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Professor Simon Wessely says he is misunderstood

Discussion in 'General ME/CFS News' started by Daisymay, Nov 27, 2012.

  1. Wildcat

    Wildcat Senior Member

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    re the 'SMILE' Trial, Dr Esther Crawley's LIGHTNING Process study on youngsters -


    http://meagenda.wordpress.com/2010/...tatement-issued-by-two-national-me-charities/



    From the ME Association
    http://tinyurl.com/MEA-TYMESTrust-LP-Statement
    Scientific trial involving children and the Lightning Process is unethical, says joint statement issued by two national ME charities
    Wednesday, 04 August 2010 17:15

    A plan to recruit children with ME/Chronic Fatigue Syndrome to a scientific trial comparing the efficacy of an unproven psychologically-based training programme with specialist medical care is “unethical”, say two of Britain’s leading ME/CFS charities – The ME Association and the Young ME Sufferers Trust.
    In a joint statement issued today (4 August 2010), the two charities say:

    We are issuing this joint statement due to widespread public concern, together with our own serious reservations, about a forthcoming study of the psychologically-based Lightning Process on children.

    The pilot study, scheduled to start in September, will look at the feasibility of recruiting children aged eight to 18 with ME/CFS into a randomised controlled trial (RCT) comparing the Lightning Process with specialist medical care.
    It is planned that over 90 children aged between eight and eighteen and their families will be involved in the study.

    The Medical Research Council (MRC) produces specific guidelines for research involving vulnerable patient groups.
    The document ‘MRC Medical Research Involving Children’ is quite clear on this issue. It poses the question: ‘Does the research need to be carried out with children?’ In answer, the MRC states: ‘Research involving children should only be carried out if it cannot feasibly be carried out on adults.’

    The ME Association and The Young ME Sufferers Trust do not believe that it is ethically right to use children in trialling an unproven and controversial process such as the Lightning Process.

    A survey of 4,217 people carried out by the ME Association on the management of ME/CFS found that over a fifth of those who had tried the Lightning Process were made worse (7.9% slightly worse,12.9% much worse). If any trial is to be held, it should first be on adults, who can give informed consent. No rigorous RCTs into the application of the Lightning Process have ever been undertaken.

    Despite many years of scientific research there is still no single diagnostic test for ME/CFS, nor is there a curative treatment. The theory upon which the Lightning Process is based, together with its claim that the prolonged nature of the illness is caused by ‘the adrenaline, nor-adrenaline and cortisol loop’ is not scientifically proven. Moreover, the Advertising Standards Authority recently ruled that an advertisement in an internet sponsored link containing claims of its effectiveness by a Lightning Process practitioner should be removed. We understand that the practitioner will be involved in this study and we find this concerning.

    The Trading Standards departments of two local authorities have also taken action over therapeutic claims by Lightning Process practitioners following referrals by Dr. Charles Shepherd of the ME Association. The Lightning Process calls itself a training programme, not a medical treatment, combining concepts from Neuro-Linguistic Programming, Life Coaching and Osteopathy. It claims to be effective for ME/CFS and psychological problems such as anxiety, stress, depression, guilt, low self esteem. Any evidence for this effectiveness on ME/CFS is purely anecdotal. ME has long been classified by the World Health Organisation as a neurological illness, not a psychological condition.

    We cannot approve of a study involving children as young as eight when no rigorous trials have first been undertaken into the safety, acceptability, long and short-term effects of the application of this controversial and unregulated ‘process’ with adults.

    Furthermore, we have serious concerns about the primary outcome measure, which is school attendance after six months. Children have a legal right to ‘suitable education’ for their particular needs, which may or may not include school attendance.

    The statutory guidance ‘Access to Education for Children and Young People with Medical Needs’ explains that whilst it is desirable for children to be educated in school, other forms of education must be provided for those who need it.

    The Chief Medical Officer’s Working Group Report on CFS/ME (DOH 2002) stated that most children with ME will need education in their homes at some time, potentially for a considerable period. In 2009 the Education White Paper ‘Back on Track : A strategy for modernising alternative provision for young people’ included virtual education. Chapter 7, ‘Learning from the best and supporting innovation’, spoke of ‘e-learning and virtual provision, particularly for pupils who cannot attend school due to health needs.’ Accessible education is also provided for in disability discrimination law.

    If school attendance is the primary outcome measure of this study, families involved may then feel pressurised into avoiding alternative forms of education which would benefit their children and to which they are legally entitled.

    For all these reasons, it is our considered opinion that this study of the Lightning Process in children is unethical and should be abandoned.

    NOTES TO EDITORS
    References:
    ‘£164,000 awarded for new research into the treatment of a chronic childhood condition’.
    Press release issued by The Royal National Hospital for Rheumatic Diseases, which can be found at their press release page:
    http://www.rnhrd.nhs.uk/index_sub_menus/news/news_menu.htm

    Advertising Standards Authority ruling:
    http://www.asa.org.uk/Complaints-and-ASA-action/Adjudications/2010/6/Withinspiration/TF_ADJ_48612.aspx
     
    Jarod likes this.
  2. Enid

    Enid Senior Member

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    And now they still have the gall (psychiatrists and the whole just in your minders) to plead misunderstanding and seek sympathy.

    Terrible reading and the Countess of Mar and APPG doing marvellous work.
     
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  3. maryb

    maryb iherb code TAK122

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    I can't get anything from either of the links, can anyone explain briefly?
     
  4. Wildcat

    Wildcat Senior Member

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    this UNUM Document was taken offline in the last year...

    UNUM Chief Medical Officer’s Report 2007





    ‘Mind over Matter – Exploring the issues of Mental Ill Health.’



    Index to Sections.



    Introduction – Professor Michael O’Donnell
    Mental Ill Health and Employment – Paul Corry
    Top Tips for dealing with Mental Illness – James Wooldridge
    Good Therapy and How to Recognise it – Ruth Harrison
    The Interface Between Psychiatric and Physical Disorders – Dr. Chris Bass
    Why and When do Doctors Collude with Patients? – Professor Simon Wessely


     
    Jarod likes this.
  5. Jarod

    Jarod Senior Member

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    planet earth
    I don't believe "we" have an image problem. I believe a few instances have been blown way out of proportion and the "image problem" is normal human nature.

    Trying to say we have an image problem is the same as calling us militants, and a way to hang a guilt trip around advocates. This image problem non-sense is a way to manipulate people in to submission far as I'm concerned.

    It's called advocacy.

    Somebody told Dr Sheppard a select few patients were paranoid? That is manipulation in the highest order. That the same as saying we have hysteria. Try facing homelessness when you can't work and lost all your friends 15 years ago because of fatigue. That kind of makes one frightened. It's not hysteria or paranoid behavior. It's bad because the clowns in charge have not allowed any tests, or treatments to be developed. Very few doctors will diagnose it, <3% maybe. Where does that leave you when one can't work? Pretty frightened because the thought of being homeless without being able to work is dang scary.

    Reeves more sinned against that sinning?

    Come on now....The guy diverted funds from research and helped turn loose the psychiatric plague on humans.

    Nobody is falling for this non-sense of this being the victim, or giving yourselves awards.



    It is not just CFS either....
     
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  6. Wildcat

    Wildcat Senior Member

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  7. Wildcat

    Wildcat Senior Member

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    Enid - the ME child protection investigation reports are the work of the TYMES Trust (and the BBC Panorama team in 1999)

    The reports were presented to the APPG by Jane Colby - the reports were not the work of the APPG parliamentarians..


    It is surprising that the TYMES Trust reports, and BBC Panorama investigation programme of 1999, are not more widely known about.

    It is worrying to hear the accounts of the ongoing mistreatment of children with ME dismissed as 'emotive' stories.
     
    Jarod likes this.
  8. Valentijn

    Valentijn Activity Level: 3

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    I don't think Wessely has ever been a particularly good representative of the ME psych movement to use as a target. He is generally extremely careful with what he says: the conclusion of what he writes is that ME is psychosomatic, but he'll rarely (never?) write that down in one phrase or sentence, or even one paragraph. He uses so many twists and turns and vague terminologies that he can deny pretty much any interpretation of what he's said, especially if someone's trying to provide short quotations to prove Wessely's stance.

    There are other researchers who are much more plain-spoken. The Nijmegen group, for example, even (eventually) confessed the lack of objective improvement, and has produced a nice guide on how to deal with ME patients' psychosomatic problems. The UK undoubtedly has similar easy targets. The best ones would be those that are leading the research and talking talking to the government and brain-washing the next generation of "fatigue" psychiatrists.

    The only reason Wessely is still a target at all is because he makes himself one by talking to the media. By his own statements he is no longer involved in ME/CFS. I think we should treat him as being as irrelevant as he is, and select a better poster child.
     
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  9. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Er locked up in a mental health unit ? Given the sheer lack of beds ( just 1128 in 2007 - http://www.rcpsych.ac.uk/pdf/A 4.2 OHerlihy et al 2007 camhs beds.pdf ) across child, adolescent and young person forensic care, the chances of any under 18 without a demonstrable health problem getting an inpatient placement with CAHMS is very slim. Are there children in the UK who are being inappropriately treated ? undoubtedly - overstretched facilities, professional anxieties over past failures and the sheer challenge of accurately diagnosing psychological illness in children makes mistakes inevitable and greater flexibility is needed within the system. But the notion that there is some large popuation of M.E/CFS affected young people who are unnecessarily being detained against their will is absurd.

    Veil of secrecy ? So you want children with mental illness to lose their right to privacy ? The Family Court system may not be perfect but it has a significant degree of checks and balances and it's difficult to see it operating as some predominantly repressive entity. Children do get harmed by their parents, and the harm is not always delivered by objective cruelty or physical force; health care professionals have to make difficult judgements and it's absurd to present doctors, nurses, psychologists and social workers as some kind of thought police. Nearly every parent feels anxious when their child encounters health providers - ideas of judgement and failure ( kid has broken arm - parents' fault, kid has virus - parents' fault, kid has asthama - parents' fault) are the natural reaction, it goes with the territory and what we (as parents) have to do is work with the professionals who are charged with ensuring the best health are children can obtain. One has to have pretty good evidence that a child is being hurt by the medics to withdraw that co-operation.

    IVI
     
  10. Wildcat

    Wildcat Senior Member

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    @ In Vitro Infidelium - please read the TYMES Trust reports links that I have posted.... as you appear to be in denial of the facts re the ongoing mistreatment of children with ME.


    Children with ME are still being admitted to the Great Ormond Street hospital closed psychiatric ward that was featured in the 1999 BBC Panorama programme investigation.


    Please note - that due to the secrecy of the Family Courts, it was only when mothers of cot death children were accused of the criminal offense of murdering their babies, and heared in open criminal courts, that the 'pernicious' 'theories without science' of Professor Roy Meadows (MSBP) were exposed to wider analysis and found to be dangerous.

    The mothers in those criminal cases were found to be innocent at the Appeal stage, having spent time in prison for crimes for which they were eventually judged to be innocent -
    the criminal charges against them being one of the biggest medical scandals of our time.


    Of all the (disproportiately large numbers of) families of children with ME being subjected to unneccessary child protection investigations over decades, not one case has been proven or accepted as cases of abuse. ie the children were officially accepted as medically ill. But only after horrendous legal battles.


    .
     
  11. user9876

    user9876 Senior Member

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    I'm talking about children with very severe ME. That is very severe health problems probably bed bound and struggling to eat. I don't think it is a large population but it is those who are the worsed affected who are threatened. One particular paediatrician has a reputation for going down that route.

    The problem is the checks and balances don't work in the family court system. Its failing both children getting harmed and those who are ill. You can have privacy without gagging parents from making any comments. With no transparancy there is no accountability or any need to follow the rules or law. This means that they get away with poor judgement ignoring those who need help whilst concentrating on those who don't.

    In starting proceedings against parents with a child with ME they can easily push the child over the edge causing a relapse by pushing a child beyond there energy levels with assessments and meetings.
     
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  12. Holmsey

    Holmsey Senior Member

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    Hi Adamskitutu, I'm afraid not, I did try reviewing the thread under which I think I was told but it's just too massive and frankly, hard reading for all the wrong reasons.

    While I have the recollection it's certainly possible that I'm confusing the accusation with other accusations for which I was told there was documentary evidence.

    Certainly somewhere in the threads of this site there are posts where I ask for the documentary evidence of claims made against SW that subsequently are not supplied.

    In either case, my last post is offered as a caution and nothing more, I'm neither defending nor attacking any position.
     
  13. Holmsey

    Holmsey Senior Member

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    Hi Firestormm, but if you ever need a new handle, Son of Sam is a beezer, see there's always a silver lining.
     
  14. barbc56

    barbc56 Senior Member

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    Holmsey. Agreed. We don't know the validity of the "facts" stated in many of the above threads. They could be true. They could be false. But that certainly can't be determined based on the type of evidence shown on this thread.

    Barb C.:>)

    BTW, I do agree that the Lightning Process proposal was an abysmal blunder based on what I know of the lighting process and Phil Parker.
     
  15. Holmsey

    Holmsey Senior Member

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    Yes, spot on IMO, it's worth stopping for a second and thinking about what the landscape we advocate within would be like if all we'd ever criticized SW for was his disjointed thinking. I keep posting this but Psychiatry by its nature is subjective, not objective, the higher you go the more cold reason rules and opinion is ignored.

    Look at the deconditioning theory, there's now solid science which says this theory is flawed, actually it just says it's wrong, flawed is to kind. More importantly the whole psyco-social model relies on 'theory' not proof, objective science always develops to test theory, and in the case of deconditioning, the theory is now disproved.

    If this is true, and I'm not doubting you, then that is a far better subject for a thread, a far more pertinent subject of advocacy, and a far better use of the energy clearly available to this community. I'd far rather be writing MP's with every other contributor to this thread to help one child than worrying about what SW is thinking or saying until it actually impacts us in a negative way.

    "All that is necessary for evil to succeed is for good men to do nothing.", Edmund Burke (1729-1797)
     
  16. Holmsey

    Holmsey Senior Member

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    Hi Madie, have you considered doing just that, but not from a place of wanting to win or needing to hurt back, just explain to him calmly and rationally why you believe that he has it wrong, using your own experiences as your evidence base. Attempt to get across the real impact upon your treatment that his influence, his ideas and his papers have had for you, in the real world.
     
  17. Wildcat

    Wildcat Senior Member

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    This thread appears to be full of opinions which deny the abuse of children with ME in Britain, in defiance of the evidence -


    2nd July 2008
    http://www.tymestrust.org/pdfs/childprotectionissues.pdf


    Child Protection Issues:
    A Presentation to the All Party
    Parliamentary Group on ME
    Jane Colby
    Former Headteacher
    Executive Director, Tymes Trust
    Joanna Smith
    Welfare Rights Advisor, Brunel University

    Jane [Colby, Chair of the Tymes Trust ME Children’s Charity] presented the Trust publication ‘ME - The Illness’, which the Official Solicitor had asked her to write for a court case to provide the judge with an overview. She read out the section on parental and carer influence since this was clearly at the heart of the Child Protection issues under discussion.


    ‘…Large-scale misunderstandings about parental
    influence exist amongst physicians, teachers and social
    workers with a poor understanding of classic ME, as
    professionals are not trained in this illness. The Trust’s
    caseload of families seeking help would suggest that
    these misunderstandings are on the increase.


    In 1999, the Trust’s present Executive Director Jane
    Colby (a former Head Teacher) designed a questionnaire
    with the BBC which was sent to families whose
    children had ME. It received a 62% response and
    revealed that 7% of children from families questioned
    had been subject to child protection proceedings (court
    proceedings either threatened or carried out) and 4%
    had been labelled with Munchausen’s Syndrome by
    Proxy. National Statistics at that time showed that MSBP
    affected just one in 100,000 families so clearly this was
    a statistical anomaly. The Trust is not aware of any of
    these cases having, in the end, been shown to be due to
    parental interference with the child’s medical condition,
    recovery or treatment.

    Several years after the BBC survey, the Trust carried out
    its own survey ‘Our Needs Our Lives’ in the county of
    Essex, with a grant from Essex Community Foundation
    Local Network Fund. It revealed that 25% of families
    involved had faced the suggestion that parents were
    causing the illness, and 79% reported that doctors had
    misunderstood their illness as psychological. The Trust is
    not aware of any of these cases eventually having been
    found to be due to parents or to psychological factors.

    These common misunderstandings appear to occur
    mainly because physicians and social workers have
    found it difficult to appreciate that severe and chronic
    disability could be due to a condition as benign sounding
    as Chronic Fatigue Syndrome. They often regard it as
    partly psychological, either in origin, in perpetuating
    factors, or both. CFS is often treated as if it were a
    mental health problem and professionals may propose
    that carers have in some way caused or exacerbated the
    illness or sabotaged recovery out of a personal need to
    keep the patient dependant. The Trust is not aware of any
    such suggestions having eventually been found to be the
    case in its own work.


    The care and treatment of people with ME is greatly
    affected by the split in the medical profession between
    those who have knowledge of classic ME and the
    existence of subgroups of CFS, and those who do not.

    It is therefore a misperception that the divide is between
    the medical establishment and the patient support
    fraternity. When the government Chief Medical Officer
    set up a Working Group to report on what the DoH now
    terms CFS/ME, the Trust’s present Executive Director
    was an invited member of the Group and assisted
    specialist paediatricians to produce its Children’s
    Chapter (Dept of Health 2002).'



    The full publication, ‘ME - The Illness and Common
    Misconceptions: Abuse, Neglect, Mental Incapacity’ is at
    www.tymestrust.org/pdfs/metheillness.pdf
     
  18. barbc56

    barbc56 Senior Member

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    Are we denying that abuse occurs or just pointing out the fact that many statements about the way we are treated, particularly in these type of situations, are hyperbole? While even one case of abuse is not excusable the reality is that these type of experiences are usually the exception and not the rule. It's crucial to factor the impact of such realities as the case load of social workers, money budgeted for a program, the inner workings of a bureaucracy and just plain ignorance about a medical illness as well as other factors which influence the way we are treated.

    While such things as committee reports/press releases, etc. can be effective tools for advocacy, they aren't necessarily free of bias. That's why it's important to use critical thinking skills to discern the credibility of these statements.

    Unfortunately, the more some of these misleading statements are repeated the more they are taken as the truth.

    Barb C.:>)
     
  19. taniaaust1

    taniaaust1 Senior Member

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    The other poster said "quite a few" and didnt say "large population". This has been happening ALL OVER THE WORLD for the past 20 years and still happening today. A current example of ME people being locked away with their ME/CFS ignored is the case of Brian in England, who is currently still detained against his will.
     
  20. alex3619

    alex3619 Senior Member

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