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Lightning Process to be Evaluated in Research Study on Children

Discussion in 'General ME/CFS News' started by Jenny, Mar 4, 2010.

  1. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Bob,

    Fingers is your man.

    There are these two other LP threads where people have posted useful accounts:

    http://www.forums.aboutmecfs.org/showthread.php?3628-Article-Lightning-Strikes-a-CFS-Patient/

    http://www.forums.aboutmecfs.org/sh...iving-the-lightning-process-a-go-on-this-week

    I have also posted the Action for M.E. article from 2007 in one of these threads or if you email me I can send you the PDF and a PDF of the application form. The AfME article has quite a lot of useful published comment in it.

    There is also John Sayer's site:

    http://www.sayer.abel.co.uk/LP.html

    LP DOESN'T WORK FOR ME

    and this site: http://hubpages.com/hub/The-Lightning-Process-Didnt-Work-For-me

    See this published account, too:

    http://www.thisisnorthdevon.co.uk/n...idn-t-work/article-613394-detail/article.html

    Lightning process for ME didn't work for me
    Thursday, January 15, 2009, 07:00
  2. Bob

    Bob

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    Hi Julia,
    I was interested to read your story... and to read about your son also.
    I'm glad to hear that he pulled through his lowest point.

    It's a very complicated world, the ME world, isn't it... as demonstrated by your message... it's complicated and confusing... and the medical profession don't seem to help us with this.
    Maybe, as you say, most of them just don't understand ME, or refuse to understand it, and they just view it as a purely fatiguing illness.

    I'd never heard of EEG neurofeedback therapy... From what you've written, I guess it's to do with tuning down the brainwaves, hence the dampening of emotions.

    I think that the Lightning Process is also about tuning out normal emotions and sensations, and about ignoring the normal illness response.
    I'm convinced that this would be psychologically damaging, and developmentally damaging, to children who can not have the maturity to fully understand their bodies and emotions, and will not be in a position to say that they are finding the process damaging or unhelpful.
    The children will be taught to over-ride their natural response to pain and illness, and, from what I understand will be taught to lie to themselves about their bodily sensations and emotions.
    It seems to me to be the opposite of psychotherapy, where insight and understanding of the self are nurtured, and it's not even on a par with CBT, which is supposed to use evidence to challenge long-held beliefs about the self. It is simply about believing that you are well, even though all the evidence suggests otherwise. It's a belief or faith system.

    I agree with you that the lightning process might be helpful to a subset of ME/CFS patients (i.e. CFS patients and not ME patients), and personally, I think that the priority for the ME community must to be to separate ME from other fatiguing illnesses (i.e. to make ME a distinct illness in it's own right)... I can't see how we can make progress otherwise.

    Great to read your message Julia,
    Best Wishes,
    Bob


  3. Bob

    Bob

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    Thanks for that messsage Suzy, I'll look through all your links.
  4. Bob

    Bob

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    Does anyone know if there is any other field of medicine in which NLP or 'positive thinking' are used as a medical treatment?

    NLP isn't even used by psychiatrists, is it?

    As far as I understand it, NLP is just a personal development tool used by people who want to be 'successful' in business?
  5. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Julia wrote:

    The issue is considerably more complex.

    Not only is the concern that children might be persuaded into self delusion or overestimation of how much physical and mental actvity they can safely cope with following the "training" but there are ethical issues here.

    I would like you, Julia, if you would, to read through the application form.

    http://www.changeworksforyou.com/applicationform.htm

    Do you think it is reasonable that adults should be expected to sign up to these statements and beliefs before being accepted into a "seminar".

    Why do you feel the LP process requires these questions to be answered?

    Are these types of question asked of people about to embark on, for example, a course of CBT?

    Do you feel children and young people have the emotional maturity to respond to those types of question?

    Would you feel comfortable asking a child or young person to sign up to these?

    If children and young people are not going to be expected to sign up to these, by what means are these children going to be evaluated for "readiness" for the "training" according to the LP program deliverers? And how is "readiness" being defined?

    If they are not going to be "assessed" for "readiness" why do adults need to be "assessed" for "readiness"?


    Some would consider that what is being presented as an "assessment for readiness" is, in reality, a precurser to a form of brainwashing, similar to that used in cults, to prepare the potential "trainee" for being receptive to suggestion and to responding positively when they actually attend the "training" sessions.

    That creeps me out to put it bluntly.

    Now if adults want to submit to that type of program that is their choice.

    But children?

    As young as eight?

    From the MRC's Ethical Research Guidelines for research involving children:

    "1.3 Summary of key ethical principles relating to research involving
    children

    Children require special protection because they are less likely than adults to be
    able to express their needs or defend their interests – they may not have the
    capacity to give consent.

    The following principles should guide all MRC-funded research involving children: 4, 5

    . Research should only include children where the relevant knowledge cannot by
    obtained by research in adults (for guidance, see 4.1)"


    Why has this study been approved when no research has yet been done on adults, to the best on my knowledge, other than the Findlay pilot?

    Here is something else that causes me concern. The application form includes this:

    "It is important for me to know about your general state of health both physically and mentally. To help me assess your suitability for the seminar please tell me if you have any medical or mental health issues that you have not yet mentioned on this form? If so, please list them. It is vital that I am aware of any pre-existing conditions and past or present diagnoses."

    Leaving aside for one moment the issue of research into children, many of those deliverying LP sessions are former "trainees". Many will have had no prior background in medical settings or therapies (either regulated or unregulated).

    Do you feel that LP "coaches" are qualified to "assess" whether pre-existing conditions and past or present diagnoses might indicate non suitability for the "training" in any given individual?

    Does Parker publish a list of "pre-existing conditions and past or present diagnoses" which would preclude acceptance into the "training"?

    We have seen an account on one of these three LP threads where an individual had reported being coerced into responding positively at the end of the "training".

    We have one report of a "coach" allegedly claiming LP could cure cancer.

    How did you feel about these accounts? What do these accounts say about the professionalism of those delivering the "training", the procedure for training "coaches" and the regulation by Parker of those undertaking training to become "coaches".
  6. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    "15. Certificate of attendance
    On completion of the course you will receive an attendance certificate from your trainer. We foresee that, over time, taking a Phil Parker Lightning Process training seminar will be recognised as a valuable component of an individual's life and work skills. The certificate will act as a reference that you attended the seminar for personal development"
  7. Dr. Yes

    Dr. Yes Shame on You

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    From Suzy:

    Absolutely. But even beyond that... before the NHS considers conducting ANY studies on LP it should conduct follow-up studies to investigate the existing research findings of abnormal physiological response to exercise, neurological dysfunction, etc in ME/CFS that would contraindicate a program like LP (or GET, for that matter) in these patients.

    To do any less would be potentially criminal neglect on the part of the NHS.. but they're neck deep in those waters already, so another inch wouldn't matter...
  8. Mithriel

    Mithriel Senior Member

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    In ME exertion beyond what the body is capable of doing safely can cause irreversible damage. In LP the child will be encouraged to ignore any signs of pain and exhaustion, signs evolved over millenia to indicate something is wrong within the body.

    Many people with ME, myself included, have exercised straight into a wheelchair. How dare they take that risk with a child of eight.

    Vance Spence and MEResearchUK showed that exercise causes the body to produce powerful oxidants called isoprostanes. (This work has been independently confirmed.) These contribute to a hardening of the blood vessels which then compromises blood flow. Many other pieces of research have shown biological reasons for damage caused by over exertion.

    Just because a powerful group of researchers choose to ignore all this work doesn't mean we should stay quiet and let it happen.

    It is one thing being open minded but all things are not equal; some things carry a huge risk. If you are tired all the time or have some other fatiguing illness LP may help or at least do no harm, but if you have ME you are in serious danger.

    Mithriel
  9. Bob

    Bob

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    I agree with you Mithriel...

    The Lightning Process completely ignores 'post exertional malaise' as a symptom, and so common sense says that it is not a sensible approach to treatment for ME... It clearly shouldn't be used for anyone who has 'post exertional malaise' as a symptom.

    I can't see how any ME organisation which advocates 'pacing' for ME, can accept the Lightning Process as a treatment approach...
    Pacing and LP are polar opposites...
    Pacing encourages us to tune into our body and our symptoms and to adjust our activity levels accordingly,
    but LP trains patients to completely ignore their symptoms and their bodies, and to over-ride their natural response to illness and fatigue.


  10. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Our UK patient orgs should be kicking up one almighty stink about this.

    BUT Crawley is Medical Adviser to AYME...and Crawley was NICE GDG...and Crawley sits on the MRC CFS/ME Expert Panel...and Crawley is clinical CFS lead for Bath...and this woolly dolly who's only got 11 strands of hair anyway feels like tearing all of them out that this pilot ever got approval.

    There's a prospectus for the Parker Training Institute here:

    http://www.lightningprocess.com/LinkClick.aspx?fileticket=u09jAxiXito=&tabid=361&language=en-US
  11. flex

    flex *****

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    It seems that the child catcher, Esther Crawley, has been giving talks in the Bath area saying that the WPI doesn't exist and its a fraud.

    here is a short excert more on the link:
    I went to see a British doctor who is actively involved in areas of CFS research in the UK talk about "The Future of CFS/ME Research".

    She spent 15 MINUTES on the subject of the WPI in which she said:

    1. XMRV figures were exaggerated. To demonstrate this she showed original report with 67% XMRV positive statistic. Then she showed the statement where 95% was quoted and said WPI had made it up. (I did correct this later on, explaining that more samples had been tested).

    2. The WPI "doesn't exist" in that the picture of the building is fake. The WPI are asking people to donate money for something that doesn't exist. (I felt it was also implied that the WPI were being deceptive around this issue.)

    3. That the WPI had a vested interest in publicising their study in a big way because they then went on to charge over $600 for tests for XMRV. (no mention of Wessely and his famous XMRV test!).............



    http://www.facebook.com/topic.php?uid=154801179671&topic=12698


    OH AH CHITTY CHITTY BANG BANG WE LOVE YOU..........
  12. Bob

    Bob

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    :( ***sigh***

    It's just depressing...

    Why can't we hear something new, refreshing and enlightened from the medical profession instead of the same old ignorant attitudes?

    But at least now I've got a better idea about what sort of person is carrying out The Lightning Process research study on children.



  13. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Phil Parker LP Presentation on XMRV and CFS

    No need for antivirals when Phil has the answer...

    http://www.lightningprocess.com/LinkClick.aspx?fileticket=Uz7/MsTEqpU=&tabid=371&language=en-US

    Lighting Process Presentation:

    XMRV and CFS Slide 7


    How this relates to the Lightning Process

    "If we assume that on average:

    67% of the cases of CFS clients that are seen with the LP have the XMRV virus,

    And according to our findings 85% of these people recover their health in the 3 days of the LP programme

    The LP must be assisting these people to deal effectively with that infection in some way (we would hypothesise it is a resumption of good immune and neurological function)"

    ------------------

    Mmmm, right Phil....

    If you can manage one, however, brief, please add a comment to Dr John Greensmith's published letter on the Bath site re the Crawley pilot LP and children study, over here:

    http://www.thisisbath.co.uk/letters...-sufferer/article-1943502-detail/article.html

    There are currently 19 comments, can we make it 25 by the end of today?
  14. Bob

    Bob

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    In no other field of medicine would 'positive thinking' be proposed as a first line of treatment or as a cure for a disease.

    What are these medical professionals thinking? Where is their sense of responsibility towards the children in their care?
    Once you understand the LP, it just screams out that this is not an appropriate technique to be using on people with ME (the neurological type of ME with 'post exertional malaise' as a symptom) and especially not for vulnerable children who won't have a full understanding of the processes involved, and who might find it hard to refuse the treatment or to drop out when they feel their symptoms increase, especially when they are told to ignore their symptoms by the trainers.

    I mean, why is it left up to the ME community to challenge the medical professionals, so that they don't put these children at risk?
    What are these medical professionals paid for?
    Where are the people who should be protecting these children?

    The more I think about this research study on children, the more bewildered I'm becoming about it!

    (I've just started re-editing my letter... I might upload it to ask for opinions and tips, once I've edited it.)
  15. Bob

    Bob

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    Hi Suzy, I posted the following line on the Bath Chronicle website...
    I could have said a lot more, but I thought I'd keep it short:

    I know exactly what you mean Suzy... it's just crazy isn't it!

    So we do we stand much of a chance?
    This seems to be a bit like opposing Wessely...
    Crawley seems to have so much influence... and now she's come out against the WPI which is just so depressing, and seems to confirm that she is of the same mind-set as Wessely, and with a similar degree of influence over the establishment.
    Crawley is a fairly new name to me though... I hadn't come across her much before now.
  16. shrewsbury

    shrewsbury member

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    pro LP letter from South Moulton ME Support Group

    South Molton ME Support Group posted this to CO-CURE today

    [if: I found this quite heart-breaking]

    Bath Chronicle Lightning Process

    Thank you to John Greensmith for continuing to alert us to the possibility to comment on the article at
    http://www.thisisbath.co.uk/letters...cle-1943502-detail/article.html#StartComments

    He commented in particular on there being so few responses and an absence of ME organisations, which encouraged me to post the following comment reflecting the views of ME support groups in North Devon. I used to post much more on Co-Cure and other groups, joined rallies, etc, etc; these days my time is better spent helping people get well, but I have made an exception here. Best wishes to all, from Jacqui Footman.

    I am delighted that there is to be rigorous NHS-based research of this interesting technique and also that through Dr Crawley's outreach work with North Devon Hospital local children here may also benefit. We have two ME Support groups here in North Devon, ME North Devon and South Molton ME Support Group. We know of around 30 people who have tried LP and all but 1 or 2 significantly improved, including one who had been bed-bound for 10 years such that the local LP practitioner came to work with her at her bedside. On the third day of her course she walked up her long driveway with the practitioner. That was almost a year ago and she is going from strength to strength since. My own daughter got back to school and the horse-riding and going out with friends that she loves; she had had glandular-fever-induced ME, been off school for over a year and the ME-diagnosis had been confirmed by two national experts in the field. She was never depressed - although she was beginning to become miserable with the difficulty of the attempt to follow Dr Crawley's NHS strict energy management protocol, which was what drove us to try something different (the LP). That was a year ago. ALL the Devon children with ME of whom I am aware who have done the LP course have recovered and got back to normal life and school. Paediatricians locally have been very supportive of these children whatever the stage of their illness and have trained in ME/CFS guided by Dr Crawley.

    It strikes me that LP works quicker and more fully in children than in adults, but that is just my subjective impression - it is great that there will be a rigorous and large trial of LP in young people to ascertain such observations. Childhood is the worst time of your life to get ME and children miss out on so much; the sooner they can get back to living a normal life the better, whatever works - be eclectic. There is enough research out there to show that just because a mind-body approach triggers healing does not necessarily mean there was nothing physically wrong in the first place.

    There are several members of our group who would like to do the LP course but cannot afford to so it would be great if an evidence base can be created so that LP can be available for free on the NHS. ME North Devon group has been fundraising to help some members afford the course but this is just scratching the surface. High quality research may also begin to address the question of why LP sometimes doesn't work, or doesn't work as quickly or fully for some people. We have an excellent LP practitioner locally who continues to support people with their use of LP for as long as it takes after the initial 3-day course is finished. They have the opportunity to takes things as steadily as they want/need based on the practitioner's own real experience of the illness and common sense human understanding of their needs.

    Congratulations to Dr Crawley for considering the possibility of researching this approach and doing all the hard work to organise funding and set up the trial. Ethics approval for such work is rigorous and all NHS treatments are subject to informed consent so I cannot see how children could be at risk from this work; however there is a great deal to gain. Superb that there is an opportunity properly to test LP and that children with ME (who have in the past been a much neglected group) will be the first to benefit.
  17. Dolphin

    Dolphin Senior Member

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    This person may be a bit biased. She is a mind-body practitioner herself.
  18. Mithriel

    Mithriel Senior Member

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    Herpes viruses like EBV stay in the body but can be contained, like chickenpox is dormant until it wakens up and you get shingles.

    It is amazing how many of the miracle cures are from people who had glandular fever, especially the "I was bedridden and now I can climb mountains" sort.

    Whether the long term EBV is the same as Coxsackie B induced ME is a question that was being debated just as CSF came on the scene and it was dropped with so much else.

    People with enteroviral ME are more likely to be less ill, maybe still able to work with difficulty but more likely to be chronically affected and more likely deteriorate with exercise.

    It might be that having XMRV makes EBV and enteroviral ME chronic but there is a long term glandular fever which is different.

    Mithriel
  19. Min

    Min Senior Member

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    My local ME group pushes LP too - some groups are run by people with very mild chronic fatigue who have no idea what it's like to have neurological ME for years.
  20. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Jacqui Footman is Information and Publicity Officer for the South Molton ME Support Group.


    Advert from the MEA's most recent mag:

    Jacqui Footman BA (Hon), PGCE, Member National Council of Psychotherapists,
    Practitioner of Emotional Freedom Techniques (EFT), NLP, EMDR, WHEE,
    EmoTrance and Reiki. Registered (General Regulatory Council for
    Complimentary Therapies). Trained by Dr Myhill to support her ME/CFS
    treatment programme. Info Officer, South Molton ME Support Group with
    extensive experience of ME/CFS at many levels.

    Jacqui's EFT practice combines aspects of counselling, life-coaching, NLP
    and psychotherapies such as CBT and solution-focussed therapy with the
    powerful new energy-psychology technique EFT, which involves tapping
    acupuncture points to bring about dramatic personal change and healing.
    EFT is available by phone.

    -----------

    NB: EMDR = Eye Movement Desensitisation Therapy

    WHEE = Wholistic Hybrid of EMDR and EFT

    Although Ms Footman declated her interest in the South Molton Group Committee, she had not disclosed in her initial comment her CIO as a practitioner of various therapies. In my opinion, she should have declared the interest.

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