    www.tymestrust.org
    Tel: 0845 003 9002

    Holder of The Queen's Award for Voluntary Service:
    The MBE for Volunteer Groups

    ======


    READ ALL PREVIOUS ALERTS AND SUBSCRIBE TO MY LIST AT www.tymestrust.org
    To unsubscribe, send an email via the website Contact Us form.

    ======



    You are welcome to redistribute or reprint this email without
    seeking our permission provided: 1) you do not abbreviate, add
    to, or change the text in any way; 2) the authorship information
    is retained; and 3) www.tymestrust.org is credited as the source.


    Jane Colby is Executive Director of The Young ME Sufferers Trust.
    She was a Headteacher for nine years, a member of the government
    Chief Medical Officer's Working Group on CFS/ME and co-authored
    ME/CFS In UK Schools, the largest epidemiological study of ME to
    date. She is a life member of the National Association of Head Teachers and a Fellow of the Royal Society of Arts.

    Copyright (c) 2014 The Young ME Sufferers Trust
    .

    .
     
    Last edited: Oct 14, 2014
  2. Sasha

    Sasha Fine, thank you

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    I wish that the title were less ambiguous. It could be read as though children with ME make false allegations of child abuse. There is, of course some (highly questionable) research linking CFS (broad definition, I believe) to childhood abuse and so this would seem to be a mistake that could be easy to make.
     
    Snow Leopard likes this.
  3. Wildcat

    Wildcat

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    Can you suggest a better title? I struggled with finding a short title. Its difficult, because the title of the threads appear in a shortened form on the Forum Main Page. I wanted to make sure people know it is about ME children. If it said 'False allegations etc... the fact that it is about children with ME would have been obscured on the Main Page.

    The likelyhood of the thread title being interpreted as 'children with ME make False Allegations' is pretty remote.


    (By the way - it was Jane Colby of the Tymes Trust who released the document of 'behind the scenes' emails that went on in the early days of the MRC Collaborative (obtained by FOI) )
    .
     
    Last edited: Oct 14, 2014
  4. Wildcat

    Wildcat

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    Sasha wrote: "There is, of course some (highly questionable) research linking CFS (broad definition, I believe) to childhood abuse and so this would seem to be a mistake that could be easy to make."


    The numbers of families of children with ME in Brtiain who have been subjected to Child Protection Investigations (over decades) should be of the greatest concern to the ME Community.

    Janes Colby's Tymes Trust Reports explain in which circumstances the false allegation tend to occur. Dr Nigel Speight has also witten and given video interviews on this subject. Often it is a school attendance issue that sparks off the Investigations, as Dr Speight has described, or it can happen when a child goes from moderately to severely ill, or does not respond to exercise treatment.
    .
    Its worth reading the Tymes Trust Reports to get a better idea of how these terrible situations occur.
    .
     
    Last edited: Oct 14, 2014
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  5. Scarecrow

    Scarecrow Revolting Peasant

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  6. Wildcat

    Wildcat

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    This 1999 BBC Panorama Documentary Transcript describes how youngsters with ME as young as 9 were held in psychiatric wards and subjected to Graded Exercise (GET) against their will, and against the wishes of their parents, and how much more sick they became, and also became actually traumatised, as a result of forced mistreatment and forced separation from their families . One of the ME mistreatment Scandals. The youngsters and parents in their own words.


    BBC Panorama Documentary 1999 ‘Sick and Tired’ (in conjunction with ME Children’s charity Tymes Trust).

    ‘ME children treated as mentally ill’

    TRANSCRIPT - PANORAMA "SICK AND TIRED"
    http://news.bbc.co.uk/hi/english/st.../panorama/transcripts/transcript_08_11_99.txt

    .
     
    Last edited: Oct 14, 2014
    Invisible Woman and Valentijn like this.
  7. Scarecrow

    Scarecrow Revolting Peasant

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    Cancel that request. The first link works!
     
    Wildcat likes this.
  8. Wildcat

    Wildcat

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    Links to Tymes Trust Guidelines for Parents, Professionals (Doctors Teachers, Social Workers), and Official Reports by Jane Colby and the Tymes Trust (The Young ME Sufferers Trust, ME Children’s Charity).

    http://www.tymestrust.org/
    http://www.tymestrust.org/tymespublications.htm



    Including:

    A Good Practice Guide to Education for Children with ME

    For GPs, schools and families. Includes Statement on Virtual Education by Jane Colby at the House of Lords.



    Child Protection Issues

    A presentation to the All Party Parliamentary Group on ME. 2008.



    Revisiting the 2002 Department of Health Report on CFS/ME

    Excerpts from the Children's Chapter of the Chief Medical Officer's Working Group Report, with sections on Education and Child Protection. We hope this information will assist families, doctors and teachers.



    The Forgotten Children - A Dossier of Shame

    Tymes Trust presented this document to the Prime Minister on the 12th of May 2003. It details shocking statistics the Trust has collated from information supplied by families of children with ME.



    Succeeding with ME

    The "virtual classroom" revolution. Learn at home whilst interacting online with a teacher and other pupils. How the Tymes Trust/Nisai Education partnership formed in 2004 can help children with ME throughout the UK.



    Our Needs Our Lives

    What young people with ME and their families want from a CFS/ME clinic - results of a detailed survey conducted by the Trust. We hope that this report will help you lobby for the services you need in your area.

    .
     
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  9. Sasha

    Sasha Fine, thank you

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    It's not your title I'm concerned about, it's the title of Jane Colby's paper itself. But it has already been published (back in July) so there's not much to be done about it. It's just unfortunate.
     
  10. Wildcat

    Wildcat

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    @Sasha

    You mean you are concerned about the title of Jane Colby's document

    "'False Allegations of Child Abuse in Cases of Childhood Myalgic Encephalomyelitis (ME)’"

    Perhaps you could contact Jane Colby with your concerns that her title (in your view) could be construed as ambiguous.

    BTW - have you actually read any of the Tymes Trust Reports from the Links I posted?

    I would have thought that the Content of the Tymes Trust Reports would be of much more concern, and more worthy of discussion, than the title.
    .
     
    Last edited: Oct 14, 2014
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  11. Sasha

    Sasha Fine, thank you

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    Yes, that's correct - my concern is about the title of the document but the paper has been published with that title and it sounds as though the campaigning booklet has already been printed so I don't know that there's much point in contacting Jane Colby about it.

    No, I haven't read any of the reports - I don't need to do that to be convinced of their worth.

    It wasn't my intention to seem to be knocking the project with my comment - just a concern about the title.
     
    Wildcat likes this.
  12. Wildcat

    Wildcat

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    Child Protection Issues (in ME)

    A presentation by Jane Colby, Director of the Tymes Trust, to the All Party Parliamentary Group on ME (APPGME). 2008.
    .
     
    Last edited: Oct 16, 2014
  13. Wildcat

    Wildcat

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    Statement by Jane Colby, Director of the Tymes Trust. 29 September 2014:


    ‘Tymes Trust Executive Director Jane Colby was as usual on the panel at MEA Question Time last Saturday 24 September, hosted by OMEGA in a lecture theatre at an Oxford college.


    One issue discussed at length was the erroneous social services investigations of families whose children have ME, often sparked by schools or doctors. The number of families we have assisted in this respect is now up to 125. So far none of these families have been found guilty of anything.

    Commonly, such cases are sparked by paediatricians wanting to impose graded exercise or physiotherapy and school attendance. They often seem convinced that such methods will work, and will effect an improvement. They do not accept it at face value when parents say that these management regimes make their children worse and withdraw them from the regime, requesting home or virtual tuition, as is their educational right. Suspicions then arise, social services are informed and have to investigate.

    From the Trust's point of view, this was a valuable event because not only were we able to supply information in reply to a wide variety of questions, but we also met a number of parents who gave us good feedback. Thanks to all of you for your encouraging words about our work.’



    https://www.facebook.com/tymestrust?fref=ts
    Tymes Trust FB Page, recently set up.
    .
     
  14. golden

    golden Senior Member

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    Clear Light
    Thanks Wildcat
     
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  15. CantThink

    CantThink Senior Member

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    I've been reading with interest and downloaded some of the publications to slowly go through. Thanks for posting this Wildcat.
     
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  16. Wildcat

    Wildcat

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    The latest statement by the Tymes Trust (ME charity for children, young people and carers). 5th December 2014:


    ‘LATEST Child Protection case numbers Tymes Trust has handled are now up to 137. A new one came in this week. These families are facing, or have faced, varying degrees of suspicion/allegation, some involving court action. So far none of these families has been found guilty of anything.

    You can spread news of what is happening so that people who might otherwise misunderstand why a child with ME can be so severely ill, and for so long, can appreciate the wider picture. Point them to our 2014 booklet on False Allegations. This is a peer reviewed paper by Jane Colby, for an academic journal. It explains how and why the relentless pursuit of families whose children have ME is going on.’


    Find the 'False Allegations' booklet and many other useful publications at

    www.tymestrust.org/tymespublications.htm
    .
     
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  17. AndyPR

    AndyPR Senior Member

    False Allegations of Child Abuse in Cases of Childhood Myalgic Encephalomyelitis (ME) is now available as a PDF from Tymes Trust - http://www.tymestrust.org/pdfs/falseallegations.pdf

    (It probably has been for ages but they just posted the link on their Facebook feed).
     
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