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NHS invite comments on their promotion of dangerous advice for parents of ME children

Discussion in 'General ME/CFS News' started by Countrygirl, Jan 22, 2014.

  1. Countrygirl

    Countrygirl I'm with Cheesus

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    Apologies if this has been posted elsewhere.

    I found this today under the heading 'Improving the life of people with mental illness'. It is clearly discussing children with ME, although it will no doubt include a number who do not have the illness. A number of the references refer to Mrs Wessely.

    It is encouraging parents not to regard their children as being physical ill and promotes graded exercise.

    If you read the whole leaflet and scroll to the bottom you will see that they are inviting comments.

    I am sure a number of us can oblige. This cannot be allowed to pass without accurate input.

    In my opinion, it is promoting child abuse............well done the NHS!


    http://www.rcpsych.ac.uk/healthadvi...rentscarers/medicallyunexplainedsymptoms.aspx

    MENTAL HEALTH AND GROWING UP FACTSHEET
    Medically unexplained physical symptoms: information for parents, carers and anyone who works with young people

    [​IMG]
    About this leaflet
    This is one in a series of leaflets entitled Mental Health and Growing Up. This leaflet looks at why some young people suffer from problematic physical symptoms when there seems to be no physical cause. It also offers advice about how to recognise and manage these problems.


    Introduction
    What are the effects of unexplained physical symptoms?
    Medically unexplained physical symptoms (MUPS) are when someone suffers from physical symptoms for which no underlying physical cause can be found.



    About one in 10 children and adolescents suffer from this condition. Common symptoms are headaches, stomach aches, joint pains and tiredness. Less commonly, young people can have significant unexplained physical symptoms, including muscle weakness, collapses, ‘fit-like’ episodes, and severe and chronic pain.



    What are the causes?

    Physical illness or injury may be a factor at the beginning, but when no obvious physical explanation can be found, emotional or psychological factors need to be thought about.



    These problems are more common in children and young people who:

    • are feeling stressed, for instance about moving schools, friendship problems or not managing school work
    • are very sensitive to physical symptoms and pain
    • are very sensitive to others
    • have low self-esteem
    • tend to be fussy or perfectionistic
    • are very anxious and worry more than most
    • worry continuously about the symptoms and their effects on everyday activities – this can cause the symptoms to continue, and even get worse.
    Unexplained physical symptoms may also be part of another psychiatric condition, such as depression or anxiety. There may also be a family history of unexplained physical symptoms









    A planned approach
    Your GP will be able to assess your child and help decide if any specialist investigation or treatment is required. If necessary, they will refer your child to the local paediatrician or child and adolescent mental health service (CAMHS),

    Specialists, such as psychiatrists, can help identify the psychological factors that may be contributing to the symptoms, and can also help to distinguish unexplained physical symptoms from other mental health problems, such as depression.

    Talking treatments can help you and your child to manage unexplained physical symptoms better. Medication can also play a part, particularly in treating any anxiety and depression that they may also be suffering from.
    A planned approach to treat the symptoms is important. The aim of the treatment is to help your child to recover gradually by creating more effective ways of coping with the symptoms, and getting back to a normal daily routine.

    Everyone needs to work together as a team towards the same goals: you, your child, the paediatrician, psychiatrist, general practitioner and school may all need to get involved.

    It can be helpful for everyone involved in helping the child to meet and review their progress from time to time. This allows ideas to be shared about the best ways forward – physical, psychological and educational.

    For the most severe unexplained physical symptoms, specialist help through CAMHS can be helpful in developing a planned approach to the problem.

    Caring for a young person with unexplained physical symptoms can be very stressful. Family life can become dominated by your child’s difficulties. Parents will need to be caring, but also determined and positive even when things seem bleak and uncertain.

    Often parents find it hard to know what to do for the best – when to encourage and when to comfort, when to insist and when to take the pressure off. You may benefit from expert help and advice about this.

    Treatment is best done with active participation from the family. It will involve:
    • finding ways of paying less attention to the symptoms
    • a small, but steady, increase in everyday and social activities
    • the young person will be encouraged to do more for themselves and to regain their confidence and independence
    • asking teachers to help with looking at ways of overcoming any school or education problems.
    Family or individual counselling may be helpful if focused on issues such as how to:
    • respond to pain and other symptoms more effectively
    • increase levels of physical and social activity
    • manage depression, anxiety, lack of confidence and poor motivation
    • deal with family relationship difficulties when these become part of the problem.
     
  2. Valentijn

    Valentijn WE ARE KINA

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    They're really shooting themselves in the foot by trying to claim that 10% of children have a psychosomatic disorder.
     
  3. Firestormm

    Firestormm

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    Actually I disagree with the thought that this is about ME in kids. I know what you mean and have read it through but I would argue that a diagnosis of CFS/ME has it's own criteria: NICE Guideline in the UK. It is recognised and real. Says so in the Guideline.

    Kids are given priority and a diagnosis should occur sooner than with an adult. My experience of treatment for kids with our diagnosis is limited, and I think the Guideline is not explicit in this regard. I seem to recall it saying a referral to paediatrician is required by the GP.

    In Cornwall, I believe the CFS/ME Service will soon be taking over responsibility for kids but this is not something replicated as standard elsewhere. There will always be the possibility of a kid presenting with ME symptoms being treated as that leaflet outlines - true of adults as well. And to be honest I don't think that will change completely until more is known about ME and we have some sort of test or tests.

    But as we have a NICE Guideline, I think in this instance it actually works in our favour because it separates (hopefully) us from others just as someone with cancer would be - although until the cancer was discovered they too might find themselves being Medically Unexplained...
     
  4. Hip

    Hip Senior Member

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    10% does sound like a very high figure, but maybe there is a reason for this:

    Ten years ago, when I caught the nasty respiratory virus that triggered my ME/CFS, I noticed my virus began to spread to many friends and family, and caused what might be termed as "ME/CFS-lite" in pretty much everyone who caught it. Low grade troublesome symptoms of tiredness, recurrent stomach aches, increased forgetfulness, etc now became the norm in my social network, after they all slowly caught the virus.

    The fact my virus slowly but surely spread to all my acquaintances, and then to their acquaintances, led me to believe that my virus would cause an epidemic, but the epidemic would take place slowly, over a decade or so.

    So the fact that the NHS say that 10% of children now have these low grade symptoms which sounds like "ME/CFS-lite" makes me wonder if my nasty virus is the cause, having spread to the rest of the UK of the last 10 years since I caught it.

    Details of the symptoms of this virus are to be found on my website.
     
    Last edited: Jan 24, 2014
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  5. Wildcat

    Wildcat

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    Thanks for posting that Countrygirl. Worrying.
    .

    MUPS and MUS (Medically Unexplained Symptoms) are terms used interchangeably, we have seen it again and again.
    And yes, used as a euphemism for ME, IBS and MCS in Psyche literature over very many years.

    .

    The NICE Guideline is not the saving grace that some believe it to be, partly because there are various other agencies involved in producing material that continues to obfuscate (The Royal College of Psychiatrists, as here, and CAMHS, Child and Adolescent Mental Health Services, for example).

    .

    As late as 2008 it was discovered by an ME patient, that ME/CFS in children had been classified as a mental health disorder by the East Sussex County Council and NHS Joint Services for Commissioning and Planning services in East Sussex (ie NHS Services and Sussex Education and Social Services, CAMHS Services).

    In that document Chronic Fatigue Syndrome in children was listed as a mental health condition, listed between Eating Disorders and Drug Induced Psychosis.
    This document was brought to the attention of the All Party Parliamentary Group on ME (the APPG) in 2008. The evidence was sent to both ME children’s charities (ie Jane Colby at the Tymes Trust, and Mary Jane Willow at AYME), and to the Countess of Mar (Vice Chair of the APPG).
    .
    In fact, it took nearly a year of writing and phoning to the supposedly appropriate authorities, and then required the intervention of a local MP, before the document containing the wrongful mental health classification of ME in children was removed from the Sussex NHS and County Council guidance for Commissioning and Planning Services in East Sussex.

    The Director of Children’s Services in East Sussex wrote that the document, which wrongly included CFS in the list of mental health disorders, had been provided by 'an outside agency'.

    The Director of Childrens Services in East Sussex was asked exactly which *outside agency* had so seriously misinformed East Sussex NHS and East Sussex Education and Social Services, by presuming to override the WHO ICD classification of ME.


    No response.


    .




    .
     
    Last edited: Jan 24, 2014
  6. Marco

    Marco Grrrrrrr!

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    This sounds like particularly ill advised advice to me.

    Young children are not very good at explaining any health related symptoms at the best of times and this encourages parents to ignore or downplay those they do complain of.

    My wife helps out with a charity for children with neuroblastoma - an often fatal illness. Frequently the ONLY hint that something is wrong initially is that kids ask why they're so tired all the time. Early intervention can make all the difference.

    God forbid that their parents were encouraged to put it down to 'medically unexplained'.
     
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  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    medically unexplained because they refuse to test them properly. I wonder how many kids they have missed with other illnesses due to this practice. A full blood count test is misleading but the general population with no medical background would think it will pick up almost everything, far from it??
     
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  8. snowathlete

    snowathlete

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    I think it stinks.

    The problem is that this leaflet is so broad that children with ME CFS, diagnosed or not, could be included by it, and unless the parents know about the NICE guidelines for ME CFS, what the official line of the government is (not their true position) and are able to defend their children with it to avoid the sort of advice in this leaflet, their children could still easily end up subject to it.

    On a wider point, the advice is dangerous to any child with any unexplained disease as they could have something undiagnosed, something rare or something undiscovered which is a physiological disease requiring totally different treatment.
     
    Last edited: Jan 24, 2014
  9. Snowdrop

    Snowdrop Rebel without a biscuit

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    People need to be educated as to what ME really is so that they don't fall prey to 'easy' solutions proffered (disgustingly) by people in authority. We need a high profile advocate.

    Marco's right it doesn't even have to be ME these children have there could be any number of legitimate conditions that require diagnosis.

    When some of these children are harmed who is liable? Mrs W? the NHS? The referring DR? CAMHS?
    I see a class action suit once people realise the harm that has been done. Perhaps when these children are grown up.
     
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  10. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Don't forget to submit comments. I just did.
     
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  11. Hip

    Hip Senior Member

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    Eliminating Virally-Triggered ME/CFS for Good

    I cannot understand why on Earth medical authorities just don't go ahead and develop a coxsackievirus B and echovirus vaccine. Assuming these two viruses are the cause of ME/CFS, which Dr Chia says is very likely, such a vaccine could prevent a whole new generation of children developing ME/CFS, and would likely eradicate all viral ME/CFS once and for all.

    Some vaccines are technically difficult to create. For example, there are a lot of technical challenges to overcome in order to create an Epstein-Barr virus vaccine. But when an EBV vaccine is finally developed, many researchers believe this will eliminate multiple sclerosis for good, as researchers think EBV plays a fundamental role in MS. It will be wonderful when it does arrive, but there are still technical hurdles to overcome before an EBV vaccine becomes available.

    However, for coxsackievirus B, is seems that it would be technically very straightforward to produce a vaccine (see here).

    But I never heard of anyone on this forum talk about such a vaccine, nor any ME/CFS doctors or researchers broach the subject. It seems patently obvious that such a vaccine might well eliminate viral ME/CFS once and for all, yet nobody even talks about this idea.

    Can anyone speculate as to why there is no interest in developing this vaccine?
     
  12. Bob

    Bob

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    We're unable to diagnose your child so their symptoms are imaginary. They should be trained to ignore their imaginary symptoms (with CBT or Lightning Process). Welcome to medicine in the UK in the dark ages 21st century!
     
    Last edited: Jan 24, 2014
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  13. Wildcat

    Wildcat

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    .

    Yes, at times we are, in Britain, in the Dark Ages.
    .

    Jane Colby and the UK Childrens ME Charity The Tymes Trust do a great deal to educate both Medical, Social Services and Educational Professionals in understanding and responding to the real needs of children with ME....... And with great results; there are some very good examples of excellent medical and educational treatment of ME youngsters in Britian.
    .
    Unfortunately there are still some horror stories which are not, it appears, rare.
    .
    I would urge anyone wishing to better understand the situation of ME youngsters in the UK to refer to, or contact, Jane Colby and the Tymes Trust via the Website.



    Some of the worst examples reported by Jane in 2012:
    .


    Tymes Trust Alert 2012-02

    Message from Jane Colby

    29 February 2012


    ======


    Follow Jane on Twitter @JaneCColby

    or read her tweets at www.tymestrust.org


    ======




    'CRUEL COMMENTS SHOULD BE REPORTED'


    ======


    'Over the last week I have shared with my followers on Twitter some of the

    things that have been said to children with ME and their families. I have

    of course anonymised them. Judging by the reaction, and all the

    retweeting that has been going on, people are amazed that these

    statements could have been made by professionals. Unfortunately, such

    occurrences don't seem to be as rare as we'd like to think.





    I have now decided to collect further examples. This is because, when I

    was planning to include an example in a presentation to the All Party

    Parliamentary Group on ME, I was asked by another ME organisation to

    avoid giving the impression that this was a common event.


    Well, having reviewed some of our Advice Line Records, I'm not convinced that it is

    all that uncommon.



    My brief review revealed the following:


    A professional arrived at a mother's home and told that her child with

    ME would be taken into foster care and that she herself would be put in

    prison with murderers and rapists if she didn't send her child to school.



    A doctor told a school that winter typically makes people with ME

    worse, but the reaction from a member of school staff was to say that the

    family should just get a light box.



    The 'sleep police' are ordering children with ME not to take naps if

    they feel they need them. Some of these professionals are well-known in

    the ME field and should surely know better. The late Dr Alan Franklin

    described forcing sick children awake inappropriately as 'cruel' as well

    as unproductive.



    And then we come to the extreme comment that I included in my APPG

    presentation: a child needing a wheelchair was told by a doctor that her

    legs might have to be cut off. This was not only a breathtaking lie but

    it must have terrified the child. I would class this comment, and others

    like them, as a form of abuse.



    Of course, such comments also reveal a serious lack of knowledge about

    ME. For example - as ME expert Dr Elizabeth Dowsett always explained -

    having the option of a wheelchair can not only help a child get out and

    about, but also rest the leg muscles so they have an opportunity to heal.

    I remember a young girl who found the muscles in her arm stopped working.

    All she had been doing was over-using her arm muscles by typing on the

    computer too long. When she rested them, her arm function returned.



    Dr Dowsett often used to point out that the muscles of someone with ME do

    not function like muscles that are fit and well and they need time to

    heal. Information on this is in 'Physios urged to go cautiously', a

    letter of mine that was published in Physiotherapy Frontline. You can

    read it here: http://www.tymestrust.org/pdfs/physiosguide.pdf



    I would advise parents to report professionals who make such remarks as

    those I have listed. Whether they spring from frustration at not being

    able to cure the child, or from annoyance that the child seems to them

    uncooperative, these remarks are inexcusable.



    Do send me any comments which you wish to bring to my attention. It is

    important that we are armed with the facts. We cannot just turn away in

    embarrassment at the behaviour of the professions with whom we are trying

    to work, and pretend that this is not happening.



    Jane



    Jane Colby FRSA

    Former Head Teacher

    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) 2012 The Young ME Sufferers Trust

    .

    .



    .
     
    Last edited: Jan 24, 2014
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  14. Wildcat

    Wildcat

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    Jane Colby's 2008 Tymes Trust Report to the UK All Party Parliamentary Group on ME, refered to in my last post:
    .


    2008:

    Child Protection Issues:

    A Presentation to the All Party Parliamentary Group on ME (2008)
    http://www.tymestrust.org/pdfs/childprotectionissues.pdf

    Jane Colby
    Former Headteacher
    Executive Director, Tymes Trust (The Young ME Sufferers Trust)


    Joanna Smith
    Welfare Rights Advisor, Brunel University
    The Young ME Sufferers Trust
    Registered Charity 1080985
    Founder Patron : Lord Clement-Jones CBE






    Abstract:


    ‘On 2nd July 2008, Jane Colby and Joanna Smith gave presentations by
    invitation of the All Party Parliamentary Group on ME on Child Protection
    Issues, covering Child Protection procedures and recommendations,
    misunderstandings over parental or carer influence, and the personal
    experiences of a parent of a Tymes Trust member…’.

    ..
    .Read on....

    .
     
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  15. taniaaust1

    taniaaust1

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    OMG .. I can hardly comment on that one. That doctor should of been kicked out of the medical profession.. he should have no right to further consult with children. I wonder if he suffered any consquences at all for saying that to a child

    Ive certainly had some completely inapprioprate comments over the years .. eg ME/CFS would get better if you dont watch so much TV (when I dont even really watch TV. I didnt have TV for over a year and couldnt even watch DVDs for a very long time and I cant watch moving things on my dial up connection). I still wonder if I should complain about the nutritionist who put that one in her report (she's a nutritionist working in a clinic with a guy who sees many ME/CFS people.. he's decent thou).
     
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  16. Hip

    Hip Senior Member

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    Anyone know if the above incident occurred recently, or was that back in the bad days when psychiatrists were throwing paralysed ME patients into swimming pools?
     
  17. Wildcat

    Wildcat

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    Jane Colby does not give the date of the incident to which Hip has referred.
    .

    The Tymes Trust is not known for overstating its case.




    There was sufficient concern by the Tymes Trust with the content and number of the communications from concerned parents between 2008 and 2012 for Jane to issue further material in 2012.





    Jane Colby decided to collect further examples of statements which have been made to sick UK children and their parents, due to the number of incidents which were reported to the Tymes Trust Advice Line, which she has stated are not uncommon, after Jane’s presentation to the UK All Party Paliamentary Group on ME (APPG) Meeting of 2008.



    (Excerpt from the full post above)


    Tymes Trust Alert 2012-02


    Message from Jane Colby

    29 February 2012


    Jane.Colby 2012:



    " I have now decided to collect further examples. This is because, when I

    was planning to include an example in a presentation to the All Party

    Parliamentary Group on ME [2008], I was asked by another ME organisation to

    avoid giving the impression that this was a common event.


    Well, having reviewed some of our Advice Line Records, I'm not convinced that it is

    all that uncommon."


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



    The issues of inappropriate and harmful treatment of children with ME in the UK, right up to today, and the work of the Tymes Trust, is not well known in Britain, let alone in other countries.

    ..
    As I said before, the Tymes Trust is not known for overstating its case, neither does it present its material in emotive terms. But the charity continues with its work of educating professionals, advising and supporting children and parents.

    ..
     
    Last edited: Jan 25, 2014
  18. Wildcat

    Wildcat

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    As my posts have given links to the Tymes Trust site and Twitter I do think it would be useful to investigate them for further evidence.
     
  19. Valentijn

    Valentijn WE ARE KINA

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    Me too:
    Hopefully I wasn't too subtle :D
     
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