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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. Angela Kennedy

    Angela Kennedy *****

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    This 'review' seems to be merely a statement of deep intransigence, where they reiterate their duty to answer to - no-one, certainly not the public. This is particularly demonstrated by this:

  2. Dolphin

    Dolphin Senior Member

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    Thanks for posting this, ME Agenda.

    And well done to everyone who wrote in.

    At least one useful thing I notice is that LP practitioners can't make claims using the trial.

    I think the people involved might look at their views again if they re-read the piece replacing "anti-retrovirals" for "Lightning Process". I think they might not have made the statements they made e.g. would Esther Crawley and the ethics committee have agreed to a trial of antiretrovirals on children (first) just because some children might take it. Risks for pharmacological and nonpharmacological interventions appear to be assessed differently.
  3. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    From the Joan Kirkbride statement:

    "Dr Crawley had provided a detailed response, which included letters from Mary-Jane Willows, CEO of Association for Young people with ME (AYME) and Colin Barton, Chairmen [sic] of the Sussex and Kent ME/CFS Society which the REC had available for consideration.

    Will the detailed response provided by Dr Crawley for consideration at the REC/NRES meeting on 2 December be published on the University of Bristol website for public scrutiny or is someone going to have to submit an FOI request for it?

    Since AYME is a membership organisation and the CEO and Board of AYME represent the membership, has AYME made the content of this letter of support public?

    Since the Sussex and Kent ME/CFS Society is a membership organisation (and latterly a member of BACME) has a copy of this letter of support for the LP pilot been made available to the Sussex and Kent ME/CFS Society membership and were they consulted over a) It's submission and b) It's content?


    I was alerted to the following, this evening. It is not clear what percentage of the 457 members polled had undergone LP - all 457 or a percentage of 457, that is, was the poll a survey of various treatments, therapies and "training courses" or had all 457 undergone LP?

    Does anyone know the current membership of the Sussex and Kent ME/CFS Society?



    http://www.prnewswire.com/news-releases/revolutionary-treatment-tops-me-cfs-poll-113341994.html

    Revolutionary Treatment Tops ME/ CFS Poll

    LONDON, January 12, 2011 /PRNewswire/ -- A revolutionary self training course has emerged top in a survey conducted by the Sussex and Kent ME/ CFS Society.

    In a poll of 457 members, tracking their experiences over two years, 44 per cent of the society's members found the Lightning Process "very helpful" and 36 per cent "reasonably helpful". Many had their lives transformed by the three-day course.

    In a field where many suffer for years, these figures were well ahead of the NHS's own ME/ CFS service - 28 per cent found the Sussex NHS treatment "very helpful", and just 21 per cent in Kent.

    The Lightning Process is an empowering training course which enables individuals to influence their life and health using techniques based on the way the brain and body interact.

    It has been specifically developed to resolve life's most common and debilitating conditions including CFS, chronic pain, anxiety, depression, addictions, OCD and ME. Celebrities including Esther Rantzen and Austin Healey have turned to the programme for relatives or themselves.

    Clients explore the science behind how beliefs and behaviour patterns can affect lives and health, and discover how to turn these into a complete strategy for success.

    Osteopath and renowned personal development expert Phil Parker designed The Lightning Process at his London clinic. It builds on the concepts of Neuro-Linguistic Programming, Osteopathy, and Life Coaching.

    Last year, 90 practitioners across 13 countries trained more than 2,000 people. The recoveries included some walking for the first time in years; others returning to work after years of illness; and many travelling the world, and achieving their dreams.

    The success of the Lightning Process programme is increasingly recognised by a range of authorities.

    Phil Parker, creator of the Lightning Process said: "The research confirms the remarkable life changes we see day in, and day out - all possible in just three days.

    "We survey our own clients rigorously, and 81 per cent say they have seen real benefits."

    Cathy Fry saw a huge change - she had ME for 20 years, and lost her job when it took over her life 10 years ago. A chronic fatigue clinic diagnosed her "capability level" at just 40 per cent. The clinic recommended the Lightning Process and Cathy has never looked back.

    Now, with a capability level of 100 per cent, she is a breastfeeding counsellor for the National Childcare Trust and an administrator for Yoga for ME in Hove.

    She said: "I couldn't believe how much I improved in such a short period of time - now I work up to 30 hours a week, and find it very rewarding."

    Zoe Chanas, Tel: +44-207-544-0016, email: zoe@murraypr.com


    SOURCE Lightning Process
  4. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    I raised this issue, inter alia, in my own letter of complaint which was submitted on 4 November. On 8 November, I received an acknowledgement from Mrs Kirkbride in which she wrote:

    "Please see below the standard response which NRES is sending to all respondents on this matter. I would advise that we do feel that we now have sufficient information available to us and the no new issues are being raised in correspondence which is being sent to us for consideration. I have copied your email to the Chief Investigator and Sponsor as you have given permission to do so. You raise a number of specific questions outside the remit of NRES where we can not provide a response and the answer to your questions would need to come from either the CI or the sponsor."

    I have received no responses from either Dr Crawley, as CI, or the study Sponsor.

    Several people who submitted complaints to NRES have told me that they also feel that their complaints had been omitted from or inadequately represented within the "collated" complaints compiled by Dr Hugh Davies and raised at the REC meeting.

    I very much doubt the members of the REC had any insight at all into the nature of LP and the way it is carried out.

    Points 13 to 15 of my complaint were:

    13] Data from two large UK patient surveys carried out by the registered charities, Action for M.E./AYME (joint survey published 2008) and the ME Association (published May 2010), show similar levels of worsening of symptoms in CFS and ME patients following the three day "training program", or of no improvement, at all.


    A significant number of first hand personal accounts in the public domain by patients with CFS and ME have reported negative experiences of undergoing the Lightning Process and the way in which it was delivered [2].

    I am very concerned that the REC may not have been adequately informed around:

    a) The nature of Lightning Process techniques and the methods by which it is delivered;

    b) The potential for adverse outcomes in patients with CFS or ME;

    c) The potential for children to feel pressured to get well and to make too early a return to school in order to conform to the beliefs of Lightning Process practitioners and Lightning Process marketing literature, with a potential for loss to the family of the provision of care packages, benefits and education via LEA home tuition service.

    I am concerned that the application of the "process" may impact negatively on the family dynamics if a child were unable to complete the program and withdrew early from the study, or if the child failed to gain benefit from the program, or experienced exacerbation of symptoms during or following the program, or were to experience significant set-back or relapse or if an apparent improvement or resolution of symptoms and disability proved to be short-lived.

    It is not clear to me by what means will it be determined that undergoing the training program would not be detrimental to a child's current health status, as a patient diagnosed with CFS or ME. It is not clear to me what safeguards will be put in place in order to avoid the potential for exacerbation of existing symptoms or the development of new symptoms whilst undertaking the sessions, in-between sessions and when carrying out "homework" and when putting the "process" into practice in the weeks and months following completion of the course. It is not clear to me what support will be given to children and their families if a child were to experience exacerbation of existing symptoms or develop new symptoms as a result of participating in the program or as a result of practicing the instructions in-between sessions or in the weeks and months following completion of the program.

    I share public concern for the potential dangers of instructing a child or young person with ME and CFS to ignore and override sensations of illness and "post exertional malaise".

    With no robust data on safety from the application of the Lightning Process in adults, I am concerned that the research team and the ethics committee considering the application are not in a position to determine that overall the likely benefits of the research outweigh any risks to child participants and that undergoing the training program would not be detrimental to a childs current health status and psychological well-being, as a patient diagnosed with CFS or ME.


    14] I consider there are considerable ethical issues around the wording of the "Training assessment form v2 July 2010"

    http://www.bristol.ac.uk/ccah/resea...ue/smilestudydocuments/lipcassfrmv2july10.pdf


    "Expectations:

    "What I expect from you:

    "That you are ready and committed to do the work required by the course.

    "What you can expect from me, your trainer: I am completely committed to your success. I may ask you to change any behaviours that could prevent you getting the success you deserve. Even though it may not always be what you want to hear, I will give you no-nonsense, honest and essential feedback.



    "1. Have you read the book/listened to the audio book/had the book read to you? (delete as appropriate)
    2. Do you believe you can get better? Yes/No/Maybe
    3. Do you feel you can influence your own health? Yes/No/Maybe
    4. Are you willing to attend and participate? Yes/No/Maybe

    5. Do you feel doubtful, cynical about the LP or just want to give it a go to see what happens? Yes/No/Maybe

    6. Do you feel that you are ready to take the course? Yes/No/Maybe

    "It is important for me to know about your general state of health and health history 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.

    "When you have discovered a way to get well, what would you love to do with your life?

    "I may need to speak to that trainer about your case, please confirm that you give me permission to do this. Yes/No

    "12. Are you analytical (do you spend a lot of time questioning and examining things)? Yes/No/Maybe

    "We know it is valid in some situations to analyse and question, but what we have found during the Lightning Process training, is that those who spend time analysing what they are learning INSTEAD of applying the Process, get in the way of their own progress. You need to have done your research and questioning before the training so that you can get the most from it."

    "I understand that the Lightning Process is a training programme. I understand that the Lightning Process is not a miracle cure and requires commitment and work to be successful. I recognise that the mind and body can powerfully influence each other. I am prepared to look at my illness, health and future in a new way. I am prepared to look at my opinions, thoughts and understanding about my health. I am totally prepared to do the work required."

    "I promise that during the training I will be available for coaching to achieve success, be open to feedback and am prepared to change anything that my trainer identifies could limit my success."


    [In relation to parents or others attending sessions with the child loco parentis:]

    "Being fully supportive of you in understanding and applying the training"

    "Being ready to leave their preconceptions and beliefs behind"



    "The trainer is completely committed to your student's success, as a result:

    " They will ask you to change any behaviours that prevent your student from getting the success that they deserve.

    " They will deliver no-nonsense, honest and essential feedback, to both you and your student - do not mistake this as not caring.

    " They will not always say what you or your student want to hear.

    " If what you, or your student, are doing is going to cost your student their success they will tell you, or your student, even if it risks you being annoyed with them.

    "The Lightning Process is not a miracle cure and requires commitment and work to be successful, however the results can be extraordinary."



    Did the REC discuss the wording of the assessment form in the context of the ethics of asking children and young people to sign up to these beliefs and commitments before potentially participating in a research study and was it was considered that

    a) asking these questions and soliciting these commitments as part of, or as a precursor to a RCT is ethical, and

    b) whether children and young people under the age of 16 can be considered mature enough to understand, be exposed to and respond competently to these concepts?

    I can recall no other research studies involving children and young people where the study participants or potential participants have been exposed to these types of questions. I was shocked that the ethics committee appeared not to have passed any comment on this issue following the meeting to review the application.


    [Extract ends]

    (I'll be posting a copy of my full complaint on my site in the next few days.)

    Suzy
  5. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    On its main website rolling News pages (not its Facebook site), the ME Association has published a copy of the letter issued by Joan Kirkbride on 6 January, here:

    http://www.meassociation.org.uk/?p=3719

    which has a premoderated comment section.

    In response to a query about whether the ME Association is planning to issue a statement in response to the NRES letter of 6 January, Tony Britton has responded:

    "Nothing from us yet. Were considering our position and have a board meeting next week."

    The letter on behalf of NRES is published by the MEA under the post title:

    Ethics committee finally approves controversial SMILE pilot study into Lightning Process and children with ME/CFS by tonybritton on January 6, 2011

    and starts:

    "In a letter received today, the ME Association was informed that the controversial SMILE study which will assess the feasibility of Lightning Process interventions in the treatment of children with ME/CFS has been given final approval by the NHS Regional Ethics Committee...

    which might give the impression to those who have not been following the progress of ethics approval that REC approval had been pending.

    But this is not the case - the study had already received a favourable opinion by South West 2 REC on 8 September and it was reported in the Minutes of the SMILE External Advisory Group meeting held on 2 November that recruitment was already underway at the beginning of November:

    "AOB

    1. SL asked how the study was going to date. EC replied that recruitment was going well, parents and teenagers appeared to be enthusiastic and there was a higher recruitment rate then envisioned."​
  6. Esther12

    Esther12 Senior Member

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    Pardon me Suzy - was this bit from you? It was in red, and I wasn't sure f you were quoting some one.

    By heck, this thread's massive. I've not been keeping up with it, but thanks for all the work you've been doing.
  7. Bob

    Bob

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    Suzy, I'm so grateful to you for raising all of those issues.
    If the ethics committee are unwilling to address these concerns, then they are not protecting the children from potential harm. In which case we need to think about what other course of action we can take, and who else we can raise these issues with.

    I have had a thought that it might be worth contacting the British Psychological Society, to raise these concerns regarding LP practise on children. They have a child developmental department/section. I know that psychologists aren't usually friends of the ME community, but in this case, there is the possibility that they might see LP as a threat to their own industry (seeing as LP is unregulated and carried out by non-qualified, non-psychologist trainees), and it's possible that they might be interested in doing their own research and investigations into the potential harm of LP.

    Has anyone got any thoughts on this before I correspond with them?
  8. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Bob, I don't know whether you are aware but Parker's LP course is

    "Approved by the British Psychological Society Learning Centre for the purposes of Continuing Professional Development (CPD)"


    Have just been reading this:

    http://www.philparker.org/data/uploads/Duing.pdf

    A book out in Spring: http://store.philparker.org/p/test/

    So one is no longer "stressed" or "doing stress" but "ding" stress.

    Not helpful for those with keyboards without a circumflex and who cannot remember the ASCII code.

    He also speaks at "Do" events where motivational peddlers peddle "Do" and he peddles "ding".

    http://www.dolectures.com/

    http://www.dolectures.com/speakers/speakers-2010/phil-parker

    Suzy
  9. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Yes, it was part of my complaint and I had highlighted it in red in the complaint, itself.

    Yes, it's a long thread. But with three other LP threads as well, I'm not sure about suggesting we start a Part Two thread with links back to this one and the three others in the first post.

    What do others think?

    Suzy
  10. Enid

    Enid Senior Member

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    How about a return to common sense - a child - I have them round me will in innocence wish to please sans all measures. Any such attempt to fill research categories is meaningless.
  11. Esther12

    Esther12 Senior Member

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    I've never really gone past those questions when reading about LP. They sound like an admission of quackery, regardless of whatever else is involved.

    ps: I'd keep it all in this massive thread. Not many will go through it all, but it's sensible to have it in one place. Ta.
  12. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Just noticed I've hit my 1000th post on PR. Do I get a balloon or something?


    "Well, I met him on a Monday and my heart stood still.
    D do ron ron ron, d do ron ron.

    Somebody told me that his name was Phil.
    D do ron ron ron, d do ron ron.

    Yeah, my heart stood still.
    Yeah, his name was Phil.
    And when he walked me home,
    D do ron ron ron, d do ron ron..."

    (With apologies to Phil Spector)


    Suzy
  13. Bob

    Bob

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    Oh, no, I didn't know that... Thanks for pointing that out Suzy.
    So Parker's even managed to get the British Psychological Society on board.
    I'm not sure what it means when they say "for the purposes of Continuing Professional Development".
    Still, it might be worth bring it to the attention of the Child Development section of the British Psychological Society, although it's not very promising, by the look of things.
  14. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Absolutely. The questions have been modified somewhat for the LP pilot study from the standard LP application form that many LP coaches are using.

    The SMILE Lightning process assessment form July 2010 is here:

    http://www.bristol.ac.uk/ccah/resea...ue/smilestudydocuments/lipcassfrmv2july10.pdf

    As a parent/carer, I really cannot understand how parents are prepared to let their children and young people sign up to these agreements or sign on their behalf. The standard application form is even worse. There's an example here:

    Sample Lightning Process application form:
    http://www.changeworksforyou.com/applicationform.htm


    I think I'd rather see it kept all together. If we were to start a new thread, stuff already posted in this thread is more likely, I think, to be duplicated in a new thread and if this thread is abandoned for a new one it will sink out of the first few "New posts" pages.
  15. Mark

    Mark Acting CEO

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    Hell yes! Have a bunch!

    :balloons::balloons::balloons:

    Your work on Phoenix Rising, and beyond that, your tireless and principled campaigning on ME over many years, is an immense contribution Suzy - we're so lucky to have you around.

    :thumbsup: :Sign Good Job:
  16. Bob

    Bob

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    :balloons: :balloons: :balloons: :balloons:
    Congrats on your 1000th post Suzy!
    Of course you get some balloons!

    :balloons: :balloons: :balloons: :balloons:

    Many many thanks for all the hard work that you continue to do on behalf of so many of us.
    :thumbsup::thumbsup::thumbsup::thumbsup:
  17. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    http://www.bps.org.uk/bps-learning-centre/bps-learning-centre_home.cfm

    CPD Approval Process
    http://www.bps.org.uk/bps-learning-centre/approvals-process/approvals-process_home.cfm
  18. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Enough balloons, already, and gosh, thank you both for your very kind words.

    While you're here, Mark, though this is an admin rather than a mod enquiry:

    I know it's possible to do an export file in various formats for PM messages, but do you know if is it possible to export a copy of all one's posts?

    Suzy
  19. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    The Phil Parker Training Institute is listed on this page of the BPS approved external CPD providers:

    http://www.bps.org.uk/bps-learning-.../approved-external-cpd-opportunities_home.cfm

    and a PDF brochure here:

    http://www.bps.org.uk/document-download-area/document-download$.cfm?file_uuid=30C98D8C-9D04-BA01-C94F-EE0D99E7ECAD&ext=pdf

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

    It might not be a bad idea if the words SMILE pilot study could be added to the thread title for better identification (as long as thread title edits do not change the URL path). It was not known until the pilot study documents were released that the study had been given the acronym "SMILE".
  20. Bob

    Bob

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