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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 Owner of Dx Revision Watch

    Esther, the SMILE Patient Information materials were requested by me to be released through FOIs in 2010.

    These were initially refused. I appealed the refusal, which was unsuccessful.

    Subsequently, the Patient and Parent Information materials were released on a Bristol University webpage in September 2010.

    There are links for these documents (and copies of the PDFs) on my ME agenda site:

  2. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

    New Chalder el paper on LP

    Br J Health Psychol. 2012 Sep 19. doi: 10.1111/j.2044-8287.2012.02093.x. [Epub ahead of print]

    Experiences of young people who have undergone the Lightning Process to treat chronic fatigue syndrome/myalgic encephalomyelitis - a qualitative study.

    Reme SE, Archer N, Chalder T.


    Harvard School of Public Health, Harvard University, Boston, Massachusetts, USA.



    Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a serious condition characterized by debilitating but unexplained fatigue. Treatment alternatives are few, and especially so for young people. The aetiology of CFS/ME is still unclear and controversial, but rehabilitative interventions seem so far most promising. The Lightning Process is a 3-day training programme that has recently become available, but no outcome studies have yet been published. It is a non-medical training programme that combines concepts from Neuro-Linguistic Programming, Life Coaching and Osteopathy. The aim of this study was to explore the experiences of young people with CFS/ME after they had undergone the Lightning Process.


    Qualitative research study.


    Semi-structured interviews were conducted with an opportunistic sample recruited through open advertisements of nine young people, aged 14-26, who had undergone the treatment, and three of their parents. Inductive thematic analysis was used to evaluate the content of the interviews.


    Mostly positive experiences were reported of the Lightning Process. Two reported dissatisfaction and no improvement, while seven were satisfied and were much improved. Particular helpful aspects were the theoretical rationale, practical exercises, and the technique they learned. Less helpful aspects were the intensity and short duration of the treatment with little follow-up, the secrecy surrounding it, and feelings of being blamed if the treatment did not work.


    As this is the first report of young people's experiences with the Lightning Process, it will be important to consider the helpful and unhelpful treatment components for future refinement of interventions for CFS/ME.

    STATEMENT OF CONTRIBUTION: What is already known on this subject? Treatment alternatives for people with CFS/ME are few, especially for young people. The Lightning Process is a popular treatment programme that has recently become available, but no studies involving the treatment have yet been published. Feelings of blame or dismissal in CFS/ME patients lead to withdrawal or disengagement from professionals. What does this study add? The Lightning Process for young people with CFS/ME encompasses many positive aspects, particularly the practical aspects of the treatment programme. The more extreme position taken by the Lightning Process in denying the limitations of the illness seem to produce divergent results in various young people; some found it liberating and therapeutic, whilst others did not respond well to it and were left feeling guilty and blamed.

    © 2012 The British Psychological Society.
    [PubMed - as supplied by publisher]
  3. Bob


    England (south coast)
    Dx Revision Watch

    Hi Suzy, do you know if this is the SMILE paper, or just a preliminary paper?

    It's not quite as bad as I was expecting, as it has a little balance:

    "The more extreme position taken by the Lightning Process in denying the limitations of the illness seem to produce divergent results in various young people; some found it liberating and therapeutic, whilst others did not respond well to it and were left feeling guilty and blamed."
  4. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    I have heard a rumour (one source so far) that the Norwegian govt. is backing lightning research to the tune of one and a half million US dollars, while the Rituximab trials are still, I think, unfunded. I will try to confirm this.
  5. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch


    No, this is not the SMILE Trial, which is a three year pilot study and was anticipated to recruit far more young people through the Bath/Bristol CFS/ME Service than the 9 young people studied in this Chalder et al paper.

    The SMILE Trial aims are:

    "Assessing the feasibility and acceptability of comparing the Lightning Process with specialist medical care for Chronic Fatigue Syndrome or Myalgic Encephalopathy (CFS/ME) pilot Randomized Controlled Trial."

    in children 12 to 18 (originally 8 to 12).

    The PI for the SMILE Trial is Dr Esther Crawley, University of Bristol.

    Recruitment: Assessment in clinic September 2010 – December 2011;
    Consent to randomization September/October 2010 – January 2012;
    Interventions November 2010 February 2012;
    Qualitative interviews October 2010 – October 2011;
    Follow up December 2010 to May 2012; feasibility analysis January 2012 – May 2012;
    Health Economic Analysis February 2012 to July 2012

    Principle Investigator: Esther Crawley.
    Co-applicants: Alan Montgomery, Nicola Mills, Will Hollingworth, Zuzana Deans, Jonathan Sterne, Alastair Gibson, Fiona Finch, Phil Parker and Jenny Donovan

    The SMILE Research Protocol:

    The Research Ethics Application Form:

    all other Patient Information materials and associated study documentation are at the link on my site in the previous post.

    Aims and objectives:

    The overall aim of this study is to investigate the feasibility and acceptability of conducting a Randomised Controlled Trial (RCT) to investigate the effectiveness and cost-effectiveness of specialist medical care with specialist medical care plus the Lightning Process in treating CFS/ME in children. The specific objectives aim to inform the design of a full-scale, adequately powered randomised trial.
  6. Esther12

    Esther12 Senior Member

    Thanks Suzy.

    This in the information that teenagers were tgiven about the LP, in order for them to be able to provide informed consent:

    Then they would be given this book by Phil Parker to read:

    In the trials protocol they state:

    Even just providing that info would have let the children be slightly more informed about what they were getting involved with.

    Would it be seen as acceptable to treat children diagnosed with a condition other than CFS like this?

    edit: This was bugging me. The information they provided is not enough to allow informed consent -at the very least they should have included the info that was in their protocol, and explained what osteopathy, life coaching and NLP are. Crawley is such an odious creature.

    What a surprise that no attention seems to be paid by Chalder to whether the LP is quackery or not... just how those who chose to pay for it feel about it afterwards.
    Bob likes this.
  7. Bob


    England (south coast)
  8. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

    Esther wrote:

    Although this was a "retrospective" study, that is, young people and young adults who had already undertaken LP were recruited to discuss their experiences (as opposed to the Bristol/Bath SMILE Trial, where 12-18 year olds have been recruited for assigning to one arm of the trial who had not previously undertaken LP and were therefore being exposed to LP at no financial cost to themselves, and where they might not have been exposed had they been obliged to pay for the LP or may not have considered undertaking the LP had they not seen the recruitment literature or may not have considered undertaking LP outside of a trial setting), I remain very concerned that the involvement of academic and medical institutions like Bristol/Bath and the Chalder et al study and the decision of, for example, BARTS, to give a platform to Parker for making presentations on LP lends LP a legitimacy it does not warrant and particularly when no controlled studies on the safety and efficacy of LP have been undertaken in adults.

    From the SMILE Trial Protocol document:
    "Specialist Medical Treatment plus the Lightning Process: In addition to the specialist Medical Care detailed above, young people and their parents will be asked to read the information about the Lightning Process on the website or using information sheets. If the young person is well enough, they will be asked to read a book about the Lightning Process. If they are unable to read the book, they will be asked to listen to an audio book. Children/young people and their parents will be asked to complete an assessment form (which will take about 10 minutes) where they are asked to identify their goals and describe what they learnt from reading the book. After this they will have a telephone call with a Lightning Process practitioner (LPP) (usually approximately 20 minutes). This is used to check that the young person and their parents are happy about attending the course, checks the goals identified by the young person and is an opportunity for the young person and their parents to ask further questions. If the young person and their family are happy to continue, the young person will be given a date to attend a course. "

    "The course is 3 sessions on 3 consecutive days. Each session is 3 hours 45 minutes long. Group sessions include 4 to 5 young people between 12 – 18 years of age who live within the region covered by the CFS/ME service. During the group, children and young people will have a theory session and a practical session."

    "The theory session will include taught elements on the stress response, how the mind-body interacts and how thought processes can be helpful and negative. The language used by young people will be discussed and in some cases challenged. Young people will be encouraged to think about what they may be able to take responsibility for and change. The taught sessions are followed by a group discussion.

    The practical session is used to put some of the skills learnt into practise. Young people identify a goal they wish to achieve (such as standing for longer) and are then given alternative ways to think about and prepare for this. This involves using different cognitive (thinking) strategies before and during the goal is attempted. Young people are also asked to identify a goal in which they can practise the strategies in the afternoon or evening. This goal will usually be short but could be an activity that is up to 30 minutes long.

    The LPP will then arrange two follow up phone calls with the young person and parents within 2 weeks of the course and then approximately 6 to 8 weeks later."

    The following documents are available from the Bristol Uni site or my site:

    1] SMILE Information sheet for teenagers August 2010 [pdf (150kb)]

    2] SMILE Information sheet for parents September 2010 [pdf (147kb)]

    3] SMILE Protocol Final July 2010 [pdf (170kb)]

    4] SMILE Under 16 assent to contact July 2010 [pdf (109kb)

    5] SMILE 16 to 18 consent to contact July 2010 [pdf (110kb)]

    6] SMILE Parental consent to contact 10 May 2010 [pdf (111kb)]

    7] SMILE Under 16 assent to study July 2010 [pdf (112kb)]

    8] SMILE 16 to 18 consent to study July 2010 [pdf (110kb)]

    9] SMILE Parental consent to study 10 May 2010 [pdf (113kb)]

    10] SMILE teenager consent/assent to teenager interview August 2010 [pdf (110kb)]

    11] SMILE Parental consent to child interview 10 May 2010 [pdf (111kb)]

    12] SMILE Parental consent to parental interview 10 May 2010 [pdf (109kb)]

    13] SMILE Consent to record intervention for participants, parents and those delivering interventions July 2010 [pdf (110kb)]

    14] SMILE Lightning process assessment form July 2010 [pdf (159kb)]

    15] SMILE letter to GP 10 May 2010 [pdf (49kb)]

    16] SMILE WPAI [pdf (135kb)]

    17] SMILE Health resource use questionnaire 10 May 2010 [pdf (232kb)]

    18] SMILE SF-36 [pdf (165kb)]

    19] SMILE Interview topic guide 10 May 10 [pdf (178kb)]

    Correspondence with Ethics Documents
    20] Initial covering letter to NREC 20th May 2010 [pdf (75kb)]

    21] NREC Letter 14th June 2010 [pdf (108kb)]

    22] NREC Letter 19th July 2010 [pdf (272kb)]

    23] Covering letter in reply to NREC 28th July 2010 [pdf (159kb)]

    24] NREC Letter 13th August 2010 [pdf (72kb)]

    25] Letter re meeting notes in reply to NREC 19th August 2010 [pdf (45kb)]

    26] Second covering letter reply to NREC 20th August 2010 [pdf (109kb)]

    27] Letter in reply to NREC 13th September 2010 [pdf ( 80kb)]

    28] NREC Approval letter 14th September 2010 [pdf (213kb)]

    29] REC Form [pdf (353kb)]
  9. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    I have confirmed the claim that LP is being studied in Norway, and that they are also interested in its effects on children.

    My information is that Norwegian ME advocates are NOT happy. I am happy to acknowledge my source but I do not know if they want to be named. Don't take the dollar amount seriously - its not in dollars.

    Here is the confirmation source and Google translate version: (bolding added for easier reading, with some formatting)

    RESEARCH :: Live Landmark was three years in the dark grunnn ME. Now she will be to investigate to what extent Lightning Process can be a suitable treatment. (PHOTO: EVA GROVEN)

    Live Landmark jubilant ME study to nine million

    Live from Landmark Jar will be part of a planned study by Public Health to monitor treatment of ME diagnosis. Probably, the study will begin next year.

    For years Jar-woman Live Landmark been very involved in the treatment of patients diagnosed with ME. She has had the disease, but is now healthy. Now she will instead be part of a planned study by Public Health to determine the treatment of patients with ME.

    New Level

    Half will use treatment Lightning Process (LP). The project has a budget of nine million dollars.

    - It is cheering good. For me who has been in this for a while it's great that Folkehelseinstuttet, as the institution they are should look at this. This will help to take the LP to a new level, according to Landmark.

    LP involves mental exercise and cognitive behavioral therapy in the treatment time. Today there is not a well-developed treatment for this patient group.

    - What I hope is that through the study can be documented that patients with a diagnosis gets rid symptomonene using LP. It does not mean that I think that the LP will cure all, but maybe it will be helpful for some of those with the diagnosis, according to Landmark.

    Possibly in 2013

    The Institute has applied Research about nine million to the program. The study is calculated on 200 patients, of whom 100 get both LP-treatment and regular treatment from the public health system, and 100 controls who did not get the LP treatment.

    If Public Health receives financial support from the Research Council, the study initiated in 2013, according to Per Magnus, Division Director of Public Health and the project manager for the study.

    On a national scale somewhere between 10-20000 people this diagnosis.

    - ME is a serious disease for many children and adults in Norway, but there is no effective treatment. If LP will enter as a treatment in the public health system, there must be scientific evidence that it has the desired effect, explains Magnus.

    The 200 patients will participate in the study for two years.

    - Patients will be followed over a two year period if the LP has a short-term or long-term effect, and what side effects treatment can have. If the LP has an effect, it can be good for patients.

    In recent years it has been criticized as LP treatment.

    - That's why it's important to have good documentation to look at the effects and side effects and that an independent body looking at form of treatment.

    - None of them are either positive or negative to the LP have enough good evidence to think so much about the form of treatment yet.

    When the answer is more research, says Magnus.

    Increasing in Children

    Landmark itself will contribute their experiences and thoughts, and said the study is important, especially considering that the disease according Rikshospitalet is increasing in children.

    - I've even had ME and know what it's like to be ME patient and what pitfalls at the wheel of a rehabilitation period in the aftermath of such a course. I made me some clinical experiences. It is important that we ensure us that people are not poorer, but they get a lot closer attention, she says.

    - My experience is that there are a growing number of children who are diagnosed, she adds.

    She says that the ME Association (formerly Patient Association) has been actively looking to discourage the use of LP in treatment.

    This she hopes the planned study NIPH can change.

    Lightning Process

    The Lightning Process (LP) is a training program developed by the British osteopath and analyst Phil Parker. LP caters to persons with various mental, emotional or stress-related disorders. The training program is controversial. Proponents believe that it can make patients healthy or much better. Critics point out that no evidence that it has a positive effect and that more patients have their condition worsened.
  10. Bob


    England (south coast)
    This looks like another SMILE related paper:

    Adolescents and mothers value referral to a specialist service for chronic fatigue syndrome or myalgic encephalopathy (CFS/ME).
    Lucy Beasant, Nicola Mills and Esther Crawley.
    Primary Health Care Research & Development

    From the abstract:
    "A qualitative study nested within a feasibility study of interventions for CFS/ME [Specialist Medical Intervention and Lightning Evaluation (SMILE)]."

    There's a new thread about this specific paper, here:
  11. user9876

    user9876 Senior Member

    I notice that they are using the US version of the SF36 scale including distances measured in blocks. This probably makes it even harder to properly judge the scale.

    There has been some work on translating the SF36 scale
    (including for the UK!)
  12. Esther12

    Esther12 Senior Member

    On seeing this bumped, I'd just like to thank Suzy for her work, and for gaining access to a lot of those materials. It's really helpful for those who want to start trying to understand this trial.
  13. Dolphin

    Dolphin Senior Member

  14. DadgummedShango


    19 Process

    The feasibility and acceptability of conducting a trial of specialist medical care and the Lightning Process in children with chronic fatigue syndrome: feasibility randomized controlled trial (SMILE study).


    Crawley E, Mills N, Beasant L, Johnson D, Collin SM, Deans Z, White K, Montgomery A.


    Trials. 2013 Dec 5;14(1):415. [Epub ahead of print]



    BACKGROUND: Chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME) is relatively common in children with limited evidence for treatment. The Phil Parker Lightning Process (LP) is a trademarked intervention, which >250 children use annually. There are no reported studies investigating the effectiveness or possible side effects of LP.

    METHODS: The trial population was drawn from the Bath and Bristol NHS specialist paediatric CFS or ME service. The study was designed as a pilot randomized trial with children (aged 12 to 18 years) comparing specialist medical care with specialist medical care plus the Lightning Process. Integrated qualitative methodology was used to explore the feasibility and acceptability of the recruitment, randomization and interventions.

    RESULTS: A total of 56 children were recruited from 156 eligible children (1 October 2010 to 16 June 2012). Recruitment, randomization and both interventions were feasible and acceptable. Participants suggested changes to improve feasibility and acceptability and we incorporated the following in the trial protocol: stopped collecting 6-week outcomes; introduced a second reminder letter; used phone calls to collect primary outcomes from nonresponders; informed participants about different approaches of each intervention and changed our recommendation for the primary outcome for the full study from school attendance to disability (SF-36 physical function subscale) and fatigue (Chalder Fatigue Scale).

    CONCLUSIONS: Conducting randomized controlled trials (RCTs) to investigate an alternative treatment such as LP is feasible and acceptable for children with CFS or ME. Feasibility studies that incorporate qualitative methodology enable changes to be made to trial protocols to improve acceptability to participants. This is likely to improve recruitment rate and trial retention.Trial registration: Feasibility study first randomization: 29 September 2010.Trial registration: Current Controlled Trials ISRCTN81456207 (31 July 2012).Full trial first randomization: 19 September 2012.


    24304689 [PubMed - as supplied by publisher]Full text: BioMed Central
  15. I look forward to seeing the bastards prosecuted for child abuse and torture.
    Snowdrop and heapsreal like this.
  16. DadgummedShango


    The feasibility and acceptability of conducting a trial of specialist medical care and the Lightning Process in children with chronic fatigue syndrome: feasibility randomized controlled trial (SMILE study).

    Authors: Crawley E, Mills N, Beasant L, Johnson D, Collin SM, Deans Z, White K, Montgomery A.
    Journal: Trials. 2013 Dec 5;14(1):415.
    [Epub ahead of print]

    Full paper:
  17. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Cornwall, UK
    What's MLM?
  18. Roy S

    Roy S former DC ME/CFS lobbyist

    Illinois, USA
    SilverbladeTE and MeSci like this.
  19. He who has your food, your health, your electric power, your water, has you by the balls!
    Hence, Corporate Fascism has eaten Democracy away like cancer, and this is part of it.
    Medical Profession today is about having several billion junkies, addicts who you've got over a barrel and can squeeze for profit because their very lives are at stake.
    best if you can make dirt cheap product that doesn't cure the patient, but keeps them hanging on, dependant on your "heroin", your bullshit lies and manipulation.
    The Pharmaceutical Corporations rival the oil companies now in terms of wealth and power, and considering the oil companies were largely behind a completely bogus war that murdered 5000 Americans, 180 Brits and resulted in the deaths of 600,000 Iraqis and got away with it, the manipulation and bogus crap they hit us with is just par for the course.
  20. Tom Kindlon

    Tom Kindlon Senior Member

    I'm a bit rusty on lightning process matters.

    I'm planning on writing a quick e-letter saying that self-report measures are far from ideal for a trial of Lightning Process. Ideally I'd like to have a few references: I doubt there are suitable papers so webpages could do. Ideally first-hand descriptions of what is involved/being told to say you're well/don't have symptoms/don't have limitations. If anyone has any ideas, please reply or private message me. There are likely some in this thread but I have other things I also need to be doing so would appreciate some help. Thanks.
    MeSci likes this.

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