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Lightning Process to be Evaluated in Research Study on Children

Bob

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Snowdrop

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This and other behavioural concepts suffer from a dual personality.
While on the one hand it frames the problem as one that can be solved in an easy happy, upbeat kind of way
the evil undercurrent running through the minds of practitioners is just pull up your bootstraps, get on with it, it's all your fault, this could never happen to me.
I forget which thread it was in now but there was mention of a lack of empathy that perpetuates this thinking.
Physician heal thyself.
 

Tom Kindlon

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Dolphin

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Includes 3 people with "CFS/ME" who got worse after LP

Glob Adv Health Med. 2012 Mar;1(1):30. doi: 10.7453/gahmj.2012.1.1.008.
Worst Cases Reported to the NAFKAM International Registry of Exceptional Courses of Disease.
Fønnebø V, Drageset BJ, Salamonsen A.
Author information

KEYWORDS:
CFS, Exceptional Courses of Disease, Lightning Process, ME, NAFKAM, Registry, case reports, chronic fatigue syndrome, hematologic cancer, homeopathy, myalgic encephalomyelitis, necrotizing vasculitis, prostatitis, sinusitis, worst cases


PMID:

24278799

[PubMed]
PMCID:

PMC3833488

Free PMC Article http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3833488/
 

Bob

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These are the Forward ME group minutes from 12th Feb 2014:
http://www.forward-me.org.uk/12th February 2014.htm

The discussions are mainly about important child protection issues and education, which are well worth a read.

And there's also some discussion re the SMILE trial, which I've copied below:

"...Dr Esther Crawley [...] said they would not be in a position to make any announcement about the SMILE project until at least September of this year."

"Jane Colby expressed concern about the Collaborative, and its members’ agreement not to criticise the work of other members, particularly in view of the SMILE trial. She stated that The Young ME Sufferers Trust does not approve of or support the SMILE trial, and asked other Forward-ME members about their own position on it. Several members indicated that their organisations did not support LP. Dr Charles Shepherd said his position remained as it had always been. He had successfully reported the LP people to the Trading Standards Authority on several occasions and he remained critical of them. There should be no constraint on people criticising any research (including LP) at the Collaborative Conference. Mary-Jane Willows said she had concerns about LP but research was necessary and the SMILE project had been given ethical approval. Christine Harrison said that when they had been invited to join the Collaborative they had put on their application that BRAME only supported biomedical research. She reminded members that they had previously agreed that professional critique was acceptable whilst personal attacks were not."
 

Bob

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I think most of the attendees at the Forward ME group probably have similar views about the Lightning Process and the SMILE trial, except...
Forward ME group minutes said:
Mary-Jane Willows said she had concerns about LP but research was necessary and the SMILE project had been given ethical approval.
I'm sure that most of you know...
Mary-Jane Willows is the CEO the Association of Young People with ME (AYME) for whom Esther Crawley is a medical advisor.
 

Cheshire

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I don't think it has been posted elsewhere:

Experiences of young people who have undergone the Lightning Process to treat chronic fatigue syndrome/myalgic encephalomyelitis - a qualitative study
Silje Endresen Reme 1*, Nicola Archer 2 and Trudie Chalder 2

1 Harvard School of Public Health, Harvard University, Boston, Massachusetts, USA
2 Department of Psychological Medicine, King’s College London, UK
https://www.academia.edu/2115489/Ex...myalgic_encephalomyelitis-a_qualitative_study

Objectives.
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 LightningProcess 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.

Design.
Qualitative research study.

Methods.
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 theirparents. Inductive thematicanalysis was used to evaluate the content of the interviews.

Results.
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.

Conclusions.
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

p.13
Case history 1 (YP1, duration of CFS: 4 years)

Right after the programme ended she felt stronger mentally and better able to deal with her ME, although she wasn’t sure whether the Lightning Process had anything to do with that.

Later, however, her symptoms got worse and she started to think differently about the whole programme. Her experience was that the Lightning Process programme placed the full responsibility for recovery on her; if she didn’t do what she was taught at the seminar, it was her own fault that she didn’t experience any improvements.
This was her first real treatment she had ever undergone for her ME, and her expectations for recovery were very high. When she didn’t experience any recovery, and in addition felt blamed for the lack of recovery, she ended up experiencing a double burden in which she felt both angry and hurt about. She felt deceived to believe the programme had a 100% successrate, and she felt it was unfair to blame her for the lack of effect. The only good thing to come out of it was the strength she had tomobilize in order to work through the difficult time she experienced after doing the programme. Her effort eventually resulted in a gradual improvement towards recovery.
How ethical is it to place a child in such a situation????
 

Bob

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I don't think it has been posted elsewhere:
Experiences of young people who have undergone the Lightning Process to treat chronic fatigue syndrome/myalgic encephalomyelitis - a qualitative study
Silje Endresen Reme 1*, Nicola Archer 2 and Trudie Chalder 2
https://www.academia.edu/2115489/Ex...myalgic_encephalomyelitis-a_qualitative_study
Thanks for posting. FYI, there are a couple of threads about this paper:
http://forums.phoenixrising.me/inde...ing-process-to-treat-cfs-me-reme-et-al.21244/
http://forums.phoenixrising.me/inde...ith-the-lightning-process-chalder-2012.19475/
 

Firestormm

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For info. Bristol University website:
SMILE – Specialist Medical Intervention and Lightning Evaluation

What is SMILE?


SMILE is a randomised controlled trial for children and young people with CFS/ME. The trial recruited children and young people (aged 12 to 18 years old) from a specialist paediatric CFS/ME service in the south west of England. Participants were randomised to receive either specialist medical care (SMC) or SMC plus the Lightning Process (LP).

SMILE started as a feasibility study as we were not sure whether it would be possible to recruit children and young people in to this study. We have published our report on the feasibility phase and you can find it here

The feasibility phase helped us design the full trial and we have published our protocol which you can look at here

We have now finished recruiting and we plan to break the code and conduct the analyses in May/June 2014. We hope that we will be able to publish the results at the end of the 2014 but it may be later.

We have finalised the analyses plan which you can look at here

Frequently Asked Questions

Why is research in children needed?

Over 250 children a year already attend Lightning Process training. It is important that people know whether it is safe and effective or not. We need high quality research to answer these questions.

Should research be done in children before adults?

Children have the right to research particularly in illnesses which are different to adults. CFS/ME in children has a different outcome to adults and the treatment is different therefore research in adults cannot be extrapolated to children.

How can we take part in the study?

We have finished recruiting in to SMILE.

What ethical review has SMILE received?

The ethical approvals received are documented in the Protocol.

The SMILE study is compliant with Good Clinical Practice Guidelines, Research Governance Framework, Medical Research Council guidelines, Royal College of Paediatrics and Child Health guidelines for the conduct of trials.
 

Bob

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University of Bristol said:
We have now finished recruiting and we plan to break the code and conduct the analyses in May/June 2014.
So, are they going to break the code and conduct the analysis, in that order?

I wouldn't be surprised! :rolleyes:
 
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Esther12

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From the protocol:

Because the participants will be young people, we have
put in place rigorous procedures for informed consent
from young people and their parent(s)/guardian(s) if they
are < 16 years old. In the clinic, the clinician will ask for
consent/assent for contact by a researcher and qualitative
researcher. Consent/assent
to the study and to random-
isation will be obtained by a researcher after a full explan-
ation of the study when both the young person and the
family have had sufficient opportunity to ask questions.
Young people and their families will be given as long as
they need before giving consent/assent within the confines
of the study. We will then obtain further consent/assent
prior to each interview to check that young people or their
parents continue to be willing to participate. We will also
obtain consent/assent prior to recording any interventions
from all present
Lightning Process® (LP) is a
trademarked intervention derived from osteopathy, life-coaching and neuro-linguistic programming, delivered over
three consecutive days as group sessions.
Didn't they fail to mention that LP was founded upon known quackery like osteopathy and NLP in their information for the children? (The patient leaflet has been posted here, but I can't find it now - sorry).

@Bob : The feasibility paper said that analysis will be blinded.